Transplant Hope for Mark

Signs of Improvement!!

2012-02-13T11:34:00.004-05:00

Thank you all for your prayers! Mark is showing signs of improvement...his creatinine has dropped back down to 1.5. The Transplant Team seems to think that he does have mild cellular rejection, but that the rejection can be managed medically through additional steroids and additional immunosuppressant medications. The fact that Mark has responded so quickly and so favorably to the steroids is a good indication. Mark will not be discharged until around Thursday to allow them to administer the medications and continue to monitor him. Again, thanks for your prayers and keep them coming!

Prayer Request

2012-02-12T21:11:00.003-05:00

Mark's creatinine has increased from 1.2 to 1.7 from this morning to this evening. In addition, his potassium has been higher than it was last week. These could be signs of several things including: dehydration, obstruction in blood flow, or rejection. We just spoke with the attending physician who has ordered a few adjustments in Mark's medicine. In addition, the Team is planning on doing an ultrasound of the transplanted kidney sometime soon to try to learn more about the function of the kidney. Please keep Mark in your prayers!!!

A Chain of Love

2012-02-09T19:24:00.004-05:00

Mom met her recipient today! It was an incredibly moving moment for us all! They spent some time getting to know one another and exchanged contact information. Mom and her recipient have a lot in common. They are very close in age. A second commonality was their love for their family. Mom's recipient has 13 grandchildren, 1 great grandchild, and another great grandchild on the way! It is a wonderful thought to think that Mom not only helped to restore her recipient's health, but also positively impacted so many people!

Mom was discharged on Monday and had her follow up appointment with her surgeon on Wednesday. Mark's creatinine is now 1.0! He is now on an oral blood thinner instead of heparin via IV. Thus, he will remain in the hospital through the weekend to allow for continuous monitoring of his blood consistency. We are hopeful he will be discharged on Monday.

Thanks for your continued prayers!

"I think the kidney has found a happy place!"

2012-02-04T22:14:00.008-05:00

Mark's creatinine is now at 1.3! The NG tube is out! Mark still can't eat, but he is moving around. He met Mark Thomas in the family waiting area. One of the most exciting moments today was when Dr. Montgomery, Mark's Transplant Surgeon, visited and stated, "I think the kidney has found a happy place!" Mom is also doing much, much better! She is eating a regular diet and is resting much more comfortably! Mom may be discharged on Monday or Tuesday! We are incredibly appreciative of all the love, support, and prayers our family has received over the past few weeks!

Mom and Mark are out of ICU!!!

2012-02-02T22:12:00.004-05:00

Mom and Mark are both out of ICU! Mom's blood pressure has been stable. She is now able to drink liquids and eat jello. Mom looks much, much better...the swelling from all the fluids she was given has started to go down. Mark's creatinine continues to be going down which is a wonderful indication of the function of the new kidney. His creatinine was 1.8 at the last check! We are waiting to hear the results of the PM analysis. His pain is much more controlled now. He is still unable to eat or drink and is looking forward to having his NG tube removed within the next few days. Mark's hemoglobin levels have been low. This may be a result of the fluids or pheresis. He has had some blood transfusions to help combat the loss of blood. We are hopeful that his hemoglobin levels increase and stay stable ASAP. Thanks for your continued thoughts and prayers. It has been a difficult week, but things are starting to look much better!

Difficult Morning for Mom...Things Seem to be Looking Better

2012-02-01T17:54:00.004-05:00

Here is an update on the transplants/surgeries:

1. Mom has had a difficult recovery thus far, but things appear to be improving. After surgery, Mom's blood pressure remained very low. She was given fluid to help increase her blood pressure. However, early this morning, she was rushed back into surgery as her blood pressure was not improving. An ultrasound of her abdomen indicated the presence of a potential bleed. However, during surgery, the surgeon could not locate any actively bleeding vessel. He did remove a large amount of blood-internally-around the surgical site. So, she was bleeding at some point, but the bleed appeared to be resolved during the surgery. She was placed in the ICU to be monitored more closely. At a point this morning, her numbers were still very unstable. However, at present, her blood pressure and hemoglobin levels are more stable. The physician now reports that he thinks the bleeding has stopped. Given the situation, Mom will remain in ICU and her hospitalization may be lengthened by a day or two to allow for more time for recovery. We are continuing to pray for Mom. Please also pray for my Dad...he is exhausted as he refused to leave Mom's side.

2. Mark appears to be doing well!!!!! His numbers are encouraging. His creatinine was around 15 prior to transplantation. During the last check, it was 5.6. In addition, his potassium is now within normal limits and his blood pressure is much improved. If you recall, his "numbers" never really improved after the first and second transplant. So, we are definitely encouraged. Normal limits for creatinine is usually a little below or above 1.0. We still have a way to go, but we are optimistic!

Mark's surgery took a little longer than anticipated to complete. The mesh that was used during the second transplant and hernia repair had grown into a portion of his bowel. Thus, during surgery, the Transplant Team had to remove a portion of the bowel. The Team does not seem overly concerned about this. Mark will remain NPO or unable to eat for a few days to allow for more time for the bowel to heal.

At present, Mark is more concerned about Mom than anything. Despite his NG tube and pain, he looks much better and seems to be feeling better. Mom and Mark are in the same ICU unit...a few beds separate them. Mark has been asking to be able to get up and go see Mom. He may be able to see her tomorrow if things continue improving.

3. From the Transplant Team's most recent report, Mom's recipient (who is also at Hopkins) is doing well. After surgery, one of the first things the recipient asked was, "When can I meet my donor?" Mom also wants to meet her recipient. When Mom's health is more stable, they should be able to meet. We are all looking forward to that moment!

4. From the Transplant Team's report, Mark's donor also seems to be doing well. We are hopeful the donor will release her information to us. We would love the opportunity to contact her and thank her for her gift of life to our family!

Please continue to pray for us all. Everyone is tired (physically and emotionally). We are thankful for your prayers!!!

Mom is in recovery...Mark's surgery started at 3:05

2012-01-31T15:47:00.002-05:00

Mom is in recovery. We are waiting to see her. We were happy to hear that her nephrectomy was able to be completed laparoscopically. Mark's surgery started at approximately 3:05. We will update as we learn more. Thanks for the continued prayers!

In Surgery...

2012-01-31T14:47:00.002-05:00

Mom has been in surgery for almost 2 hours. She should be out in around 2 more hours. The nurse phoned Dad at 1:00 to report that everything was going as planned.

Mark's kidney was at the airport in Georgia at around 12:15 pm. The kidney arrived in Baltimore around 2:00. Mark was taken to the OR as it was arriving. His surgery should take about 5 hours once it begins.

At this point, we are praying and waiting. We will update the blog as we learn more.

"When my foot is slipping..."

2012-01-30T10:21:00.005-05:00

After spending all day in the Clinical Holding Unit, we are now in Mark's room on the Transplant floor! Mark completed his final plasmapheresis session this morning. He will have his final infusion sometime soon. Our family arrived in Baltimore this weekend. We were missing Mark Thomas terribly..it was wonderful to spend time with everyone. We celebrated my birthday yesterday at the Inner Harbor and had a great time!

At present, we are starting to feel pretty anxious. A dear EKU friend of mine often claims the promise of Psalm 94:18-19. "When I said,'My foot is slipping, your love, O Lord, supported me. When anxiety was great within me, your consolation brought joy to my soul." We are holding to this promise as the road we are traveling definitely seems unsteady. Please pray for our God's peace for our entire family! Thanks for your prayers!

Jars of Clay

2012-01-26T13:09:00.002-05:00

I have been thinking about how unjust it seems to see a strong man like my husband be weakened by immunosuppression. I was reading 2 Corinthians this morning...absolutely loving the scripture about "jars of clay." The image of a jar of clay seems so appropriate at this moment for our family. Like a jar of clay, "we are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed." Yet, within our jar of clay, we have a "treasure" of the light of knowledge of the glory of the Lord. And as verse 16 says, "We do not lose heart. Though outwardly we are wasting away, inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, what is unseen is eternal." Regardless of what happens next week with the transplant, I am praying that our family will have the courage to focus on the "unseen." It is so difficult to maintain an eternal perspective when the one you love is facing such a painful affliction. Whatever the future holds, may we trust in God and be inwardly renewed each day.

Familiar, Frightening, but not Forgotten

2012-01-25T11:28:00.007-05:00

Mark is currently completing his second infusion at the Hopkins Infusion Center. This is our second day of treatments. With the pheresis, infusions, and oral anti rejection medications, Mark has officially started the process of becoming immunosuppressed.

Last night, we managed to literally wrap Mark's chest in plastic wrap to cover the catheter placement site so that he could shower. Looking at the catheter tunneled into Mark's chest and all of the medicine bottles we are transporting to and from the hospital brings back so many memories of our transplant journey. It is amazing how the mind works. We suppress...or at least attempt to conceal...the memories associated with Mark's failed transplants. Despite the fact that Mark "hooks up" to his dialysis machine each night, seeing him "hooked up" to all of the medical equipment (IV, infusion, pheresis machine) brings back a mix of emotions. Despite the fact Mark takes several daily medications as a part of his dialysis care plan, seeing him consume medications he hasn't used since our last attempt at transplantation creates not only concern, but a painful awareness of what we are facing. The road we are walking is familiar and frightening.

It is amazing to think that this time next week we should have some knowledge of the outcome of Mark’s transplant. Blood analysis of the functioning of the transplanted kidney should be processed by next Wednesday. A week from today could be one of the happiest or most devastating days in our life. Most of the time, when anticipating the arrival of a specific date, we can predict if the day should yield happiness or sadness. Weddings, anniversaries, birthdays, graduations are days in which we expect joy. On the other hand, I anticipate fear and sadness on the day when Mark Thomas begins Kindergarten next Fall! Facing a situation that could result in conflicting sentiments is paradoxical. Do we anxiously await next week and count down the moments to the time when Mark’s health is restored? Or do we savor the moments in which the hope for a successful transplant remains our reality?

My brother- in -law texted us scriptures yesterday. Isaiah 41:10 states, “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Today, I remain thankful that our God not only holds the future, but holds and sustains us in the face of all our uncertainties. Our transplant journey may be familiar and frightening, but we can rest in the fact that we are never forgotten!

Plasmapheresis Session #1 Complete/ Infusion #1 Underway

2012-01-24T14:58:00.008-05:00

Mark completed his first pheresis session this morning (a procedure that removes the plasma or watery part of the blood that carries the antibodies that may trigger an immune response that leads to rejection of transplanted organs). He is now at the Infusion Center where he is being given an IV medication to help combat a virus that may contribute to rejection. Mark has been struggling with nausea which is a common side effect. He appears to be resting well now.

Late last night, Mark and I braved the city as we ventured out to purchase a power cord for my computer. My computer was getting no power...making it very difficult for me to work! Despite the fact that he felt poorly and his placement site was tender, Mark was eager to help. I have always been impressed with my husband's selfless spirit. Even in a difficult situation, he thinks of others first. I am so blessed to be his wife!

Thanks for the continued prayers. I am thankful we can find rest and comfort in the peace that our God provides.

Transplant Journey #3

2012-01-23T09:41:00.002-05:00

Our journey to Mark's third transplant began yesterday as we traveled to Baltimore. Packing for 5 weeks was a challenge! Not only did we pack clothes, but we also packed dialysis supplies, medication, Mark Thomas' toys, and tons of books and lecture materials (I will be teaching my courses using an online format while we are in Baltimore). We are very pleased with the town home we are renting in Baltimore. The town house is unbelievably nice...a perfect place to recover from surgery! We hope to post pictures at some point during our stay. I am impressed with the home itself...love the modern decor and artsy feel...Mark is impressed by the fact he can walk to Camden Yards!

We are now at Hopkins for Mark's first blood draw. In addition, Mark is having a "Davol catheter" placed in his neck for the plasmapheresis treatments he will complete this week. The procedure to place the catheter is quite uncomfortable. We are both anxious to have this behind us. Please keep Mark in your prayers!

Prayers Answered: Third Transplant scheduled!!!

2011-11-29T20:54:00.016-05:00

We found out this week that Mark matched the potential donor!!! The Transplant Team has scheduled Mark's third kidney transplant for January 31, 2012!!! Rather than participating in a "paired exchange" in which my mother (i.e. Donor 1) would donate to a person in need of a kidney (i.e. Recipient 1) and Mark (i.e. Recipient 2) would receive a kidney from an individual (i.e. Donor 2) donating on behalf of mom's recipient as we had thought, Mark will be a participant in a "chained transplant." Chained transplants involve more than 2 donors and 2 recipients. In other words, several transplants occur in a "chain-like" or "domino effect." Chained transplants can occur across medical facilities and networks. Mark will actually be receiving a kidney from a donor in Georgia who was listed in a different "network" or "database." Mark's donor is donating as her loved one recently received a kidney from a different donor in the "chain". My mom will donate her kidney to expand the "chain" by giving to another patient in need. Although Mom's kidney won't be given to Mark, her gift enables Mark to participate in the chained transplant. As we have mentioned in prior posts, transplantation from a cadaver isn't really an option for Mark. Given Mark's history of rejecting kidneys, Mark needs plasmapheresis treatments prior to a kidney being placed in his body to decrease the likelihood of rejection. These treatments are scheduled the week prior to transplant and require the placement of a "deep line." The treatments take several hours as your blood is pumped out and cleansed of the antibodies found in plasma (i.e. the watery part of blood) that trigger immune response (i.e. rejection). Because of the time constraints of receiving a kidney from a cadaver (i.e. the kidney must be transplanted usually within 24 hours) and Mark's need for the treatments, Mark has to receive a kidney from a living donor. As we have also mentioned, Mark does not match any of the people (his Mom, his cousin-Jamaica, my brother, my Mom, my Mom's friend) who have wanted to donate to him. Thus, our only opportunity for a transplant is through a paired or chained transplant. My Mom's selflessness in donating to someone she does not know and probably will never meet is providing Mark with an opportunity to have his health restored.

This week has been filled with feelings of excitement, joy, thankfulness, fear, and anxiety. The prospect of receiving a successful transplant is amazing. The joy that would come from seeing Mark's health restored and seeing him enjoy the freedom from no longer relying on dialysis to sustain his life is almost unimaginable. At the same time we are hopeful, we are fearful. In many ways, we have compartmentalized and suppressed all of the bad memories surrounding our transplant experiences. The fears and anxieties we possess about the transplant are almost uncountable. As we approach the third transplant, those fears are becoming less of a memory and more of a reality. At the same time we are hopeful and fearful, we are thankful. It is amazing to think that the woman who gave me life is now giving part of herself to give life to my husband. The gratitude we have for my Mom's willingness to help Mark is almost indescribable. How amazing it is to think about how God has worked to join Mom, Mark, and all of the other donors and recipients across several medical facilities over several months in the same chained transplant. Reflecting upon the fact that God joined mine and Mark's hearts in love before we ever realized the impact my mother would on his health is also amazing. God's ability to work so intricately and powerfully across time and circumstances with so many people is truly unfathomable.

1 John 3:1-"How great is the love our Father has lavished on us, that we should be called the children of God"-has a new meaning to our
family. Once again, we are amazed how our God can use the most difficult of situations to allow us to know and understand His love in new
and deeper ways. As always, please lift our family and the other families in the chain in your prayers! We will update the blog as we learn more about the transplant!

Potential Match Identified...testing to follow

2011-11-13T21:46:00.006-05:00

On Friday, we received a phone call from Hopkins. Mark's nurse stated that a search of their database identified a potential match for Mark and my mother. This means that my mom appears to "match" a person in need of a kidney and that Mark appears to "match" the person's loved one who is donating on their behalf. The next step is to send blood/tissue samples to Baltimore for testing. It will take about 2 weeks to analyze the sample once received. This could potentially be incredibly great news (i.e. both pairs match-Mom and the person in need of a kidney-Mark and other Donor)! However, we are cautiously optimistic as we could find out that one or both pairs did not "match."

As I was painting Mark Thomas' room this afternoon, I listened to Chris Tomlin's "I will rise" (http://www.youtube.com/watch?v=fa8w7mGug0c&noredirect=1). The words of the first verse of the song are so applicable to our lives at this moment. Despite how crazy our life seems right now as we wait to hear back from Hopkins, I have peace about our future. As the song expresses, often times our hearts and flesh fail. It is often a struggle to keep a positive perspective and not to be overwhelmed by "not knowing" if and when Mark's health will be restored. Regardless of whether the pairs match or ultimately whether or not a third transplant happens and is successful, I rest in the fact that the "victory is won" and I can always rely upon the "Anchor for my soul" that my God has become.

There's a peace I've come to know
Though my heart and flesh may fail
There's an Anchor for my soul
I can say, "It is Well"
Jesus has overcome
And the grave is overwhelmed
The victory is won
He has risen from the dead
And I will rise
when He calls my name
No more sorrow
No more pain!

We will post more information as we learn more. Please continue to pray for our family. We are also requesting prayer for the other patient and family involved in the testing. Thanks!

Seven months later...an update on Mark's health

2011-11-05T19:57:00.003-04:00

Once again, I will begin by apologizing for not updating our blog! Unlike the past, we have a good excuse for not updating the blog. In the Spring, I was offered a faculty position teaching grads/undergrads pursuing careers in Speech-Language Pathology. After a great deal of prayer, we decided to move! Over the past several months, we have sold our home, bought a home, found a new school for Mark Thomas, and all of the other things that come with relocating. While we are enjoying our new home and I love my new job, Harlan will always be "home" and we miss our family and friends!

With respect to the status of Mark's transplant, my Mom was selected as the candidate for being a donor. While my Mom does not "match" Mark, she can donate in a paired exchange. In other words, Mom will donate to a stranger so that the stranger's donor will give to Mark. Last month, Mom and I traveled to Hopkins to complete the donor evaluation process. We learned last week that she was cleared to donate. Thus, at this point, Mom and Mark's names have been entered into a database. Hopkins will begin looking for matches. When they have identified a potential match, Mark and Mom will begin sending tissue samples to Hopkins. Once matching has occurred for the paired exchange, the transplants will be scheduled. However, there is really no way of predicting how long it will take to identify a match. We could remain in the database for 2 months, 2 years, or 2 days! Please continue to pray for our family! To be honest, we are trying NOT to think about the transplant and trying to just give it to God. Not knowing when the transplant will happen is difficult to say the least. We find comfort in the fact that God is in control of every detail of the situation! Thanks for your continued prayers!

Report from Hematologist at Hopkins

2011-03-27T21:23:00.012-04:00

Mark's appointment at Hopkins with the Hematologist was Thursday of last week. We learned that Mark does not have antiphospholipid syndrome, a blood clotting disorder in which Mark has family history and that has been associated with unsuccessful transplants. The Hematologist felt that Mark's blood did not look abnormal and felt like he did not have a hypercoagulability problem despite the issues that he has had with clotting over the past two years (i.e. clotting of first transplanted kidney, clots in his heart in January of 2010, and a non functioning dialysis fistula). He did see a few minor things with Mark's blood that he felt warranted a few additional tests, but nothing he found he felt would be directly linked to the failed kidney transplants. As we had mentioned in earlier posts, the Transplant Team at Hopkins has been successful at transplanting patients with a history of failed transplants and antiphospholipid syndrome. In fact, one of their current research projects is investigating the use of a new medication in transplant patients with antiphospholipid syndrome. So, we were actually hoping that Mark would have this blood clotting disorder as it would serve as a reason why the transplants have failed. Needless to say, we were a bit disappointed on Thursday.

While we were at Hopkins, blood samples from Mark and me were collected to investigate whether or not there is the presence of anti endothelial antibody when our blood is combined. The Team will also analyze Mark's blood when combined with Justin's blood (Justin has sent his blood to Hopkins earlier this year). If the presence of this antibody is detected when Mark's blood is combined with the blood of his donors, it is evidence that the transplants failed due to humoral rejection or antibody mediated rejection. This would actually be a good thing as this would explain why the transplants failed. It too is an issue in which Hopkins is researching as has had success with transplanting patients using their "highly sensitized protocol". Hopefully, we should find out the results of the testing within the next two weeks. As always, thanks to all of you who have prayed on our behalf. We ask for continued prayer as we will learn soon whether or not a third transplant will be a possibility.

On a positive note, Mark Thomas and Mark's mother, Rhonda, accompanied us to Baltimore. We spent some time in DC and had a blast! Mark Thomas was so excited about riding the Metro. He actually became quite skilled at traveling via Metro...he would insert his card and walk through the Metro gates alone. He reminded us often, "I can do it all by myself because I am a big boy." He also liked the Air and Space Museum and Natural History Museum of the Smithsonian. He especially enjoyed the planetarium and dinosaur exhibit.

Appointment with Hematologist Scheduled

2011-02-15T19:22:00.002-05:00

After a week of phone tag, our appointment with the Hematologist at Hopkins was confirmed for March 24th. Originally, we were scheduled for May 11th (the day my sister is scheduled for her c-section). So, we are thrilled to secure an earlier appointment. The appointment with the Hematologist will determine if Mark has anti-phospholipid syndrome-one of the blood clotting disorders Hopkins can treat prior to transplantation. On a related note, a few weeks ago, Justin (Mark's second donor) and I sent a sample of our blood to Hopkins to determine the presence or absence of antiendothelial antibody. This is the other blood clotting issue that can be treated prior to transplantation. Unfortunately, the lab at Hopkins could not complete the analysis of my blood as the sample was not large enough. Thus, we will have to send our blood again sometime soon.
So it looks like we will continue to pray and wait for now. We are prayerful that God will lead and direct our family and the physicians at Hopkins as we will find out relatively soon if a third transplant will be a part of God's perfect plan for our family. As always, thanks for the prayers and support.

Update from Initial Visit at Hopkins

2011-01-09T21:23:00.009-05:00

Mark and I returned from Baltimore on Thursday. Our initial visit with the Transplant Team at Hopkins was successful on all counts. However, whether or not Mark will receive a third transplant is undecided at present as additional testing is needed. As we had hoped, we met Dr. Montgomery, the Surgeon who is doing research on sensitized patients who have had unsuccessful transplants. The entire Team (Surgeon, Nephrologist, Nurse Coordinator, Social Worker, Dietitian) at Hopkins seemed well informed of Mark's case and very knowledgeable of how to make a third transplant successful. In addition, the Team was compassionate and very patient...we had formulated about 25 or 30 questions and received an answer for all of them between the visits with each Team member. Here is a brief summary of what we learned:

From the review of Mark's medical records, the Team believed that the first transplant failed due to necrosis (i.e. death to tissue due to inadequate blood supply). As you will remember, Mark's body seemed to immediately clot off my kidney when it was placed in his body. The lack of blood supply caused my kidney to die which caused it to be removed from Mark's body a few days following the first transplant. The question that needs to be answered before a third transplant will take place is "What caused the clotting?". Over the past two years, Mark has had three major blood clotting issues....his body clotted in response to the first transplant, his body clotted off the fistula the surgeons at UK attempted to create in his forearm for dialysis last January, and his body clotted in response to the dialysis catheter that was tunneled near his heart which resulted in the large "mass" or vegetation that remained in his heart for 6 months last year. A recurrent theme in our discussions at UK has been the presence of a blood clotting issue. Just before the second transplant, Mark saw a Hematologist at UK who checked him for several blood clotting disorders. At that time, he tested negative for one specific blood clotting disorder-antiphospholipid syndrome-a disorder in which he has family history and that has been linked to negative outcomes in transplantation. However, results from the testing at UK have been mixed as analysis of the kidney from the first transplant indicated that a blood clotting disorder may have caused the lack of blood supply to the kidney. In addition, we learned from Hopkins that some of the treatments Mark received around the time of the second transplant could have impacted the results of the blood testing. Because results have been mixed and the significance of a blood clotting disorder is great, the next step at Hopkins will be to see their Hematologist. The Nurse Coordinator is scheduling this appointment for Mark in the near future.

The Team at Hopkins seemed to think that the second transplant was unsuccessful due to humoral rejection or antibody mediated rejection although the testing and analysis completed at UK was inconclusive. As we've mentioned in prior posts, Mark's immune system is very sensitive. He has developed antibodies against most people's tissue. In addition, his immune system has memory to the foreign tissue placed in his body from prior transplants (Justin's kidney and my kidney). This makes him considered "sensitized" and serves as the reason why it may be difficult to find a donor. However, much to our surprise, the Team at Hopkins expressed that they thought Mark would have a "reasonably good chance" of finding a match in a paired donation or "kidney swap". Mark would take part in the sensitized protocol at Hopkins that involves use of plasmapheresis (a procedure much like dialysis in the sense that it pumps out all of the blood in the body, but rather than cleansing it, it removes the plasma or watery part of the blood that carries the antibodies) and IVIG (Intravenous Immunoglobulin-a treatment to replace the protein removed from pheresis) several weeks before and after a third transplant.

After Mark sees the Hematologist at Hopkins and after the the blood that was drawn last Wednesday is analyzed, the Team will determine if we will proceed with a third transplant. If Mark has a blood clotting disorder that they know how to treat, he is likely to be transplanted again. More specifically, if Mark has antiphospholipid syndrome-the disorder in which he has family history, or anti endothelial antibody (something I know very little about), he is likely to receive a third transplant as Hopkins has successfully transplanted sensitized patients with these issues in the past using their experimental protocol. However, if Mark has a different blood clotting disorder, it is unknown whether a third transplant will be attempted. Hopkins transplanted at least two other sensitized patients who exhibited other blood clotting issues unsuccessfully in the past. So, as funny as it sounds, I am hopeful that the testing will show that Mark exhibits another health problem...either antiphospholipid syndrome or anti endothelial antibody!

On a positive note, as you will see below, Mark and I enjoyed our time in DC! We visited the Holocaust museum, the Natural History Museum at the Smithsonian, Arlington, and went on a narrated tour of the monuments! We missed Mark Thomas terribly, but were glad he avoided the bitter cold wind in Washington! In the picture below, Mark is pointing to his name sake...Marcus R. Davis...a Vietnam Vet from Evarts who was good friends with his father.

Initial visit at Johns Hopkins....1/5/2011

2011-01-01T10:48:00.000-05:00

I hope everyone has enjoyed a blessed holiday season. The Christmas season seems to be such a magical time of year...especially in the eyes of a 3 year old boy. Our family enjoyed a wonderful holiday season. Highlights of our holidays included watching Mark Thomas as a wise man and our nephew, Landon, as Baby Jesus in our church play, seeing Mark Thomas' excitement opening his gifts (especially his new cowboy boots and Thomas the train toys), and a beautiful "white Christmas" as southeastern Kentucky received about 6.5 inches of beautiful snow!

As many of you know, the husband of one of my mother's college friends, Mr. Powell, expressed interest in donating his kidney to Mark. Over the past several weeks, we have been anxiously awaiting the results of the tissue typing test Hopkins completed with Mark and Mr. Powell. We were hopeful that Mr. Powell would be a potential donor as he has type O blood. However, we recently learned that Mr. Powell was not deemed a potential donor. While Mark and I have been trying to prepare ourselves for this news, it is hard not to feel a great deal of disappointment. I keep trying to tell myself to focus on how amazing it is that someone we don't know well was willing to help Mark. Despite the outcome of the testing, Mr. Powell's selflessness and willingness to help truly was a remarkable holiday gift.

Tomorrow morning Mark and I are leaving for DC and Baltimore. Mark is scheduled to meet with the Transplant Team at Hopkins on Wednesday. Because none of Mark's potential donors have matched, we will proceed with the paired transplant program. All of Mark's potential donors (his mother, my mother, his cousin Jamacia, and Mr. Powell) have wanted to participate in the paired transplant program in an effort to help Mark. In the paired transplant program, one of Mark's donors would donate his or her kidney to a stranger and the stranger's donor would donate a kidney to Mark. At present, Mark must complete several different types of testing in order to be deemed healthy enough to receive another transplant. In addition, his donor will complete testing in order to be deemed healthy enough to give a kidney. After the testing is complete, Mark will then be entered into a database in hopes that a match can be found. It remains uncertain if a match for Mark will be found in the paired transplant program. He may wait for a short period of time, may wait for several years, or a match may not be found at all. In the past, Hopkins maintained their own database of patients interested in a paired donation. However, it is our understanding that as of the end of last year, UNOS (Universal Network of Organ Sharing) has consolidated databases to allow for paired donations across the nation with multiple transplant facilities. (see link at http://www.unos.org/about/index.php?topic=newsroom&article_id=2646:45dc3b2bc18bc5bbc85a467639b37d22). While we are eager to go to Hopkins and have Mark deemed eligible for participation in a paired donation, we are trying to remain cautiously optimistic realizing that a third transplant may or may not happen. Ultimately, we are attempting not rely on ourselves (or an impressive transplant facility), but to place our trust in God and his perfect plan for our lives. This, of course, is a constant struggle. Please pray that we will travel safely, that the trip will be productive, and that we will enjoy DC (Mark has never been to Washington)! Most importantly, please pray that we will have the correct frame of mind and spirit as we continue on this journey!

Just hold on....Just let go

2010-11-06T21:41:00.012-04:00

I've spent a great deal of time over the past few weeks thinking and reflecting about our journey over the past two years. In a way, the time seems to have passed so quickly. It is hard to believe that two years ago today-on 11/6/2008-Mark and I visited UK for his initial visit with the Transplant Team. But, in other ways, it seems like our life has been turned upside down for so long. It is hard to remember exactly what life was like when our thoughts were not consumed with worries, our house wasn't cluttered with dialysis supplies and medical equipment, when the most common greeting received wasn't "How is Mark feeling?", and when the most frequent conversation didn't center around transplantation. Our sense of normalcy has drastically changed. The life we now live is so different from what we would have imagined. At times, it is difficult not to become angry and bitter with the situation. Over the past two years, there have been several times when Mark and I have asked "why?", "why us?", "why now?" As silly as it sounds now, I really was not expecting to learn a few weeks ago that none of Mark's three potential kidney donors were matches and that it may be difficult to find a match for a third transplant. I guess I felt like we had suffered enough and had waited long enough for something to happen in our favor. For two years now, I've been living with this "JUST HOLD ON" mentality. "JUST HOLD ON...if you can find a living donor and Mark can get transplanted before he is on dialysis, it will all be OK." "JUST HOLD ON....even though the first transplant wasn't successful, if you can find a second living donor, Mark can be transplanted again and it will all work out." "JUST HOLD ON...even though the first two transplants didn't go as we had planned, if we can get you referred and accepted by Hopkins, it will eventually work out." I have realized that in the midst of my "JUST HOLD ON" mentality, I've never truly "JUST LET GO" of the situation and fully given it to God. I've been so consumed with the "next step" and concentrating on what I could do to make it all go away....from praying and praying that I would be the donor...to preparing and planning for the first transplant... to reading everything I could to better understand Mark's health... to making sure that all appointments were scheduled and all tests were complete... to analyzing insurance options... to planning short term housing for our family in Baltimore if Mark was transplanted at Hopkins. Just recently, I've come to terms with the fact that there isn't a "next step"...that a third transplant may not be a part of God's plan for our lives. I've also realized that always focusing on the "next step" and constantly looking to what lies ahead often leads to not completely trusting God and truly relying on Him in the present. In many ways, Mark and I have been waiting for something positive to happen to restore his health for so long that our waiting started to interfere with our living. I have realized that I do not want anything to put my faith on hold. I've got to "JUST LET GO" and start completely trusting God today...not waiting to trust Him when something positive happens, but relying on Him now and trusting that He will guide us and protect us even if a transplant is not a part of His plan for our lives.

Praying for a miracle....news from Hopkins received

2010-10-18T18:41:00.014-04:00

Several things have happened since our last blog post. After several emails, faxes, and phone calls, the confusion with the records at Hopkins seems to be resolved. In addition to requesting records from UK and Mark's Dialysis Nephrologist, the transplant team at Hopkins ordered two additional tests as a part of the evaluation process. Over the past several weeks, we have scheduled the tests, completed them, and sent the results to Hopkins.

On September 20th, Mark sent a blood sample to Hopkins for tissue typing. A few weeks ago, three potential living donors (Mark's mother-Rhonda, my mother-Tish, and Mark's cousin-Jamaica) sent their blood samples to Hopkins for crossmatching. Crossmatching is a test in which the donor's and recipient's blood is mixed to determine the presence or absence of an immune system response. A positive crossmatch would indicate the donor's body would likely trigger an immune response (i.e. rejection) to tissue from the potential recipient. Thus, a negative crossmatch is the favorable test result as it would indicate that Mark's body would not trigger an immune response. Thus, a negative crossmatch would result in a greater likelihood of Mark's body accepting a kidney from the potential donor. Because Mark has had two transplants, in addition to the makeup of his own immune system, Mark's body has "memory" of the foreign tissue that was placed in his body (i.e. my kidney, Justin's kidney). So, the team at Hopkins also checked for a "repeated mismatch". I am not absolutely clear on the details of this test. It is my understanding that a repeated mismatch would indicate that the potential donor's blood/tissue is similar in composition to the blood/tissue that was rejected in prior transplants. Thus, the presence of a repeated mismatch would not be favorable as it would indicate that Mark would likely reject a kidney from the potential donor.

We found out today that all three of Mark's potential donors had a positive crossmatch with repeated mismatch. Thus, the likelihood of Mark's body rejecting a kidney from Rhonda, my mom, and Jamaica is high which rules them out as a potential living donors. As you might imagine, we are pretty devastated by this news as a living donor is a requirement in participation in the incompatible kidney program at Hopkins.

At this point, we have 2 options for a third transplant. One option would be the identification of a potential living donor whose tissue typing did not result in a positive crossmatch or repeated mismatch. The nurse stated that blood type 0 would likely be the best match. Just this evening, we have had three additional family members volunteer to donate to Mark. However, it may be unlikely that a family member is chosen as a sibling of mine is likely to have similar blood/tissue typing as me and my kidney was rejected by Mark's body. The nurse told us not to rule any donor out until blood work confirms a positive crossmatch. The nurse also described Mark's immune system as "very complex" noting that he has the presence of several antibodies that trigger an immune reaction during transplantation. There are treatments to rid the body of antibodies prior to transplantation (plasmapheresis-Mark had this treatment after his second transplant). However, some antibodies are more aggressive than others and do not respond as positively to plasmapheresis. Mark happens to have an antibody (A2) that is an aggressive antibody not always treated by plasmapheresis. Rhonda, my mom, and Jamaica also have A2 which contributed to them not being selected as a donor. Approximately 50 to 60% of the general population has this antibody as well. Thus, finding a living donor who has a negative crossmatch will be difficult to say the least.

The other option would be to become involved in the paired kidney donation program at Hopkins. This program entails a living donor for Mark donating his/her kidney to a stranger, and the stranger's living donor donating a kidney to Mark. Just like the use of a living donor who is a friend or family member, this option could only happen if Hopkins can identify a donor who "matches" Mark. Given the fact that he has several antibodies in his immune system, this may be a difficult and long process.

As we learn more about the options described above, I will post more information. At this point, I guess we are pretty numb in that it is hard to process all of this. Emotions are difficult to manage in the midst of this situation. Please pray for our family and especially the three donors-Rhonda, Tish, and Jamaica. Our mothers seem to be struggling with the situation as I know it was both of their hearts' desires to sacrifice part of themselves to help Mark. Please pray for my sweet mother-in-law. I am sure it is difficult to hear that despite your wishes and willingness to help, you can't help your son. In a strange way, I am thankful that, despite the outcome of the first transplant, I at least had the opportunity to help Mark. I am in awe of Jamaica's willingness to help Mark and am sure she is struggling with emotions resulting from not being able to donate. I am trying to stay focused on the fact that these three amazing people were willing to make such a sacrifice for Mark. Regardless of the outcome of the testing, nothing can change take away from their remarkable selflessness.

Extremely frustrated...still waiting for word from Hopkins....in for an even longer wait!!!

2010-09-06T21:56:00.007-04:00

Well, after several months of thinking that Mark's case was being reviewed by the Transplant Team at Hopkins and that we would hear from Hopkins sometime soon regarding Mark's referral for a third transplant, we learned this week that we will have to continue to be patient and wait as Mark's case has not yet been reviewed by the Transplant Team! As you might imagine, after learning this information, we have been upset, stressed, and angry to say the least! The story behind the referral is long and complicated, but here is what has happened in brief:

We were officially referred to Hopkins in late May by UK who sent Mark's records to Hopkins at the time of referral.
We received the referral packet in early June and submitted the referral forms within 2 weeks.
During the first week of July, we received a voice mail from the Incompatible Kidney Program Coordinator saying we had forgotten to sign one form. We faxed the form the following day.
In mid July, we were contacted by our insurance agency who stated that Hopkins is out of network and wanted to make sure we were in agreement to pay out of network charges. We agreed. Insurance agency informed us that evaluation at Hopkins was approved.
On August 6th, we received a letter from Hopkins saying that Mark's file was incomplete and that if his file was not made complete within 45 days, his case would be listed as inactive and he would have to start the referral process over. We immediately contacted UK and Mark's Dialysis Nephrologist and were assured all records were being faxed immediately to Hopkins.
I began calling the Program Coordinator regularly (i.e. up to three times per week) to ensure Mark's file was complete. Each time I called, I got her voice mail and asked for her to return my call to confirm Mark's file was complete, but never received a returned call.
Last Wednesday, I called Hopkins and received a voice mail again. Frustrated and worried about the 45 day deadline approaching, I called a number for patients who had already been transplanted and spoke to a receptionist who provided me with the telephone numbers of three nurses working in the Incompatible Kidney Program. I spoke with one nurse who informed me that she could not believe that this situation had been going on since June and noted that most new referrals are seen at Hopkins in a timely manner. She informed me of what medical records were needed to complete Mark's file.
While I was speaking to the nurse, I coincidentally received a voice mail from the Program Coordinator (i.e. the lady I had been calling for several weeks). I immediately returned her call. She informed me that she had not received my messages and that I was fortunate that she had not already changed Mark's status to inactive. I will not elaborate upon the phone call from the Program Coordinator, but will state that she spoke to me in an extremely rude and unprofessional manner as if I was ignorant and unworthy of her time and attention.
I phoned UK and was told that Mark's records had already been submitted on two occasions, but would be sent for a third time. I went to Mark's Dialysis Nephrologist's office and requested that records be faxed. I waited for the records to be faxed from the Dialysis Center and heard the Dialysis nurse call Hopkins to confirm that records were received.
I emailed the Program Coordinator at Hopkins the following day to inquire about the status of Mark's case. She emailed me on Friday stating that his file remained incomplete and listed several items (including the consent form we faxed in early July) that to my knowledge are already in her possession.
I emailed the Program Coordinator stating that all records should be received and outlined the dates and times when records were sent. If I have not heard from her by tomorrow, I am planning on contacting her administrator.

As a result of the situation described above, Mark's case has not been yet been reviewed by Hopkins and absolutely nothing has happened toward a third transplant for nearly 4 months! It is ironic that we have been rushing to the mail box each afternoon prayerfully and anxiously awaiting a response from Hopkins when the physicians at Hopkins are not even aware of Mark's case! The anger and frustration we have felt this week has been indescribable! My Aunt often reminds me that God's timing is perfect...not too early and never too late. I am trying hold to these words and not question what has happened, but it is very difficult! As always, please continue to pray for our family. Please pray for us to have patience and a positive attitude while we continue waiting and while interacting with people who are disrespectful and either dishonest or extremely unorganized. However, more than anything, please pray for the Transplant Team who will hopefully be reviewing Mark's records sometime in the near future!

Mark Thomas' Reminder

2010-07-27T09:43:00.002-04:00

My parents came up for dinner last night. Before we ate, Mark Thomas asked my mom to pray. After she said her prayer, Mark Thomas looked up and said, "Mimi, you forgot to pray for Daddy's kidneys!" Although kidney disease has been difficult for Mark to say the least, I am thankful that through this trial, Mark Thomas is learning the importance of prayer and faith. Although he doesn't realize the seriousness of his Dad's situation, he does seem to understand the importance of turning our problems over to our Heavenly Father. I am thankful for the reminder that good things can happen in the midst of not-so-good situations.

Praying and Waiting

2010-07-21T10:27:00.003-04:00

As many of you know, our family is waiting to hear from Johns Hopkins with the decision of whether or not the referral from UK will be accepted and Mark will start the evaluation process for a third transplant. We submitted all of our paperwork and consent forms in early June. We've heard from our insurance company a few weeks ago. Apparently, Hopkins is "out of network" on our insurance plan. Humana wanted to make sure that we were willing to pay the "out of network" charges. Of course, we agreed and were told that Humana was pre-approving Mark for a transplant evaluation. The Transplant Management team at Humana thought that Hopkins would be contacting us soon with information about Mark's case. However, at present, we still haven't heard anything from Hopkins. So, we are waiting and praying.

Although we have enjoyed a wonderful summer (minus Mark's hospitalization in June), it is difficult to simply wait. It feels like we are at a crossroad...either we will start the journey for another transplant or we will have to go down a different road that entails coming to terms with "life on dialysis" or searching for another facility that would transplant Mark. To be honest, both options are really scary. The thought of another transplant is promising in so many ways, but can also cripple you with fear as it brings back so many painful memories. Of course there is always the chance that Hopkins will accept the referral, complete the evaluation process, and then decide Mark isn't a candidate for a third transplant. I'm not sure which would be worse....never going to Hopkins or getting your hopes up and then learning it won't work out? The thought of Hopkins saying "no" seems like the worst possibility. At what point do you give up on transplantation? It would be difficult to know when to stop searching and simply accept life as it is. I am praying that we will find God's peace in whatever situation is the outcome. I am also praying for strength and guidance.

On a positive note, Mark went back to work!!! About three weeks ago, he started working part-time as a Loan Reviewer at the Bank of Harlan! The Bank has been so extremely supportive of Mark throughout the situation with his health. After being gone nearly a year, they welcomed him back and have been very accommodating of his doctor's appointments and dialysis needs. We remain so thankful for the love and support of our community.

In the eyes of a child

2010-06-11T15:14:00.004-04:00

I guess you never know how a parent's illness affects a child. It is difficult to know what you should share with your child. You don't want to say too much and you don't want to say too little. Mark and I have a tremendous support system in our family who does a great job at helping us with Mark Thomas when Mark is in the hospital. Although we don't ever have to worry about his care when we're away, I often worry about how he is processing it all. Yesterday, Mark Thomas looked at Mark, patted his face, and said, "Oh Daddy, I love you. I want you to be here forever." These words were so sweet and caring, but were also heartbreaking as they evidence Mark Thomas' worry and concern for his father. Childhood is not the time for worry and concern. I envisioned Mark Thomas' childhood as a carefree time of laughter, learning, and fun. For all of our blog followers who pray for our family, I'm asking for prayer for my precious baby boy. Please join me in lifting up Mark Thomas...may he feel secure and loved through a difficult time.

Report from Cystocopy

2010-06-07T19:55:00.006-04:00

Mark had cystocopy this afternoon to determine the cause of the hematuria. The results indicated the presence of several blood clots in the transplanted kidney. This confirmed that Mark's body had started rejecting the transplanted kidney since being taken off the anti-rejection medications. Thus, the Transplant Team started Mark back on the immunosuppressive medications this evening. Although we feel blessed the cystocopy did not show something worse than clots, the fact that Mark will be on immunosuppression while he is on peritoneal dialysis is worrisome as it will make it more difficult to avoid infection (peritonitis). In addition, if the medications aren't effective, removing the transplanted kidney may be necessary. This is especially worrisome as Mark most likely will not be able to use peritoneal dialysis while healing from the surgery (nephrectomy).

Mark was scheduled to see the Cardiologist this morning regarding the clots in his heart. Obviously, we couldn't make it to the appointment. The Transplant Team arranged for the echocardiogram to be completed while Mark is an in-patient. They were hopeful the echo could be done after the cystocopy so we could go home today. Unfortunately, this didn't happen. So, we'll be here until tomorrow. We're hoping that Mark will get the echocardiogram early in the morning and that the Cardiologist will come and speak to us soon after so we will be discharged soon. As you might imagine, we are so eager to see Mark Thomas! Also, tomorrow is my niece's first birthday and Goggie and Pappy are coming home from Naples for the summer. So, we want to be home ASAP!

Admitted to UK due to clotting

2010-06-06T19:14:00.002-04:00

Mark was admitted to the Transplant Unit early this morning after being in the ER last night. Last week, Mark noticed blood clots when urinating. He was being trained on a new dialysis machine and was seen by the dialysis Nephrologist in Hazard on Thursday and Friday. Mark's Nephrologist had instructed him to monitor the clotting and to go to the ER if the clotting worsened. We called the Transplant Team yesterday and were told to come on to the ER as clotting can be a sign of rejection. Although the transplanted kidney isn't fully working and Mark is no longer on immunosuppressive medications, he could still reject the kidney. The other potential cause of the bleeding could be some type of structural problem within the urinary tract. We were scheduled for an endoscopic assessment this morning in which a camera is used to detect any obstruction or structural problem. However, we kept getting bumped as more urgent cases were getting priority in the OR. So, Mark is on the schedule for the procedure tomorrow afternoon. Hopefully, the assessment will give the physicians the information about how to treat the problem. Things are kind of up in the air in that we could be discharged tomorrow if the assessment shows no huge problem and the Transplant Team thinks that use of immunosuppression could make the clotting stop OR we could be here for a while if the assessment shows the need for some type of more invasive procedure to fix any obstruction or structural deviation. Mark will go under general anesthesia tomorrow. Please pray that he won't experience any adverse reaction to anesthesia as he has in the past. We are trying to keep a positive attitude....it is just so hard to believe that Mark was at UK this time last year for the second transplant!

Phone call from Hopkins received...records released!

2010-05-28T15:16:00.004-04:00

Well...Mark received the phone call from Johns Hopkins today! There isn't really much to report and it isn't time to celebrate yet as the Transplant Team at Hopkins only called to request our address in order to send an informational packet and release of medical information. Thus, there still may be a chance that Hopkins will not accept the referral. While we still don't know what will happen with Hopkins, it was nice to receive the call and find out that things are moving forward. As always, thanks for the continued prayers and support.

Referred to Johns Hopkins

2010-05-08T16:21:00.002-04:00

Mark and I went to the Transplant Clinic at UK this week for our last follow up appointment. Now that Mark has a dialysis routine established and has been weaned from the immunosuppression medications, he is officially being referred to Johns Hopkins. The Chief of the Transplant Team at UK has been in contact with a physician at Johns Hopkins regarding Mark's two failed kidney transplants. The team at Johns Hopkins is doing a research study on transplantation in individuals who present much like Mark. UK is sending Mark's medical record to Hopkins this week. There is no guarantee that Hopkins will accept Mark or will transplant him again. But, there is at least hope of another transplant for now. We should find out by the end of the month if Hopkins accepted the referral and (if so) when we will go to Baltimore. Please continue praying for Mark. If Hopkins decides Mark is not a candidate for another transplant, we will have to come to terms with being on dialysis for life. We will post information about the referral to Johns Hopkins as soon as we find out more!

Report from Cardiology/update on dialysis

2010-03-02T22:40:00.004-05:00

Mark saw the Cardiothoracic Surgeon yesterday at UK. Since being discharged in mid February, the Cardiothoracic Surgeon has monitored Mark's heart through various imaging tests. In addition, Mark has been taking an oral blood thinner to prohibit formation of any additional clots. The Cardiologist who read the imaging tests feel like the masses in Mark's heart are most likely clots. The clots are slightly-almost insignificantly smaller-than they were when Mark was hospitalized. Although the change is slight, the fact that the clots are smaller serves as evidence that they are indeed clots and not a tumor. Although having two clots in the heart is definitely worrisome, it was wonderful news to hear that the clots are smaller. The Cardiothoracic surgeon did not think that the clots would jeopardize Mark's candidacy for a future transplant. He will continue to monitor Mark although our next appointment with Cardiology is not for three months! Mark is back at UK tomorrow for removal of his midline used for the IV antibiotic. He will then go back to transplant later this month. Peritoneal dialysis seems to be working well. Mark feels much better than he has for months. Although doing a PD exchange every 6 hours is burdensome at times, it is well worth the sacrifice as Mark feels and looks great! Praise be to our God for this blessing!

We're home...traveling to Hazard for PD training

2010-02-04T11:35:00.002-05:00

Mark was discharged from UK Tuesday evening. As you would imagine, we were really anxious to get home and see Mark Thomas. A good friend offered us two great tickets to see UK play on Tuesday night. Much to my surprise, my husband-a huge UK fan- turned them down saying he would rather see Mark Thomas than John Wall! Yesterday, we traveled to Hazard for our first training session on peritoneal dialysis. We will be going to "PD Boot Camp" for at least 4 more days. We're hoping that the PD catheter will work without complication and that the weather will cooperate and we can travel over the mountain safely. Mark is completing blood work every day to continually monitor the consistency of his blood. He is now on an oral blood thinner. The cardiologists are continuing to monitor the clots in his heart. It is our understanding that the longer blood clots are present in your body the less likely they are to travel. The echocardiogram completed on Tuesday indicated no significant change in the size of the clots. The fact that the clots have not increased in size is great news. If the clots had grown or if new clots were present, Mark may have had to have open heart surgery. The presence of two clots is worrisome to say the least, but we are very thankful to avoid a major surgery. We're praying that the clots will resolve, but understand this may take time. As always, please pray for our family! We appreciate all the love and support from everyone. It has meant so much. We know God has a perfect plan for Mark. We are trying to trust in Him without losing patience or hope! Off to Hazard for now...I'll post more information about Mark's health soon!

Emotional day....may be discharged tomorrow

2010-02-01T17:01:00.002-05:00

Not much has changed with Mark's health since our last blog. Mark spent the weekend recovering from the surgery on Thursday. We celebrated my birthday on Friday and were able to visit with Mark Thomas and our family. On Thursday and Friday, Mark had some pretty significant pain in his abdomen from the placement of the peritoneal dialysis catheter. We learned today that the fistula that was created in Mark's forearm during surgery on Thursday is not functioning. The physicians suspect that Mark's clotting issue contributed to the fistula not working. Although we were aware of the potential threat blood clotting issues create for fistulas, we were really hopeful that the surgery would have been successful. It was difficult to hear that the fistula isn't working. It is our understanding that the veins and arteries used in creating fistulas can never be used in another fistula in the future. Thus,the fistula not working means that we lost one "life line" for Mark. As we mentioned in an earlier post, the intent of the surgery on Thursday was to create two types of dialysis accesses so that we would have two options for dialysis. The physicians talked about trying to repair the failed fistula or creating a new one. However, they decided against this...at least for right now. So, the plan is to continue monitoring Mark's blood work to make sure he is safe to go without dialysis at least for a few more days so the incisions around the catheter can heal and so we can be trained on peritoneal dialysis. We may be discharged tomorrow. At that point, we will go to Hazard for a 5 day training on peritoneal dialysis. Before we are discharged, we think that the cardiologists will complete another echocardiogram to gain more information about the clots in Mark's heart. We are uncertain if this will happen today or tomorrow. Today Mark had a mid-line placed in his arm to allow him to receive IV antibiotics when we are discharged. We will be trained on how to administer this drug as well. Please continue to pray for Mark. We are hoping that no problems arise with peritoneal dialysis!

Surgery is complete

2010-01-28T16:27:00.002-05:00

Mark's surgery is complete. He is now back in his room on the 8th floor. However, he is in significant pain. Please keep praying!

Surgery has started

2010-01-28T09:58:00.002-05:00

Mark is now in the OR for the surgery to create a fistula in his forearm and place a PD catheter in his abdomen. The surgery should take several hours to complete. The surgeon estimated it would be 4 or 5 hours before we would see Mark in the recovery room. Although we have not spoken to the Cardiologists, a resident told us yesterday that the echocardiogram they completed yesterday indicated no change in the blood clots in Mark's heart. We are anxious to hear what the Cardiologists' plans are for Mark's care. We were hopeful that the blood clots would have decreased in size, but understand that this may take time. The Transplant Team feels like the Cardiologists will repeat the echocardiogram sometime next week and continue to closely monitor Mark. Please lift Mark and our family up in prayer this morning. Rhonda, Larry, and I are anxiously awaiting the phone call from the OR nurse with an update on the surgery.

Praying, waiting, and planning

2010-01-25T11:59:00.006-05:00

Not much has changed since our last blog entry. Mark is scheduled to have surgery to place the PD catheter in his abdomen and to create a fistula in his forearm on Thursday. This will allow him to have two types of access for dialysis. Mark is also scheduled to have another echocardiogram on Wednesday. This will provide information about the effect of the blood thinner on the clots in his heart. I would imagine that the Cardiologist will then make a decision about whether or not Mark needs open heart surgery.

Mark's blood cultures are continuing to show that the infection has cleared. The Infectious Disease physicians have also been following Mark's case. They would like for him to receive IV antibiotics for the next 6 weeks. This would mean that Mark would be discharged with a "picc line" or "midline" which are a type of IV that can stay in your body for several weeks. This is problematic though because of issues with clotting and because the veins or arteries used in picc lines and midlines can never be used as an access for dialysis. So, we are trying to work something out where Mark will either receive home health or will go to a physician's office in Harlan to receive the IV when we are discharged.

The Team is also trying to make arrangements for us to be trained on peritoneal dialysis. Typically, patients and families receive a training on PD before the catheter is placed. Although I think we will be in the hospital through next weekend so that the Team can make sure the PD catheter is working, I am unsure if it will be possible for us to be trained before being discharged. We are trying to make arrangements to get trained by the dialysis clinic who follows Mark in Harlan. There was some talk of us getting trained in Lexington the week of February 1st by a different dialysis clinic. However, this would mean that we would be followed by a different Nephrologist and would have to travel to Lexington for all follow up appointments. We feel really comfortable with Mark's Nephrologist in Harlan and really like the nurses at his dialysis clinic. They all have been very supportive of Mark and have provided exceptional care. We are hopeful it will work out for us to stay under the care of Dr. Chandarana in Harlan.

As always, we thank you all for the prayers and support. We are trying to stay patient and calm. We know God is in control of this situation and that He has a good and perfect plan for our family. He will work out all the details. Today we received news that several of my colleagues at Harlan County Public Schools have donated sick days to me. This was an answered prayer as I had used my last day last Thursday. I don't have words to express my gratitude to my coworkers...so many gave me days last year during the transplants...the thought of others making such a sacrifice for my family is overwhelming. All we can do is say "thank you" and praise God for continuing to provide for our family.

Today's update: Plans for Mark's Care Developed, Surgery next week

2010-01-21T19:37:00.007-05:00

The Transplant Team made several decisions today and developed a plan for Mark's care while we are here. With respect to what the physicians believe are clots in Mark's heart, the plan has not changed. Mark is receiving the blood thinner heparin through his IV. The hope is that the blood thinners will prevent the clots from getting any bigger. Mark will have another echocardiogram next week. At that point, the Cardiologist and Cardiothoracic Surgeon will determine if the blood thinners are working. As we posted yesterday, if the clots are any larger when they repeat the echocardiogram next week, open heart surgery may be required.

Yesterday evening, Mark's potassium was very high. The Team had hoped to avoid replacing the dialysis catheter for a few days as catheters often set up infection. Also, they wanted the antibiotics to have time to completely clear his infection. However, going without dialysis was not an option. So, last night, the Nephrologist placed a temporary dialysis catheter in his groin. Mark had dialysis last night.

Another complex issue with Mark's health is deciding upon a long term dialysis plan. All of the dialysis options have their own risks and none of them seem to really be a great solution given Mark's history. Hemo dialysis, or the type of dialysis that uses the blood and is typically completed at a dialysis clinic, typically involves use of a vascular access or fistula in the forearm. Mark does not have a fistula. This is why he has been using a temporary catheter in the chest that is tunneled next to the heart. However, Mark's clots in the heart make continued use of a tunneled catheter risky and problematic. Catheters can be tunneled other places like the groin. However, catheters in the groin are not used for long as they often are easier to get infected. Creating a fistula in the arm requires a surgery. The surgeon joins an artery and vein in the forearm. However, even after the fistula is created, it cannot be used right away. It may take several weeks or even months for the fistula to mature and grow big enough to be used in dialysis. Although fistulas are less likely than catheters to become infected, they are prone to clot. This is a real concern with Mark given Mark's history of clotting. Peritoneal dialysis, or the type of dialysis that uses the peritoneal cavity or "gut" and is done at home, is the other dialysis option for Mark. Peritoneal dialysis involves the use of a catheter in the abdomen. Placement of this catheter requires surgery. The catheter cannot be used right away either. However, it typically can be used sooner than a fistula. However, because peritoneal dialysis uses the "gut", Mark's repaired hernia site and placement of the meshes over the hernia and transplanted kidney may make peritoneal dialysis difficult. In addition to these concerns, it is uncertain whether Mark's infection has cleared. Although Mark's blood is getting drawn each day, it takes several days for cultures to "grow" infection. The catheter that was removed on Tuesday did have some type of infection on it. The Transplant Team is consulting with the Infectious Disease physicians to determine what type of antibiotics are needed to treat Mark. They are also trying to decide how long they should wait before any surgery is completed. Typically, physicians do not want to do surgery with a known infection.

With all of these things taken into consideration, the Team decided to continue the blood thinners and IV antibiotics over the weekend and schedule a surgery next week (possibly Wednesday or Thursday) to place a fistula in Mark's arm and a catheter in Mark's abdomen for peritoneal dialysis. We will be trained on peritoneal dialysis while we are here. They will not be tunneling another catheter in the chest. If all goes well, we will leave here on peritoneal dialysis.

Thanks for all the prayers, thoughts, emails, and calls. We appreciate all the support and are asking for continued prayer that the clots in Mark's heart will not require surgery to treat. We will update the blog as we learn the exact date of the surgery next week.

Report from Cardiothoracic Team

2010-01-20T20:40:00.003-05:00

The Transplant Team and Cardiothoracic Surgeon visited Mark this afternoon. They are still unsure exactly what the masses are in Mark's heart. However, their best guess is that they are clots given Mark's history with clotting. (Remember that immediately after my kidney was placed in Mark's body back in March, his body clotted it off). They are treating Mark right now with blood thinners and will monitor him over the next few days to see how he responds. If the blood thinners are successful, the clots will not increase in size. The Team will then wean Mark from the IV blood thinners to a blood thinner taken by mouth. If the blood thinners are not successful and the clots continue to increase in size, open heart surgery may be required. I am unsure how long it will take for the Team to make a decision about if the blood thinners are working. Please keep praying that God's name will be glorified in this situation.

Results from TEE

2010-01-20T12:44:00.005-05:00

Mark had a TEE (transesophageal endocardiography) this morning. The test involved placing a scope down Mark's throat to the esophagus to allow the Cardiologist to view Mark's heart from behind. As we mentioned last night, the echocardiogram they did yesterday showed a mass in one of the chambers of his heart. The TEE was done today to get a better view of the mass in an effort to determine what it is. Unfortunately, the TEE indicated the presence of another abnormality or mass in the superior vena cava or SVC which is a vein that leads to the heart. In addition, the Cardiologist is still uncertain exactly what the masses are. They could be clots, vegetations (a collection of bacteria, platelets, proteins, etc.), or a combination of the two. So, right now, we are waiting for the Transplant Team to consult with the Cardiologists to determine what to do. They started Mark on a blood thinner. Please continue to pray.

Urgent Request for Prayer

2010-01-19T17:19:00.003-05:00

A lot has happened today. Here is a brief summary: Mark had surgery this afternoon to remove the catheter in his chest for dialysis. He also had an echocardiogram this morning to make sure the infection was not in a valve of his heart. The echo came back with a potential abnormality. They repeated the echo after surgery this afternoon and continued to see a mass in one of the chambers of the heart. They are thinking it could be a benign tumor that only needs monitoring OR it could be a "vegetation" that requires open heart surgery. They are completing another type of heart imaging test in the morning to find out more. We'll know tomorrow afternoon which it is. We are asking for prayer as we are fearful that we may be facing a major surgery in the near future. On a positive note, the scan they did last night showed that Mark does not have a hernia around the transplanted kidney. The Team does not think removing the transplanted kidney will be necessary. We will post more information as we find out more...please keep praying!

Admitted due to lingering infection

2010-01-18T18:55:00.009-05:00

As many of you know, Mark has been struggling with an infection for several weeks now. He has felt very badly battling with fever, fatigue, nausea, decreased appetite, etc. His Nephrologist at dialysis has been treating him with IV antibiotics over the past few weeks. However, his body does not seem to be responding to the antibiotics as his cultures are continuing to indicate the presence of infection. Because of this, the dialysis Nephrologist sent us to UK to be admitted in order for the Transplant Team to investigate the cause and location of the infection. The catheter used for dialysis, the mesh around the transplanted kidney, and the mesh around Mark's repaired hernia could all possibly be the location of the infection. If the catheter is the site of infection, Mark will undergo a procedure to replace the catheter. Surgery will be required if the infection is in a mesh. If this is the case, I anticipate that the Team will explore removing the transplanted kidney as they have talked about this at his past visit. As we mentioned in a previous blog, Mark's hernia has returned. We were scheduled for a consultation on Thursday for the surgery to repair the hernia. So, we're hopeful that if Mark has to have a surgery to remove a mesh, they can repair the hernia at the same time. We are in the ER right now and hope to be in a room on the transplant floor sometime soon. Please continue to pray for Mark!

No news is good news...at least for now!

2009-12-09T21:07:00.005-05:00

Once again, I'll start by apologizing for not updating Mark's kidney transplant blog for several weeks. However, as my title states, there is really no new news to report...at least not right now. We managed to stay out of the hospital over the Thanksgiving holiday and are hoping to do the same over Christmas break. Since being discharged from the hospital in October, Mark has resumed dialysis three times weekly. While dialysis is a blessing in the sense that it does the job Mark's kidneys cannot do, it is also a nuisance. Mark has a lot of adverse side effects from dialysis (nausea, fatigue, etc.). Mark has continued with his visits to the transplant clinic-although the frequency of the visits to Lexington has decreased. At his last visit, the Team expressed concern with his abdomen. Mark's abdomen is beginning to protrude in the same place it did prior to his hernia surgery. The Team is thinking that either Mark's hernia has returned or he has developed an issue with the "mesh" they placed around Justin's kidney back in June. Thus, they completed an ultrasound last Thursday. We are awaiting these results. If the hernia has returned, the Team will complete a surgery to repair the hernia. They have also discussed removing the transplanted kidney during the same surgery as the function of the kidney is still in question. Although the last scan indicated the kidney is perfused or is receiving blood flow, the kidney has never really "kicked in" and has not helped to improve Mark's overall kidney function. Removing Justin's kidney is a really sad thought. It would mean that the Team has officially given up on the kidney ever working. However, it would allow Mark to stop taking all of the anti-rejection medications. The Team is also considering placing the PD catheter during the surgery as well. This would allow Mark to begin doing dialysis at home. If you recall, Mark has been attempting to get the PD catheter placed for several months now. This has not happened due to his frequent hospitalizations and infections. It is our understanding that he would have to be off of the antibiotics used to treat infections for several weeks before the surgery to place the catheter could be scheduled. Although the thought of another surgery is very troubling, we are trying to stay focused on the positives. If indeed one surgery can do all three things (repair the hernia, remove the kidney, place the PD catheter), then we are eager to get this behind us. We will keep you updated on the results of the ultrasound and plans for the future.

Unexpectedly in ICU

2009-10-24T08:17:00.004-04:00

Mark spent three days in ICU at Harlan ARH this week. Last week, the Nephrologist who is following Mark at the dialysis clinic in Harlan noticed a very slight increase in his kidney function. Mark's creatinine had dropped to 3.8. He was making plenty of urine. His overall kidney function was estimated to be approximately 25%. Anything below 15% requires dialysis. Because Mark's kidney function was higher than 20%, his Nephrologist wanted to experiment with taking him off of dialysis to see if his kidneys could work independently. When we heard this news last week, we decided to be cautiously happy. We understood that taking Mark off of dialysis could only be temporary. The doctor was planning on monitoring Mark closely and deciding week to week whether or not he would need dialysis. We also understood that a creatinine level of 3.8 is not a significant enough of a drop to think that the transplanted kidney was working. Kidney function of 25% is still considered to be stage four renal disease. Well....on Wednesday morning, Mark went for the blood work the Nephrologist had ordered. He had been feeling fine all week. He had not experienced any symptoms of uremia or elevated potassium. Around noon, the results from the blood work came back. The Nephrologist called Mark and told him to report to the ER as soon as possible. His potassium level and creatinine levels had jumped back up. In fact, his potassium was in a dangerous level-high enough to cause a heart attack. So, off we went to Harlan's ER. The physician at ARH gave Mark several medications to control his potassium. Mark was dialyzed as an inpatient also. His potassium began to drop. However, Mark's Neprhologist decided to keep him overnight for continued monitoring. They decided to place him in ICU... I think partly because of the heart monitoring and partly because of the fact that Mark is immunosuppressed and there is a high incidence of H1N1 in Harlan. On Thursday, Mark's potassium had dropped to a normal level at the 6:00am blood work, but increased by noon. So, they decided to keep him another night. From that point, each blood sample indicated that his potassium was controlled. So, we were discharged yesterday afternoon. We are very happy to be home. However, our spirits are a little low. We are beyond disappointed that Mark's body could not tolerate the absence of dialysis. In addition, several weeks ago, we had booked a weekend trip with some of our friends. We had really been looking forward to this "retreat". However, the doctor recommended that we stay at home. We are also really concerned that we didn't realize that Mark's levels were so high. As I mentioned above, he was feeling fine and did not have any symptoms of elevated potassium. This is really scary and causes us both a great deal of anxiety. As always, I'm asking for continued prayer for our family.

We're home!

2009-09-25T17:03:00.003-04:00

I am thrilled to report that we are home! Mark was discharged from UK late yesterday afternoon. The team decided that an oral antibiotic was sufficient in treating any residual infection. The Team was considering placing a "picc line" in Mark's forearm to allow him to continue receiving an IV antibiotic. However, placement of a picc line can be problematic for dialysis patients. Use of picc lines can potentially ruin the arteries/veins that may be used in creating a vascular access for dialysis. We were relieved to avoid this! Mark will continue to have blood cultures drawn when he is at the dialysis clinic to ensure that no bacteria is growing. Thanks for all the thoughts and prayers over the past week! In addition to Mark feeling so bad, it was really difficult to be away from Mark Thomas for an entire week! We are looking forward to a weekend at home with our little guy!

Hospitalized for a few more days

2009-09-23T19:01:00.003-04:00

Mark's new catheter was placed in his chest this morning. We are thankful that this is behind us. Mark experienced a great deal of pain when the first catheter was placed. The placement of the catheter this morning was not as bad as the initial one, but Mark is pretty sore. As we've mentioned in previous posts, the Cannon catheter is placed in the chest-just below the collar bone. The catheter is tunneled down into the chest and serves as a temporary port for dialysis. Each time Mark is dialyzed, the catheter is used as the dialysis machine pumps his blood out, cleans it, and pumps it back into his body. The catheter is considered as a "temporary port" because it is not meant to stay in a patient's body more than a few months due to the risk of infection...which we know can happen easily!

It was our understanding that the Transplant Team's plan was to place the new catheter, dialyze Mark, and send him home on oral antibiotics. This morning, the cultures back from the lab that had been drawn from days past no longer indicated the presence of any infection. However, this afternoon, the Team received another report from the lab on a culture drawn a few days ago from behind Mark's old catheter (the one that was removed on Monday). This culture showed the presence of bacteria. Thus, we will have to stay here to receive more antibiotics via IV. This was discouraging news as we were ready to go home! Please pray that the infection clears. We are hopeful that the cultures drawn today will not show any infection. If the infection does not go away and the catheter no longer seems like the cause of infection, the Team will have to consider doing something more invasive to identify a new location or cause of the infection.

Difficult day...but at least the catheter is out!

2009-09-21T22:13:00.005-04:00

Today has been difficult for Mark. He started feeling pretty bad late last night and early this morning. Mark went to dialysis around 7:30 this morning. While he was receiving dialysis, he started having rigors and became very nauseous. It was then that the Team decided that the catheter used for dialysis had to be removed. Using the catheter for dialysis seemed to exacerbate Mark's symptoms. I guess this served as proof that the infection had contaminated the catheter. So, the catheter was removed late this afternoon. We were very nervous about the removal of the catheter. However, after its removal, Mark said it wasn't as bad as he had anticipated. The plan now is to wait and see how Mark's blood work looks after having the catheter removed and receiving the IV antibiotics. Hopefully, Mark's white blood cell count will continue to drop. This would mean that we could go home with an antibiotic to help fight the infection. As we mentioned in an earlier post, there is some concern about the presence of an abscess around the hernia repair site. If Mark's blood work does not show improvement, the Team will have to consider something more invasive (i.e. sampling the fluid around the hernia repair site or surgery to reopen the hernia repair site to remove any abscess).

Mark will have another catheter placed in his chest on Wednesday. When Mark had the catheter placed in June, it was painful and nerve wracking. The catheter is "tunneled" down next to patient's heart. The patient is given some type of sedative, but is not under general anesthesia. Mark is not looking forward to this. Please pray for him-especially on Wednesday.

Despite not knowing what lies ahead, Mark and I are trying to stay positive. I've said it before, and I'll say it again, Mark is the strongest and bravest man I know. He has been through a great deal. I admire his strength. We spent some time this evening reading Paul's letter to the Thessalonian church...it gave us comfort to see how other believers have dealt with affliction and suffering. We studied the definition of endure...the Greek word translated for endure is anecho which means "to patiently wait." We know that God gives inner strength to the believer to enable him to be steadfast, to patiently wait in the midst of difficult circumstances. We are just praying for that inner strength!!!

Update on Mark

2009-09-20T09:49:00.003-04:00

We're happy to be out of the ER and in a room on the Transplant Floor. The cultures are showing Mark has a rare infection that only immunosuppressed patients can acquire. The exact location/cause of the infection is still undetermined. Mark's incision site around the hernia was somewhat red on Friday morning. The Team ordered an ultrasound to investigate if the infection was related to the hernia repair. The ultrasound of the incision from Mark's hernia repair showed a potential abnormality. However, Mark's abdomen no longer appears as red. He feels much better and seems to be responding to the IV antibiotics. To further investigate the hernia repair site, the Team completed a scan late last night to help identify any abscess. At present, we are waiting for the results of this scan. PLEASE PRAY...if the scan shows an abscess, Mark would have to undergo another surgery! The Team decided to wait to remove the catheter in Mark's chest used for dialysis. Typically, when a patient has a temporary port and an infection, the Team will remove the port and not replace it for a few days. This allows the patient to go a few days without a foreign object like a plastic catheter in his or her blood stream. However, Mark's potassium is elevated. He may need dialysis tomorrow to help combat the potassium. Given his high potassium and the fact that the scan results are not yet complete, the Team will make a decision later today or tomorrow about whether or not to remove the catheter. As always, please pray for Mark! His spirits are low-especially considering we could see Commonwealth stadium from our room on the 8th floor but could not watch the game-even on television! Mark is beyond ready to be back at home!

Back at UK

2009-09-18T17:22:00.004-04:00

Unfortunately, Mark is back at UK. He had a rough past couple of days-feeling very nauseous and weak. Yesterday evening he had a fever and starting having rigors. We called the Transplant Team as this can be a sign of infection or rejection. The Team advised us to come to the ER at UK. We arrived at the ER at around 9:30 last night and we are still here!!! We've been informed that a room on the Transplant wing has been assigned to us. I guess the process of cleaning and preparing a room for a transplant patient is complex. Hopefully, this will be finished soon! It seems so crazy to have a transplant patient wait in such a germy environment!

The blood work completed on Mark last night shows an elevation in his white blood cell count. The physicians are trying to determine the location and cause of infection. The infection could be around the incision site from the hernia repair. This would be the worst case scenario as it may require a surgery to remove the "mesh" used to repair the hernia. The infection could also be from the catheter in Mark's chest used for dialysis. Temporary ports or catheters in the chest for dialysis frequently serve as an infection site for patients who are immunosuppressed. If this is the case, the Team would remove the catheter and replace it in another location. This is also a troublesome scenario as Mark experienced a great deal of discomfort when the catheter was originally placed in his chest. It is my understanding that the infection could also be from another reason (i.e. exposure to bacteria, etc.). This is probably the least likely given Mark's situation, but it is the situation for which we are hoping! As you remember, Mark was hospitalized in late July for an infection. This infection was not due to his catheter and was treated with strong IV antibiotics. He was in the hospital for about 3 days and was released. Hopefully, this will happen again! We will update the blog as we learn more. Please keep praying for Mark!

We're home!

2009-09-04T23:10:00.003-04:00

Mark was discharged from the hospital yesterday evening. His potassium, creatinine, and blood pressure were high yesterday morning. The Team would not discharge him until his potassium dropped to a safer level. Because of the high levels of potassium and creatinine, Mark received dialysis while at UK. The Team is now trying to figure out how much dialysis is necessary (one time weekly, two times weekly, or three times weekly). It seems that the transplanted kidney is working better than expected prior to the scan last Thursday, but it isn't working well enough to avoid dialysis all together. Mark will go back to the Transplant Clinic on Thursday. Hopefully, we'll find out more information then! We plan on enjoying a great Labor Day weekend at home with friends and family. We hope everyone does the same! Thanks for all the prayers!

Surgery is complete!

2009-09-02T18:37:00.003-04:00

The surgery is complete! All went well! There were no complications. Dr. Gedaly said the hernia was quite large, but he anticipates that Mark will recover from the surgery with no problem. Mark has been in the Post Anesthesia Care Unit most of the afternoon. Transplant patients are usually placed in rooms that require special preparation due to the patient's immunosuppression. We had to wait until the room was ready. However, we're now in room 832. We should find out in the morning what the Team will do about Mark's increase in creatinine. Mark is in some significant pain. Please pray for him tonight!

Mark is in the OR

2009-09-02T10:27:00.004-04:00

Mark just left the prep room and is now in the operating room. The surgery should take about 2 hours. I will update the blog when he is out of surgery. Please keep praying!

Surgery update

2009-09-02T07:32:00.003-04:00

Mark has been instructed to report to UK at 8:45 this morning. His hernia surgery is the second scheduled surgery today unless an emergency surgery causes it to be postponed. If it works out that his surgery truly is second, I am thinking it may be completed around 11:30 or 12:00. Yesterday Mark's blood work indicated an increase in creatinine. It was 4.0 last Thursday and is now 4.9. This is not good news-we will find out today what the Transplant Team will decide about dialysis. As always, we are asking for prayer. Please pray specifically for Dr. Roberto Gedaly-the Transplant Surgeon who is completing the surgery. Also, please pray for the Anesthesiologist who will be assigned to Mark's case today. Mark had difficulty waking from the anesthesia during the first transplant. So, we are always especially apprehensive about general anesthesia! Also, please pray for my brave husband. Although he is the bravest and strongest man I know, it is difficult to see him face his sixth surgery since March! I will post more as we learn more this morning. I am hopeful that I can get our laptop to pick up the wireless signal at UK today!

Airlifted to UK last night...home today

2009-08-30T15:23:00.002-04:00

As many of you have heard, Mark was airlifted to UK last night around 9:00pm. We had been enjoying a typical Saturday in Harlan. Around 4:00, Mark started having severe abdominal pain. He also started vomiting (a sign of uremia/kidney failure). We called the Transplant Team's 24 hour nurse who advised us to go to the local ER. At ARH, Mark's creatinine had increased to 5.1. Not only had Mark's creatinine's levels increased, but his potassium was very high. Uncontrolled potassium can lead to heart problems. ARH gave Mark medications to help control the potassium and pain. They also completed x-rays of the hernia around the transplanted kidney. The x-rays indicated that his bowels in the herniated area may have become entangled or obstructed. Given the elevated creatinine, potassium, and the results of the x-rays, ARH made the decision to airlift him to UK. When Mark left ARH, we were under the impression that he may need emergency surgery to repair the hernia. However, this was not needed. When he arrived at UK, the ER physicians repeated the x-rays and blood work. The x-rays showed only air pockets in the hernia. Mark's creatinine had dropped down to 4.6 and his potassium was much better controlled. He was only in minor pain. So, around 2:00am, we were discharged! The ER physicians expressed that you can never be too cautious with transplant recipients. They did not have an absolute explanation for what caused the severe pain or what caused the results of the x-rays to differ. Personally, I do not believe Mark's pain was due to air pockets in the hernia. I don't think ARH made a mistake in the x-rays or misjudged sending him to UK. I suspect that Mark's bowels were obstructed or entangled initially. Maybe the pain medication allowed him to relax which helped the bowels return to a more normal position. To me, the best explanation is that the Lord performed a miracle on Mark's behalf. So, I invite you to join me in praising our Lord for His mercifulness!

Good news at last!!! Please keep praying!!!

2009-08-27T21:23:00.004-04:00

I am so happy to report that we received good news from the Transplant Team today!!! As I posted in the previous blog, Mark has a hernia around the transplanted kidney. Before scheduling the surgery to repair the hernia, the Transplant Team wanted to complete a new scan of the transplanted kidney. If the scan had shown decreased blood flow to the transplanted kidney, the surgeon would have removed the transplanted kidney when repairing the hernia. However, the scan today indicated an improvement in blood flow since the last scan! At this point, we are cautiously happy! Mark's creatinine is around 4.0. This is still high. As we've mentioned in previous posts, successful kidney transplants usually result in creatinine dropping to the 1.0 to 2.0 range. The Team decided to have Mark skip two dialysis sessions-the session on Friday and Monday. They will recheck his blood work on Tuesday. I suppose this will give them information about how the transplanted kidney is filtering waste without the help of dialysis. Upon receiving the results of his blood work, they will reassess the situation. Mark is scheduled for the surgery to repair the hernia on Wednesday of next week. His hernia is quite large-so he will have to spend at least one night in the hospital. As always, we are asking for continued prayer. We are praising God for the encouraging news we received today. In addition, we are praying that the blood work on Tuesday indicates continued improvement and a drop in creatinine. Finally, we are praying for the surgery to go smoothly on Wednesday.

Update on Mark

2009-08-16T23:12:00.008-04:00

Once again, I'll start by apologizing for not updating the blog in several weeks. It has been really hectic at our home lately. As I mentioned in the previous post, we had hard wood floors installed in our foyer, living room, and dining room. What we thought would be a three day project turned into several weeks! We decided to have a wall knocked out and to install wainscoting in the dining room. Despite the fact that our house has been a huge mess for several weeks now, we are thrilled with the results!

On Wednesday of the week before last, Mark had a appointment with the physician who places catheters for peritoneal dialysis (i.e. the type of dialysis that can be done at home while you sleep). Remember that the infection Mark had contracted a few weeks ago postponed his appointment with this surgeon. We were hopeful that the surgeon would schedule the surgery the following week. However, he expressed concern about the surgery due to Mark's abdomen being swollen and somewhat protruded around the site where Justin's kidney was placed. There was also some concern about the placement of the "mesh" the Transplant Surgeon had placed around Justin's kidney during the second surgery in June. Thus, the surgeon wanted to wait until he had spoken with the Transplant Team before scheduling the surgery.

Mark had his check up with the Transplant Team on Thursday of last week. We were eager to meet with the Team to find out about the surgery for the peritoneal catheter. In addition, when we had attended the weekly check-up prior to this visit, Mark was seen by a Nephrologist who is not the physician who is following our case. This physician had no new information and couldn't answer any of our questions. Although Mark was seen on Thursday by Dr. Waid-the Nephrologist who is following his case, we unfortunately received some bad news. Mark has a hernia around the transplanted kidney. Not only does this mean that he cannot have the surgery to place the catheter for peritoneal dialysis anytime soon, it means that Mark will have to undergo two different surgeries sometime in the near future. One surgery will be completed to repair the hernia. This will be an inpatient surgery requiring general anesthesia. Secondly, Mark will have a surgery to create a fistula in his forearm to allow him to continue with hemodialysis. Remember that hemodialysis is the type of dialysis that uses the blood and is typically completed at a dialysis center. At present, Mark has a catheter in his chest to allow for hemodialysis. However, this catheter serves as a temporary port. The type of catheter in his chest frequently causes infection. Thus, if a patient is going to be on dialysis for an extended period of time, a more permanent port is created. The fistula will be created by joining an artery and vein in his forearm. This surgery will be outpatient and requires only a local anesthetic. Needless to say, Thursday was a rough day for us. Hemodialysis seems to be very draining for Mark-both physically and mentally. Going to a center for 4 hours three times weekly with people who are much older and seem much sicker than you would have to be difficult. In addition, hemodialysis requires a strict diet that is frustrating at times. We were really looking forward to being able to complete dialysis at home. Mark is eager to go back to work. Peritoneal dialysis would have allowed him to do this. We were viewing the surgery for the catheter for peritoneal dialysis as one step closer to a more normal lifestyle. So, Thursday was a bad day to say the least.

We did find out some more information about the sample of Mark's blood that was sent to UCLA and John Hopkins for testing. I will post more information on this sometime soon. It is not necessarily good news, but at least it is news! It is kind of complex and difficult to understand. I'll do some more reading before I attempt to blog about it! As always, thanks for the continued prayers.

Despite the twists and turns of this journey, I still believe in the power of prayer and the power of our God. I am still praying that God will place His healing hand upon the transplanted kidney and allow it to start working! I understand this may be a long shot. I know this may sound cliche, but I believe in miracles. A miracle is exactly what Mark needs. So, I'm not going to stop praying for one despite how bad this situation may seem. Please don't stop praying for Mark!

We're home!

2009-07-22T15:46:00.006-04:00

Just wanted to let everyone know that Mark was discharged from the hospital on Monday afternoon. He was put on IV antibiotics throughout the weekend. When we were admitted on Friday, the physicians were suspicious that the catheter in Mark's chest used for dialysis may be a source of infection. Luckily, the team decided that removing the catheter was not necessary! At one point over the weekend, we thought that Mark would go home on IV antibiotics. This would have meant placing another port in his arm and having Home Health come and train us on how to use the IV port. But, the infection Mark has is responsive to antibiotics you take by mouth. So, we avoided this also! Mark will be on oral antibiotics for 14 days. This will postpone his surgery that was tentatively scheduled for next week to place the peritoneal dialysis catheter in his abdomen. Since we were in Lexington on Monday, we do not have to go to the Transplant Clinic this week. So, we are happy to report that we are home for a while! My family has scheduled a mini-vacation to Gatlinburg this weekend to celebrate Mark and my brother Josh's birthday. So, we will be getting some much needed R and R from Friday until Monday!!! When we return from Gatlinburg, I'll be sure to post pictures of Mark Thomas. We are planning on taking him to the Aquarium. He is so excited about seeing "big sarks"(i.e."Big Sharks")!!

We are staying with my parent's this week. We are having hard wood installed in our home. Mark cannot be around the dust and debris. So, if you need us, please contact us by email or at my parent's home.

Readmitted with infection!

2009-07-18T21:50:00.004-04:00

Mark had his weekly check-up with the Transplant Team on Thursday. When we were at the clinic, he was running a high fever. The Team completed blood work and sent him for a chest X-ray. Mark had been feeling poorly for a few days. He had been experiencing tremors during the night and felt a little nauseous. However, after spending all day in the clinic, Mark started to feel a little better by mid-afternoon. In fact, Dr. Waid (Neprhologist with the Transplant Team) decided to send Mark home. His fever had dropped and the chest X-ray showed no problematic signs.

On Friday afternoon, Mark went to dialysis in Harlan. When he was there, the Transplant Team called and informed us that his blood work indicated infection. Because Mark is taking anti-rejection medications, his immune system is compromised, making it hard for his body to fight off any infections. Thus, the Team decided to admit him to administer IV antibiotics. It is likely that the port in Mark's chest used for dialysis is infected. We are thinking they will remove the port on Monday and replace it with another port maybe in a different location (forearm, other side of chest). Dr. Gedaly told us this morning that Mark may get to go home on Monday. Monday is Mark's birthday-so we're praying that we can spend it at home with Mark Thomas. Please keep praying for Mark!!!

Still praying for a miracle!

2009-07-05T19:02:00.007-04:00

As I looked at the blog this evening, I couldn't believe that so much time has passed since my last entry! Please forgive me-I know that several of you read our blog often. Here is an update of what has happened over the past week or so:

Mark was discharged from the hospital late in the afternoon on June 25th. He was dialyzed three times as an inpatient at UK. The Transplant Team decided he needed to continue with dialysis and arranged for him to receive dialysis at a dialysis clinic in Harlan. After spending that weekend at home, we reported to the dialysis clinic on Monday afternoon. We were impressed with the clinic in Harlan. The dietitian and social worker were very professional and knowledgeable. The dietitian spent a great deal of time on Monday educating us of the importance of obeying a restricted diet. As a hemodialysis patient, you must limit foods that contain a lot of "wastes" as it makes it more difficult for dialysis to cleanse your blood if your body is full of not only the waste your kidneys can't filter, but also what you are adding to it through your diet. This means we must limit sodium, potassium, and phosphorus. It is difficult to balance all of the restrictions. Foods that are low in one thing are high in others. I've spent a lot of time finding websites and cook books online to help.

On Wednesday, July 1st, we met with a general surgeon in Lexington who works with Mark's Nephrologist regarding peritoneal dialysis. He reviewed Mark's medical history and examined his abdomen to see if he is a candidate for peritoneal dialysis. Remember that this type of dialysis requires a catheter to be placed about an inch from the naval. It is more convenient than hemodialysis in that you can do it at home and do not have to obey as strict of a diet. The Surgeon said that Mark should be a candidate for peritoneal dialysis, but that it is too soon to schedule the surgery to place the catheter. He wants to give Mark's body more time to heal from the transplant and scheduled to see us at the end of the month. We suspected this is what he would say so we were not surprised. Mark was actually relieved to put off another surgery for a while!

On July 2nd, we went back to the Transplant clinic for Mark's weekly blood work and appointment with the Team. His creatinine had dropped back down to 5.0. This is a result of being on dialysis. Although Mark is retaining fluid around the transplanted kidney, his incision looked much better than it did when we were discharged. Before leaving the hospital on June 25th, Mark's incision had reopened due to his vomitting. The Team was concerned about the wound being infected. They restitched his incision and placed him on antibiotics. We were very happy to hear that his incision did not seem infected. If it had looked worse, the Team was considering another surgery. We are very thankful to avoid this!

We also learned that the Team had received the pathology report from biopsy sample they sent to UCLA. Unfortunately, the results indicated that Mark does not have antiendothelial antibodies. The presence of these rare antibodies are not necessarily a good thing, but they would explain why Mark's body is reacting the way it is to transplanted organs. Antiendothelial antibodies are not detected with the HLA crossmatch that is used during the living donor evaluation. It is also not detected in the anticoagulation evaluation Hematologists complete. When someone has antiendothelial antibodies, their body's immune system is almost "preloaded" in the sense that their immune system aggressively attacks any foreign body (i.e. a transplanted organ). The condition is rare, but the medical literature has documented the use of treatments like plasmapheresis and use of IGIV before a transplant to cleanse the body of the antibodies that seem to trigger the rejection. Remember that Mark received these treatments after the transplant in June. The Transplant Team expressed to us on several occasions that they really thought that Mark perhaps did have antiendothelial antibodies. They had talked about sending us to the experts in the field on antiendothelial antibodies. The fact that Mark doesn't have these antibodies is really bad news. It means that the Transplant Team really does not have any explanation for what has happened with either transplant. In addition, unless the Team comes up with some other theory for why Mark's body is rejecting kidneys so aggressively so quickly and not responding to treatments that typically help, they will likely not consider him a candidate for another transplant in the future. This would mean Mark would spend the rest of his life on dialysis. As you might imagine, this has been difficult news to hear for all of us. At this point, the Transplant Team has decided to repeat some of the testing in hopes of learning more. They will continue to monitor Mark's blood work. I titled our post "Still praying for a miracle" because I'm continuing to pray that Justin's kidney will start working. This would not only be a miracle, but it would be an answer to all of our problems.

Mark is continuing to battle constant nausea and digestive discomfort. This is often a side effect of antirejection medication. In addition, dialysis can cause nausea. Please continue to pray for Mark. He is going to see a Urologist on Wednesday to remove the stent that is placed between the transplanted ureter and his bladder. The ureter is the structure that connects the kidney and bladder. It is an outpatient procedure that only takes a few minutes, but is very uncomfortable. I'll post more information as we learn more. We don't see the Transplant Team this week. However, we will see them next week.

Beginning Dialysis

2009-06-23T17:21:00.005-04:00

This morning a deep line was placed in Mark's neck so that hemodialysis can begin. The procedure to place the line was uncomfortable for Mark. They numbed the area with a topical anesthetic, but did not want to give him any type of sedation due to his past history with anesthesia. The deep line looks a little different than the one he had last week. This one is "tunneled" so that there is less chance of infection and so that it can be in place longer. Mark started dialysis this afternoon. At this point, the Transplant Team is planning on letting Mark receive dialysis today, tomorrow, and Thursday. They will continue to monitor Mark's blood/creatinine levels and will decide after Thursday if he will need to continue with dialysis. If the Transplant Team decides that he will need to stay on dialysis for an extended period of time, they will place an access port in his body. For hemodialysis, the physicians connect an artery and vein in the forearm. For peritoneal dialysis, a catheter is placed in the abdomen. Mark's preference is peritoneal dialysis. Placing the catheter for peritoneal dialysis requires surgery. As you might expect, we're praying that the dialysis Mark receives this week will help Justin's kidney to start working so that Mark can avoid another surgery!

As I mentioned in an earlier post, the Transplant Team sent a sample from the kidney biopsy to a Pathologist in California. The Transplant Team has consulted with several other transplant surgeons in other hospitals. They are thinking that Mark may have antiendothelial antibodies that are triggering his rejection to transplanted kidneys. This is a very rare condition that makes transplantation difficult. The Team is still awaiting the results. I will post the results as soon as we know more.

Please pray for God's peace for our family. Please pray specifically for both of our mothers-Rhonda and Tish- as this situation has been extremely difficult for both of them.

Readmitted/Dialysis

2009-06-22T11:34:00.003-04:00

Mark is being readmitted to the hospital today. He had an appointment this morning at the Transplant Clinic. Unfortunately, his creatinine levels have jumped pretty significantly. They were 5.7 when we left the hospital last Thursday and are now up to 7.3. This means that he is going to start dialysis. We are waiting for the admission paperwork to be completed. Then, we'll probably be back up on the 8th floor. One of the physicians will place a "deep line" in Mark's neck. This will serve as a temporary means for the dialysis. I think that they will place a more permanent port later this week. There are 2 types of dialysis: hemodialysis that uses the blood and peritoneal that utilizes the peritoneal cavity. Both require an access "port" to allow for the fluid to exit the body. However, it takes a few weeks after placement for it to be used. In the mean time, the deep line will be used. Mark wants to go on peritoneal dialysis. This type of dialysis can be completed at home. I'm unsure if the placement of the peritoneal catheter requires general or local anesthesia. I'll post more information as we find out what will happen. I'm thinking Mark will be in the hospital until the weekend. Please keep praying for Mark!!!

Heading home until Monday!

2009-06-18T13:59:00.006-04:00

The scan of the transplanted kidney indicated that there is still blood flow. The perfusion is poor, but the kidney is receiving some blood. Despite the blood flow and use of anti rejection medications, Mark's blood work is continuing to show that the transplanted kidney is not working as well as we had hoped. His creatinine levels are back up to where they were before the transplant-around 5.0. Although the kidney is not functioning perfectly, we are thankful that there is still blood flow. We're happy to be going home with Justin's kidney as this means that there is still a small chance that it may one day recover. It will be a "waiting game" for quite a while as the Transplant Team will continue to monitor Mark to decide if the use of anti rejection medications and other treatments (which carry their own risks) are really helping and if continued use of the medications is worth the risk involved. The Team will also monitor Mark to determine if and when he'll need to go on dialysis. So, at this point, we're heading home until Monday.

The Transplant Team has sent Mark's kidney biopsy and blood work to several other Transplant Clinics in hopes of learning what seems to be going wrong. Please pray that some type of answer is found. If this transplant is deemed unsuccessful and no type of conclusion is found, Mark may no longer be a candidate for transplantation. This would mean life on dialysis.

Mark's issues with digestion are getting better. He is no where near feeling "normal" or ready to eat three meals a day, but things are improving slowly. Mark is feeling weak. He's lost about 25 pounds. His spirits are low as well. We're hoping that he can regain his strength as he is able to eat more and rest more comfortably at home.

Please don't stop praying!

Update on Mark

2009-06-17T21:12:00.003-04:00

I'm happy to report that Mark has only thrown up two times since this morning! I'm keeping my fingers crossed that he will have a better, more restful night tonight. His bowels seem to no longer be as obstructed as they were initially. However, he is still cramping and in pain. He was able to eat a few bites of chicken noodle soup today. In addition, he was able to lay still long enough for the renal scan this afternoon. We'll find out the results in the morning. We're praying that the kidney is still perfused. If so, we may go home soon! Mark would be monitored at the Transplant Clinic two to three times weekly and would continue with the anti rejection medications in hopes that the kidney will start working. If the scan shows that the kidney is not perfused, the Team will most likely remove it. This would mean another surgery which would make the issues with Mark's bowels even more difficult as the use of anesthesia slows down the digestive system. Thanks for all the prayers-we've really needed them. We'll update the blog as soon as we learn more in the morning.

More rough nights

2009-06-16T19:12:00.004-04:00

Mark is still in a great deal of discomfort. He has been vomiting and unable to drink or eat since Saturday. As you might imagine, he can't rest and is really weak at this point. The evaluation of Mark's kidneys is kind of on hold until everything with his bowels are resolved. Please continue praying for Mark.

Rough weekend

2009-06-14T22:05:00.002-04:00

Mark has had an extremely rough weekend. He has been vomiting since Saturday morning. They think his bowels may be obstructed. Please pray for Mark as he is in a great deal of pain and discomfort. He did not sleep last night. The nurses' attempts to help his bowels move have been very uncomfortable and unsuccessful. If you are planning on visiting, please call our cell phone first. We do not mean to be rude, but Mark is in a very tough place right now and has not felt like any company. The Team had planned on re-scanning Mark's kidneys tomorrow morning. But, I'm thinking they will postpone this until the other issues are resolved. Please continue to pray for Mark.

Praying and Waiting

2009-06-13T13:58:00.004-04:00

Not much has changed since our last blog on Thursday. Mark received plasmapheresis yesterday evening. He also received IVIG and some other anti-rejection medications through his IV. His creatinine levels are essentially the same. Yesterday, it was up to 4.2. Today, it is 4.0. The Transplant Team is thinking that Mark's kidney function may have reached a plateau at around the 3.9 to 4.0 point. So, they are thinking of discontinuing the plasmapheresis as it seems to not be lowering his levels as they had hoped. We are under the impression that Mark will will remain in the hospital at least until Monday or Tuesday. The Team will monitor his kidney function without the plasmapheresis. I think they are going to do another scan of his kidney Monday morning. As long as there is blood flow into the transplanted kidney, they will not remove the kidney. I would imagine if his levels stay around the same point and there is blood flow to the kidney, Mark will be discharged to home. He would then be monitored until the point where he will need dialysis.

We have heard of some patients who have gone home and then experienced an increase in kidney function. Sometimes it takes a while for the medications to kick in and sometimes dialysis can "jump start" a kidney. So, there is some hope. The amount of hope seems to diminish each day that Mark's creatinine levels are not dropping, but there is still hope. In March, there wasn't hope for the transplanted kidney to work. So, we are thankful for a possibility of it working, despite how small that possibility may be. We're also thankful that his levels are not increasing at an alarming rate.

As you might imagine, this is an extremely difficult situation. We are trying to stay positive, but at the same time we're trying to prepare ourselves for any outcome. Some moments are easier than others. We appreciate all of your prayers and ask for continued prayer for God's healing and peace.

Praying for a miracle

2009-06-11T21:15:00.000-04:00

Here is the latest on Mark and Justin:

1. The scan that was completed on the transplanted kidney showed perfusion-poor perfusion-but perfusion none the less. This means that blood is flowing into the transplanted kidney, but it is questionable how well the blood is circulating throughout the kidney. The scan also indicated a slight improvement in kidney function compared to the scan that was completed after the surgery. Although the scan showed improvement, it did not indicate a substantial amount of improvement. In other words, the kidney is a little better than it was initially, but is still not working as well as the Transplant Team had hoped.

2. Mark's creatinine level has not decreased since our last blog. It has stayed essentially the same over the past three days. This is "neutral" news in the sense that we had wanted to see a continual decrease of creatinine, but we are glad that the creatinine isn't increasing. A continued decrease of creatinine would indicate better kidney function and would mean that the treatments were successful in combating the rejection. A significant increase would be a bad thing as it would indicate that the kidney function was worsening.

3. Mark is continuing to receive plasmapheresis and anti-rejection medications (IVIG, thymoglobin). Plasmapheresis is a treatment in which the plasma or watery part of Mark's blood is extracted and replaced with a cleansed protein which is then mixed back in Mark's blood and pumped back into his body. As I understand it, the thought process behind this treatment is that the type of rejection that Mark's body is demonstrating involves antibodies; antibodies are carried in the plasma of blood; extracting the plasma through plasmapheresis would remove the antibodies that are triggering the rejection of the graft (transplanted kidney). Plasmapheresis reminds you of dialysis in the sense that it requires a special machine that literally pumps out the patients blood, cleanses it, and then pumps it back in the patient's body. Mark is receiving plasmapheresis every other day. On the days when he doesn't receive plasmapheresis, he is taking strong anti-rejection medications. One of which is IVIG. IVIG kind of has the opposite effect of plasmapheresis as its purpose is to neutralize the antibodies that Mark's blood is carrying. So, plasmapheresis cannot be completed on the same day that Mark takes IVIG because it would remove the IVIG from his bloodstream. The combination of IVIG and plasmaphereis is common practice for treating humoral rejection. However, as noted in a previous blog, Mark has hyperacute humoral rejection. It happened very quickly. Usually, humoral rejection happens later. So, it is questionable whether or not this will work.

4. Justin is at home and doing well. He has been calling to check on Mark each day. He drove his car today-so he must be feeling well!

5. At this point, we are playing a waiting game. No one really knows what to expect. It is a matter of waiting to see if the treatments will be successful in saving the transplanted kidney. All we know right now is that the treatments will continue throughout the weekend. The Transplant Team will make a decision on Sunday or Monday about whether or not to continue the treatments or to discharge Mark.

We are continuing to pray for a miracle. At this point, it seems that it would truly be a miracle if the transplanted kidney started working as it should. We know that God is completely capable of making our dream of a successful transplant a reality. We just don't know if it is His will to do so. Please pray for us as we will need His strength to accept any outcome.

Team reports slight improvement as Baby Kate arrives!!!

2009-06-08T15:30:00.010-04:00

This morning we learned that Mark's creatinine has decreased! Although this is considered to be a slight improvevement, we are happy to hear some good news. We are trying to not get too excited about this news as the transplant team has warned us to stay "cautiously hopeful." Creatinine is a chemical found in the blood that is used to predict kidney function. Mark's creatinine was around 5.0 when we arrived for surgery last week. It dropped to around 4.9 and 4.7 this weekend. Typically, successful transplants cause creatinine levels to drop significantly (several points). So, the decrease of .1 to .3 was not a good sign. This morning, we found out that Mark's creatinine is now at 3.9. Although this isn't as much of a decrease as the Transplant Team would like, it is at least a step in the right direction. This means that the treatments and medications may be helping to combat the rejection. The transplant team is planning on having Mark complete at least 5 more plasmapheresis treatments. They are anticipating that he will be hospitalized until at least Saturday. However, they are completing a new scan of the transplanted kidney in the morning. We are praying that the scan will continue to show good blood flow. If there is good blood flow, we still have hope for saving the kidney.

In the midst of all of this, Courtney and Greg's baby girl decided to bless us with her arrival! Kate Mallory Drury was born at 3:13 this morning. She weighed 8 lbs and 5 oz and is 20.5 inches in length. Kate is absolutely beautiful! She has a head full of black hair and has Courtney's full lips! Sorry Greg-Baby Kate looks like her Mommy!!! I was so happy to be there for Kate's delivery. Courtney and Greg were on their way home from Lexington when Courtney started having some contractions. Although Courtney objected, Greg made her go to the hospital in Corbin since they were driving through. It is a good thing he did, because she was in labor! Mom, Dad, Josh, Aunt Sheila, and I headed down to Corbin soon after. Courtney ended up having a cesarean section due to fluctuations in Kate's heart rate. When I left Corbin this morning, Courtney was very fatigued and in some discomfort. So, please add her to your prayers as well.

A Request for Continued Prayer

2009-06-05T19:32:00.009-04:00

We're getting ready to go down for a treatment. Here is an update about what has happened over the past 24 hours:

1. The ultrasound of the transplanted kidney that they completed last night after the surgery was not favorable. The Surgeon completed a second surgery around 1:00 am. He reopened the incisions to double check that the kidney was "hooked in" correctly. Everything appeared to be connected correctly, but blood flow was still a problem.

2. Mark spent the night in ICU. They monitored his urine and blood throughout the night. His urine output is good. Analysis showed his creatinine has dropped-but not as much as expected for a successful transplant.

3. They sent Mark to nuclear medicine for a scan using a contrast this morning. We just received the results about an hour ago. The results show that the kidney is perfused. In other words, blood is flowing into the main arteries of the transplanted kidney. However, they are unsure how well blood is circulating to the smaller arteries. Please remember that this is slightly more positive than the last transplant. In March, each scan they did of the kidney showed no perfusion.

4. They did another biopsy of the transplanted kidney this afternoon. Results are indicating that this may be a case of humoral/antibody mediated rejection. From what I can tell from talking to the Transplant team, there are different types of rejection. Antibody mediated rejection is very difficult to predict and is also difficult to treat. The antibodies that signal an immune response are involved with this type of rejection. The anti rejection medications commonly used after transplants don't always help. What seems to be even more confusing to the Transplant Team is that antibody mediated rejection usually doesn't occur so quickly after transplantation. There are medications that have helped other patients, but the "time frame" was different. These patients appeared to have a successful transplant initially and then later had difficulty. Mark is starting out with difficulty. The Transplant Team is giving Mark the medications that have worked in the past, but they are unsure if it will be effective.

5. The Nephrologist just placed another central line Mark's his neck. We are waiting to go down for a type of treatment that cleanses the antibodies from Mark's blood.

In summary, the prognosis isn't exactly favorable. The Team isn't that hopeful that this will work. However, we have more hope than we did last time. PLEASE CONTINUE TO PRAY!!!!!!!!!!!!!!! They are giving us a window of one to two days to determine if this will work.

Please remember to lift up Justin and his family. His mom reports that he is nauseous and hasn't felt like eating. He is spending most of his time sleeping.

Surgery is complete

2009-06-04T21:34:00.003-04:00

All seems to have gone well with the removal of Justin's kidney. He has been recovering in his room now for several hours. His family reports that his pain is pretty well controlled. He has had several visitors and appears to be doing well.

Mark's surgery lasted longer than we had anticipated. We got to see him about 5 minutes ago. The Surgeon is hopeful that all went well. After Justin's kidney was placed in Mark's body, there appeared to be difficulty finding a position for the new kidney to allow for optimal blood flow. The Surgeon remains hopeful. However, time will tell. They are keeping Mark in ICU tonight so that they can continually monitor his blood and urine output. They completed an ultrasound of the transplanted kidney and we are awaiting the results now. Please pray that the blood is flowing as it should through the new kidney as this will determine if the transplant will be successful.

Surgery Update: Justin is in the Prep Room/Mark is waiting for blood work results

2009-06-04T10:54:00.006-04:00

We are asking that everyone lift Justin and his family up in prayer as we just learned he is in the prep room. I am praying that God will give them peace and that He will wrap his loving arms around each of them. Although I can empathize with Justin, I cannot imagine how Rhonda and Jack must feel knowing that their son is getting ready for surgery. We've spoken to Justin and Rhonda on the phone a few times this morning. They never fail to amaze us and Justin seems to remain calm and eager for the surgery despite the stress of the situation.

We have spoken to several of Mark's doctors this morning (Nephrology, Hematology, General Surgeon, Anesthesiology, Transplant Surgeon). We spoke with Dr. Gedaly-the Transplant Surgeon-around 8:00 this morning. Dr. Gedaly did not perform the transplant in March. However, we know Dr. Gedaly as he was the Surgeon we met when we initially visited the Transplant Clinic. We feel really comfortable with Dr. Gedaly. He explained his plans for the surgery and basically said that he wanted to err on the side of caution throughout the entire surgery. Thus, he ordered a consult with Hematology. The Hematologist who came this morning was the same doctor who saw me for my follow up appointment a few weeks ago. So, he was familiar with our case. He said that the Transplant Team had done a pretty complete work up on Mark's blood work after the transplant in March. All of the results of the testing indicated that Mark does not have a blood clotting disorder. He did order 2 additional tests to add to the information. The team came and took a blood sample from Mark about 20 minutes ago. We are presently waiting for the results of this test. If all results are favorable, the surgery should be completed around 1:30.

I will try my best to update as much as possible. Thanks so much for all of your prayers. Please continue to pray for Mark!!!

Checked in and waiting

2009-06-03T19:51:00.006-04:00

After a long day, we are finally checked in room 840. We have spoken with several of Mark's doctors and actually feel a little better about the surgery than we did a few days ago. Tomorrow morning, Mark is being seen by a Hematologist who is going to double check the results of Mark's blood work to make sure that he doesn't have an issue with blood clotting. Unlike the last surgery, we have been assured that we will get to speak with the Transplant Surgeon before the surgery begins. We have a few questions we would like to ask. We are praying that we will have a peaceful feeling after speaking with the Surgeon. Please continue to pray for Mark, Justin, and the White Family. I am sure that Justin is starting to feel a little anxious at this point!

One week away from Transplant #2!!!

2009-05-27T18:56:00.006-04:00

Mark's second transplant has been tentatively scheduled for June 4th!!! It is hard to believe that a week from tomorrow we will be back at UK for another transplant! We went to the Transplant Clinic today for the final crossmatch between Mark and Justin's blood. Justin met with Dr. Strup-the Urologist who will be removing his kidney. Hopefully, we will find out the results of the final crossmatch by the end of the week. If the crossmatch is "negative," we should receive our official orders from the OR.

I apologize for not updating the blog as frequently as I did for the first transplant. Justin has visited the Transplant Clinic several times for testing involved in the living donor evaluation process. We've tried to avoid doing anything that would make Justin feel pressured to make this decision. Thus, we didn't ask for specific information that may make him feel uncomfortable or give him the feeling that we don't respect his privacy. In addition, to be very honest, Mark and I are both pretty stressed right now. We've tried to avoid thinking about the transplant as much as possible in an effort to minimize stress and anxiety. This is an impossible task of course, but cutting back on the blogs at least helped somewhat.

As many of you know, the transplant was originally supposed to occur in late June or early July. However, one of the surgeons was unavailable during the last week of June. Thus, we were moved to June 4th. This is actually a huge blessing. When Mark and I visited his Nephrologist last Monday, he told us that Mark was a "heartbeat away from dialysis." He told us that if the transplant was any later than June 4th, Mark would need to go on dialysis.

Please continue praying for our family. We will need your prayers now more than ever. I think we all are more anxious and worried about this transplant than we ever were back in March.

Starting the process for Transplant #2

2009-04-19T22:35:00.007-04:00

As many of you are aware, the Transplant Team is starting the process for another transplant. Several weeks ago, Mark and I visited the Transplant Team for his follow-up appointment. We spent a great deal of time talking with the Surgeon regarding what went wrong during the first transplant and what the team will do differently if another transplant is conducted. Many of our family and friends have asked the same types of questions about our situation and follow-up visit with the Transplant Team. So, in an effort to make this information easier to read, I've listed the information in a question and answer format. Enjoy!

What happened to my kidney after it was removed from Mark's body?
It was sent to pathology for testing. The testing was completed to determine why the transplant failed.

What were the results of the testing? Did the testing indicate what happened?
Results from pathology regarding my kidney were somewhat inconclusive in the sense that they could not conclude if the failed transplant was a true case of rejection or if some other factor caused the transplant to be unsuccessful. A great deal of the blood vessels in the kidney appeared clotted. The physicians don't know if the clotting issue occurred as a result of 1. Mark's body clotting in response to my kidney; 2. Mark having some rare genetic type of clotting disorder (he has family history of this); 3. My kidney might have had a clot that was unable to be detected during the evaluation process or removed during the part of the transplant where they "cleanse" the kidney after removing it from the donor; or 4. a combination of these factors.

What will the Transplant Team do differently during the next transplant?
Regardless of what caused the clotting issue, the Transplant Team is going to use anti coagulation medication (i.e. "blood thinners") before and after the transplant. This is very risky though-I don't think any doctor would choose for a patient to be on blood thinners during a major surgery.

Why didn't the physicians use anti coagulation medication during the first transplant?
The risk involved with the blood thinning medication is the reason why it wasn't used during the first transplant. The team had no reason to believe an issue with clotting existed. Now that they know about the clotting issue, I guess they are willing to accept the risk.

Is Mark on the "waiting list" for a kidney from a cadaver?
Yes, Mark has been placed on the universal network for organ sharing list. As I mentioned in a post from several months ago, we were under the impression that he was already on the list. Apparently, when I was completing the testing to become the donor, Mark was not on the waiting list. However, we received an official letter a few weeks ago stating he was on the list. Hypothetically, we could get a phone call at any time telling us that Mark has been selected as the recipient from the waiting list. However, the average wait time on the list is around 15 months. We are praying for another transplant sometime soon-before Mark is in need of dialysis.

Who is the next potential living donor?
If you recall, Mark has had about 14 people call the Transplant Clinic and offer to become his donor. Back in December, the top three donors completed the blood crossmatch test. All three (Mark's Aunt Carma, Justin White, and me) passed the test. When the transplant with my kidney was deemed unsuccessful, the Transplant Team wanted to explore completing another living donor transplant. When Mark was still hospitalized from the first transplant, Justin, the son of one of Mark's coworkers, called and came to visit him at UK to let him know he was still willing to give his kidney. So, the living donor evaluation process has started with Justin. As I've noted in previous posts, Justin's willingness to help Mark is truly amazing. It honestly blows my mind. Justin is a Freshman in college. How many 18 year olds are willing to become a living kidney donor-especially to someone who is not considered a "close friend or family member"? Mark and I have both told Justin that he can change his mind at any time and we would not blame him or be upset. We would never want him to feel pressured to make this decision. Each time we speak with Justin, he seems determined to help. He told me not long ago that he "really wanted to do this." Just thinking about Justin's willingness to help brings me to tears. The Lord truly does work in mysterious ways. Even if something happens where it is not in God's plan for Justin to become Mark's donor, I can honestly say that we have already been blessed by knowing Justin.

When will the next transplant take place?
The transplant is tentatively scheduled for the last Wednesday in June or first Wednesday in July. Please understand that this is only an approximation. The Transplant Team feels it is best if Mark's body has time to rid itself of the anti-rejection medication that was used during the first transplant as this type of medication weakens the immune system and may make another surgery difficult.

What will happen between now and the next transplant?
Mark is being followed by the Nephrology practice that has cared for him since he was first diagnosed with IGA. These physicians will monitor his kidney function and determine if and when he will need dialysis. Justin will continue with the living donor evaluation process. A second crossmatch test with Justin and Mark's blood has been scheduled for May 7th. I will see a Hematologist at UK on May 6th who will do some analysis of my blood to make sure I don't have a blood clotting disorder.

Our Hope Endures

2009-03-24T23:43:00.000-04:00

As most of you already know, our transplant was unsuccessful. This was the second time in the history of the transplant program at UK that a renal transplant simply didn't work. Although results of testing are not complete at present, it appears that there were unforeseen and unexplainable issues with blood flow and clotting. So, it wasn't that Mark's body rejected my kidney or that a mistake was made in the process of transplantation. The kidney never started functioning appropriately and as a result was removed from Mark's body within five days of being transplanted.

I cannot begin to express all of the pain (physically and emotionally) that our family has experienced. I went from believing that my husband's health would be restored to seeing him on a ventilator to watching him being wheeled back into surgery to have my "gift of life" removed all in a matter of days. Although words can't express what has happened, I can tell you that we have not given up. We're not giving up on another transplant, on a healthy outcome for Mark, on a successful ending, and most importantly...we're not giving up on our Faith. Although it has taken me quite a while to reach this point, I believe that something good will result from this situation even if we never know what it may be. I remain grounded in my Faith and firmly believe that God had a purpose in mind for why things have happened the way they have. This has been the most difficult time in our lives, but our Hope endures.

Mark and I would like to thank all of you for the thoughts, prayers, cards, gifts, food, and other acts of love that have been showered upon our family. We feel blessed to have such a thoughtful church family and community. We have undoubtedly relied upon prayers and God's strength during these difficult days. We've also found encouragement in the following songs of praise: Mercy Me's "Bring the Rain" http://www.youtube.com/watch?v=e8HgAVenbUU and Natalie Grant's "Our Hope Endures" http://www.youtube.com/watch?v=xg6b5T7I6VE . We will post more information relative to results of testing and plans for the future as we learn more from the transplant team.

Request for Continued Prayer

2009-03-06T19:47:00.004-05:00

Kellie has requested that I update the blog on her behalf and ask for your continued prayer. Initially, the outcome of the surgery seemed successful. Although Kellie and Mark were in a great deal of pain following the surgery, Mark's body was producing urine through Kellie's kidney, his hypertension was decreased without medicine, and he reported feeling much better. He even walked down to Kellie's room for a snuggle this morning. However, during a routine scan of the donated kidney function, results indicated an abnormality with blood flow in the new kidney. Thus he had to go back into surgery to allow the surgeons to view the transplanted kidney to determine the status of the kidney. The kidney appears healthy, but there continues to be concern with blood flow. He is presently in the recovery room. We are asking now more than ever for your prayer as we are fearful his body will reject Kellie's kidney.

Tish

And we're off!!!

2009-03-05T08:38:00.003-05:00

It has been a somewhat rough start (i.e. no room available when we arrived, confusion on the time of surgery, confusion in whether or not Mark should be a participant in a research study of a new anti-rejection medication, etc). But, in a few hours this will all be behind us! I will report to the OR at 11:45. Mark will then go back about 45 minutes later. The surgery will officially take place around 1:15. The surgery will last several hours-we think up to 4 hours. At the present, Mark is in Room Number 837. We think he will stay in this room after the surgery. We don't know my room number, but will post it as soon as we know. We are both pretty nervous right now and anxious for the entire ordeal to be over. Please continue to lift us up in prayer as we are relying on the Lord to help us through this difficult time!

Orders from OR received!

2009-03-02T23:31:00.003-05:00

Well I am not exactly excited about Harlan County Schools having yet another snow day today, but being home did allow me to receive all of the phone calls from UK today and to spend some extra time with Mark Thomas! We are scheduled to be at the hospital on Wednesday at 12:00. Mark will be admitted so that the Transplant Team can do some final testing to make sure all of his levels (i.e. potassium, blood pressure, etc.) are as low as possible. He may have to complete an EKG as well. I will not report to the hospital until Thursday morning. I have been given instructions of how to prepare for the big day. I can't eat at all on Wednesday and have to use a special kind of soap when showering on Wednesday and Thursday morning. If all goes well, I will be discharged on Saturday or Sunday. Mark will stay in the hospital for seven to ten days depending upon how his body responds to the new kidney. Much to my disappointment, the nurse from UK did not have the report about our final HLA crossmatch when she called this morning. However, she assured me that if we had received bad news (positive crossmatch), she would have already known and would have been calling frantically to let us know what had happened. I really wish I would have heard a definite answer, but I guess this will have to do for now! We will be leaving Harlan on Wednesday morning. We'll be checking our answering machine, but the best way to reach us after Tuesday night will be through our cell phone or email.

At this point, we are in "crunch" mode trying to pack all of our things and make arrangements for Mark Thomas. We have decided to take him with us on Wednesday. Initially, we were going to leave him with Rachel, our babysitter, and have my sister or brother spend nights/evenings with him until I was released from the hospital. Although this would have preserved his day time routine, his night time routine would be drastically different (he has only spent the night away from us on about five occasions and they were always with my mom or Mark's mom). Also, we are a little uneasy with him being so far away from us. So, Mark made the decision for him to come along. Of course, I didn't object. The difficult part now is planning who will take care of him and what they will do with him. At this point, my sister and brother-in-law will be caring for Mark Thomas on the day of the surgery. He is going to have a blast with them (they have plans to take him to Chuckie Cheese or Lexington Athletic Club's Kids Place)! After the surgery, my parents and Mark's parents will take turns caring for him. My brother and Mark's sister and her family will also be in Lexington until Sunday to help with Mark Thomas. I'm sure everyone will keep him occupied! I'm hesitant to let him visit the hospital-it is really germy and I'm afraid he may get upset when Mark and I can't leave with him. But, I can't promise that he won't make at least one trip to see his "DaDa" over the several days Mark will be recovering.

Please continue to pray for us and please forgive us if we haven't returned your call or email. It is a wonderful problem to have when so many people are calling that you can't return all the calls in a timely matter!

Final visit to Transplant Clinic before surgery

2009-02-28T22:55:00.002-05:00

Mark and I visited the Transplant Clinic this week for a final appointment before surgery. I completed a split-function renal scan, blood work, and met the Urologist who will be removing my kidney. The split-function renal scan, an exam in which a small amount of radioactive material is injected through an IV and watched as it travels through the body, was completed to give the Transplant Team insight into which of my kidneys has the best filtration rate. This information is used to determine which kidney will be donated to Mark. While at the clinic, we also completed our final "HLA crossmatch test." This is the blood test we completed back in December that entails mixing our blood to make sure that Mark's body does not respond adversely to my blood. A "positive HLA crossmatch" indicates that Mark's body formed antibodies in response to my blood. Forming antibodies is a signal of an immune response and can indicate his body may reject my kidney. If you remember, back in December, our blood testing indicated a "negative crossmatch." The Transplant Team repeats the crossmatch within 7 days of the transplant as a precaution. As I mentioned above, we also met the Urologist who will be completing my surgery. Although we had to wait over 3 hours to see him, Dr. Strup was well worth the wait. He had a great bedside manner and really took the time to educate us both on exactly what would happen. He showed us where my incisions would be made and gave me a choice of two sites for the incisions (a vertical incision starting at the naval and going down about 3 inches or a horizontal incision lower than the "belt line" that is about 5 to 6 inches in length). After all of this, I signed the consent form for donation.

We spoke with the Transplant Team yesterday. The results of the Split-function scan were complete. My left kidney will be the kidney donated to Mark. The results of the crossmatch test was not ready. We should hear back from the Nurse on Monday with the results and should also receive our orders from the OR. We will post more information as soon as we know all of the exact details.

While it is really unlikely for a donor to pass the HLA crossmatch initially and then fail it just before the transplant, I am still really nervous about the test. I am trying to remind myself to trust in God as I know He is continuing to watch over us. Please continue to pray for us!

Two weeks and counting!!!

2009-02-18T23:17:00.003-05:00

It is hard to believe that (if all goes well) our transplant will take place two weeks from tomorrow. As I reflect upon this entire situation, I continue to remain in awe of how God has worked in our lives. Looking back, I can see how He has guided us and provided for us in ways that we did not realize at the time. The way in which Mark discovered he had a kidney disease is a miracle in and of itself. The Lord was working on that day ten years ago when the nurse in charge of Mark's care during the removal of an ingrown toenail just happened to comment, "Your blood pressure sure is high." The Lord continued working as Mark mentioned the nurse's comment regarding his hypertension to the nurse at Dr. Weiler's clinic when delivering a package. This led to his visit with Dr. Weiler that resulted in a referral to a Nephrologist. And here we are today getting ready for the transplant and God hasn't stopped working! It still brings me to tears when I think of how God moved so many of you to offer your kidney to Mark. The nurse coordinator at UK mentioned to us several months ago that she had never received so many phone calls from individuals wishing to donate to a patient in such a short period of time. She had commented, "Mark must be a special person." Of course, I'll agree with her assertion! But I'd also add that our God is an amazing God who provides for His children. We have been able to lean on Him and trust in His plan for our lives. God knew what he was doing when he allowed me to meet an incredible woman who had given her kidney to her brother who has IGA Nephropathy about two years ago. I met this donor at UK, but not in the transplant clinic. She was actually the Radiologist Technician who conducted my CAT scan several weeks ago. God allowed our paths to cross and she provided me with a wealth of information. My conversation with her has made it even easier to stay calm and focus on the positives in the situation. In addition to these three things, God has done so much more! I may share others later. We have been blessed beyond measure. In my opinion, this entire situation serves as an undeniable testament to God's mercy, power, and love!

The transplant has been scheduled!!!!!!!!

2009-02-12T21:50:00.011-05:00

I am at my state association's conference and received the phone call that is the answer to months and months of prayer! Mark's transplant has been tentatively scheduled for March 5th!!!!!!!!! Please understand that this is pending the completion of the one remaining test of kidney function and approval from the Rheumatologist. As we've mentioned in prior posts, I am scheduled to see the Rheumatologist a week from tomorrow-on 2/20/2009. I will then see the Urologist and complete the final test on the Wednesday- 2/25/2009. If all goes well, the transplant will then occur the following Thursday-3/5/2009. While this is unbelievably wonderful news, please continue praying for us. While I am celebrating the news, Mark is starting to feel very anxious. He is fearful of rejection and his response to the medications used after transplantation, while also being worried about any pain or discomfort I may experience from donating. So...this post is a prayer request, but is mainly a huge "praise" report as we have continued to see God work in this situation!!!!

"I will praise you O Lord with all my heart. I will tell of all Your wonders. I will be glad and rejoice in You. I will sing praise to Your name O Most High."
Psalm 9:1-2

"I will lie down and sleep in peace for You alone O Lord make me dwell in safety."
Psalm 4:8

Persistence pays off!

2009-02-08T14:40:00.004-05:00

Well after all the confusion, I got an appointment with rheumatology last week! Apparently the weather caused some cancellations. Dad, Courtney, and I braved the weather and traveled to Lexington last Thursday. The Rheumatologist was incredibly nice and seemed very supportive of me donating my kidney to Mark. She stated that she could not really speculate about the accuracy of my diagnosis of skin-limited lupus from ten years ago. She mentioned several factors that would lead her to believe the diagnosis was inaccurate (e.g. no flare-ups since the original diagnosis; no flare-ups during pregnancy; no indications of lupus at present), but also mentioned several factors that would lead her to believe the diagnosis was accurate (e.g. I seemed to respond to the medication that is used to treat lupus when I took it ten years ago; the fact that I've been cautious when exposed to sunlight does not provide information about how my skin would react to the sun-an adverse reaction is an indication of skin-limited lupus). She said I had no clinical signs of lupus at present. She stated that the Transplant surgeon had really given her an impossible task in the sense that even if I had skin-limited lupus now, she can't predict whether or not I would ever develop systemic lupus. She also mentioned that having skin-limited lupus in the absence of systemic lupus does not rule out patients from becoming a living donor. She ordered additional blood work and an echo cardiogram (she thought she heard a heart murmur). Luckily, she was able to get me in at Gill Heart Institute the same day for the echo cardiogram. I have an appointment with her on 2/20/2009 to go over the results of the blood work and echo cardiogram. I would imagine at that point she will share her final decision with me regarding whether she will "clear" me for donating.

I titled the blog "persistence pays off" because in addition to the great news of completing the initial visit with the Rheumatologist, we received a notification in the mail today that my living donor nurse coordinator had scheduled me with the Urologist for 2/25/2009. This was the appointment we had heard was very hard to secure. So, we are thrilled that we have an appointment with this physician! It is starting to feel that things are once again moving in the right direction!

We are continuing to ask for prayer from everyone. Mark has been really fatigued the past few weeks. He actually missed work today due to fatigue and pain which is really rare. He has an appointment with his Nephrologist on Monday. We will post more information as we learn what lies ahead.

No new information...just frustration!!!

2009-02-04T10:05:00.009-05:00

Well...we've been waiting for over 3 weeks to find out when my appointment with Rheumatology will be scheduled. I have been emailing the living donor nurse coordinator very often to find out what has been going on with my appointment. UK was closed several days last week due to the ice/snow storm. Yesterday, I decided to call the Rheumatology department at UK in hopes of getting some information about the status of my appointment. What resulted from my phone call was a lot of confusion! The office worker in Rheumatology informed me that I was not in their database as an active referral. As you might imagine, I became very frustrated with the entire situation! My correspondence through email with the nurse had led me to believe that there would soon be a resolution to this matter. Thus, I left the nurse a message asking her to call and clear up the confusion. I also informed her that we were getting frustrated with the situation. It is very difficult to watch your husband's health decline as he becomes more and more fatigued and at the same time think that the transplant clinic is not doing their part in moving the process forward. Mark was also very frustrated with the situation and called the nurse in charge of coordinating his care. He actually left her a message the day before, but she had not returned his call. Mark also informed her of his feelings and told her that we were considering visiting another transplant clinic due to the lack of communication. Within an hour, my nurse coordinator called and let me know that I was entered in the database as "Coldiron-Ellis." She believed that if the Rheumatology office had searched for my name as "Coldiron-Ellis," they would have seen me listed as an active referral. She also assured me that I would hear from Rheumatology by the end of the week when my appointment had been scheduled. The nurse was a little defensive and her tone was not exactly understanding throughout the conversation. As most of you know, I am a "peacemaker." I don't like confrontation or thinking that I've upset someone else. But, at the same time, I refuse to apologize for being concerned about Mark and wanting this entire process to move forward. Everything we've read advocates for early transplantation. As we've stated in previous posts, transplantation before dialysis and from a living donor leads to better outcomes for the patient. So, although this may not be deemed an "emergency situation" by all members of the medical community, it is an emergency in our eyes and any delay is especially troublesome. So, once again, we are asking for prayer: prayer for patience, prayer that we'll hear something soon, prayer that this entire ordeal will come to a happy resolution quickly!

On a more positive note, Mark was officially listed on the Universal Donor List yesterday. This is the one positive thing that resulted from all of our calls. So, hypothetically, at any time, we could get a call that he has been chosen to receive a kidney from a cadeveric donor. The average wait time once placed on the list is 12 to 15 months. Thus, it is not likely that we'll get the phone call before the process involving me donating my kidney is complete, but you never know!!! I am not convinced that I would necessarily want Mark to receive a kidney from a cadaver, but I have to trust that would be God's plan if we got the phone call before the transplant with my kidney is scheduled. As you can see from the picture, Mark Thomas has been enjoying all of the snow days in Harlan. The frustration of yesterday made me especially thankful that he is too young to realize exactly what is happening. He is amazed by the snow and really liked making what I believe is the cutest snowman of all time in our yard!

The surgeon requests one more test!

2009-01-13T23:12:00.006-05:00

Yesterday I was back at UK for more testing at the Transplant Clinic. I did lab work, met with the Transplant Surgeon, and completed a CT scan. The Surgeon informed me that in most cases the CT scan is the final test needed to make sure that an individual can donate an organ. However, the Surgeon is recommending that I visit a Rheumatologist to double check my organ functioning due to my medical history. About 8 years ago, I was diagnosed with skin-limited lupus. Skin-limited lupus is basically lupus only of the skin. It is not the same as systemic lupus which can lead to organ failure. If I only have skin-limited lupus, I can proceed with giving my kidney to Mark. However, if for some reason, I have developed systemic lupus, I will be ruled out as a donor. The chance of me having systemic lupus is really unlikely. A very small percentage of people with skin-limited lupus develop systemic lupus. In addition, the surgeon assured me that all of the testing that has been completed thus far has shown that my organs are really quite healthy. He does not think I have systemic lupus, but wants to double check as a precautionary measure. He actually questioned my diagnosis of skin-limited lupus. It was interesting that he questioned the diagnosis because I've often wondered if I was accurately diagnosed. I have not sought medical care for my skin for several years and haven't needed any medication. I essentially only had one skin "flare-up" which occurred when I was an undergraduate and in a stressful time in my life (I was applying for graduate school and serving as President of my sorority). My curiosity about the diagnosis was especially heightened when my skin did not "flare-up" at all during my pregnancy which usually happens to patients with skin-limited lupus. My OB-GYN did lab work at the beginning of my pregnancy as a baseline of my organ function in case any problems arose during the 9 months. The lab work was normal and luckily there was no need to repeat the lab work or monitor my organ function throughout my pregnancy. I understand the Transplant Surgeon's decision to refer me to a Rheumatologist, but I'll be honest that I am a little disappointed. I am fearful it will take several weeks to get an appointment with a Rheumatologist and really wanted to hear the Surgeon say, "Yes, you have been selected as the donor!" Oh well-I guess we'll just have to be patient!

Thanks for all the prayers yesterday. The CT scan yesterday was really interesting. A "contrast" dye was injected into my arm through an IV. This allowed the CT scan to trace the blood flow through my body. This gives the surgeon information about where to sever the renal artery and connecting arteries/veins during the transplant. It was an awkward feeling to say the least!

Testing, Testing, and More Testing

2009-01-08T17:44:00.003-05:00

Great news-I passed the testing conducted on January 2nd (lab tests, Chest X-ray, EKG, and renal ultrasound)! So, the testing will continue as hoped. I am scheduled to complete more lab work, see the Transplant Surgeon, and complete a CT scan on Monday, January 12th. Once again, I am hesitant to get too excited, but am really glad that things are moving along. We are thankful for this good news and will update as soon as we learn more!

Appointment Scheduled for January 2nd

2008-12-29T23:22:00.005-05:00

Mark and I hope that everyone enjoyed a wonderful Christmas holiday. We were blessed with a happy, but busy holiday season which has impacted my ability to set aside time to post updates with respect to the transplant! I am scheduled to visit the Transplant Team at UK on Friday-January 2nd. I will complete (and hopefully pass) 3 tests: EKG, ultrasound, and X-ray. It is my understanding that if I am successful in passing these tests, I will have to visit the Transplant Clinic at least 3 more times for additional testing before I am deemed "the donor" and the transplant is scheduled. So, needless to say, we are trying to be patient and positive! I am fearful of getting my hopes up about being the donor and then finding out that I am ruled out. It is sometimes frustrating to think that even after Friday we still won't know for sure if I am selected as the donor. But, when I reflect upon how smoothly things have gone thus far, I can't help but be thankful for how God has worked in our lives. We have read about other transplant patients who have waited years to get to the point where we are now. We keep reminding each other that God is in control of this situation and will guide the Transplant Team to His choice for the donor. I really can't express how badly I want to be selected as the donor, but ultimately I want God's will to be done (even if it doesn't match my personal thoughts of what would be best for my family). As always, thanks to everyone for your thoughts and prayers. I understand it is difficult to know what to say in times like this, but please know that your words of encouragement are greatly appreciated and mean so much to us.

Testing is scheduled to continue

2008-12-16T08:07:00.002-05:00

Mark and I spoke with the Living Donor Nurse Coordinator yesterday and she agrees with our decision that I should proceed with testing!!!!!! I was so relieved to hear her say that she thought I'd be a good candidate to continue with the testing. She is a little "hard to read" at times. I was fearful that she would disagree with our decision.

I had hoped to complete the testing sometime over my Christmas break. While she said it would be nearly impossible to schedule the testing for next week, she thought January 2nd was a possibility. So, we're keeping our fingers crossed that January 2nd will work out due to the fact that I won't have to use any of my remaining sick days to travel to Lexington on the 2nd. I'm not exactly sure what testing UK requires for potential donors. We've read that other clinics require an EKG, ultrasound of the abdomen, stress test, x-ray, 24 hour urinalysis, and additional blood work. Some clinics also require a renal angiogram (a test that involves use of a dye in the blood stream to examine the kidney). I'm just so excited about the prospect of donating that I'm really not concerned about the testing. I just hope that I can "pass" all of the tests. If not, I could be ruled out as a donor and another of the top three donors would then continue with the same testing.

As always, please continue praying for us. Thank you for the thoughtful emails, comments, and cards. We especially want to thank all of the people from Gardendale's First Baptist Church for their cards and emails. It means so much to us that Roy and Kelly have such thoughtful people in their lives.

An Early Christmas Gift: All Negative Crossmatches!

2008-12-12T20:12:00.004-05:00

Today we received wonderful news from the transplant team! All three potential donors were "negative crossmatches!" In other words, the results of the blood work completed on Monday indicated that Justin, Carma, or I could serve as a donor for Mark. At this point, only one donor will proceed with the additional testing that is required to determine if he or she is healthy enough to donate. The transplant team has asked Mark and I to think about who we think should donate and respond to them with our choice on Monday. At that point, they go over the results of the testing and our input to decide who they think should continue with the testing.

It is an easy decision for me...I really think that I should be the donor! I am actually really excited about the prospect of giving my husband a kidney. I have spent a great deal of time thinking and praying about the situation and honestly have a very peaceful and good feeling. I have felt like I would be the donor for several weeks. I don't have any reservations at all about donating. Mark and I are blessed with a wonderful family who could help us during recovery and could help with caring for Mark Thomas.

While I can't express my gratitude to Carma and Justin for their willingness to help, I do not want to involve either one of them in the process if I am able to donate. As a mother, I just can't consider putting another mother's son or another family's mother in jeopardy. Carma, Justin, and all of the other loved ones who have offered to donate have taught us an unbelievable lesson about fearlessly trusting God and unselfishly giving to others.

We are continuing to pray for God's guidance and want to praise Him for this wonderful news!!!!!!! Hopefully, the transplant team will agree with our choice and I can complete the additional testing over the holiday break.

Testing of Three Potential Donors is complete!

2008-12-08T22:25:00.004-05:00

Today we visited UK's transplant clinic for testing of top three potential candidates. Justin, Carma, and I completed lab work and met with the living donor nurse coordinator separately and as a group. The nurse was very kind. She informed us of the risks involved with donating. She also told us that we should know by the end of the week or beginning of next week if one or more of us is not ruled out and eligible to continue with the testing.

I had asked her if we would have any input into who was chosen as the donor if all three candidates were equally compatible with Mark's blood and tissue type. I may be thinking too far ahead, but I was happy to know that we will have some input into the decision making process.

We also found out that if one of us is selected as the donor, the surgery will probably occur in late January or early February. I guess there is still a great deal of testing to be conducted with the donor and with Mark.

Although today's visit was not as lengthy and involved as past visits, it was emotional and an unique experience to say the least. We see Mark's Aunt Carma and her husband-Mike-quite often when they visit Harlan. But, seeing them walk into the clinic created a different feeling. Since I've known Mark, I've always admired Carma's loving and gentle spirit. She has a way of making you feel at home and comfortable. She did the same today.

I can't express how it felt to meet Justin. When he walked into the clinic, I almost cried. I can't imagine being 18 years old and willing to donate a kidney to someone I barely know. He is such an amazing young man. His compassion and kindness is both admirable and amazing. I am honestly in awe of his thoughtfulness for others. My prayer is that one day Mark Thomas will grow to be as compassionate and kind as Justin.

Please keep praying for us! We will find out soon if one of us can donate to Mark!

Words of Encouragement

2008-12-06T18:13:00.004-05:00

Mark and I have really been encouraged by several sermons, scripture, and songs we've heard recently. We are really enjoying our new pastor, Brandon Pugh. His recent sermons have really been applicable to our life. These messages-along with other scriptures-have served as a source of encouragement for us. Like I mentioned above, several songs have also helped lift our spirits in this difficult time. In fact, I told Mark last night that two songs in particular could be our "theme songs" for life right now. I wanted to pass the encouragement on to you:

Brandon's Sermon
Two weeks ago, Brandon was preaching on the reasons why Christians face trials and afflictions. His sermon came from Proverbs. I'm not too good at remembering every scripture that supported the message, but I do know the "take home message" or main point. Brandon used scripture to provide several reasons why Christians are afflicted. He mentioned that God often uses hardships to bring His children closer to Him. So, given that trials are used to draw you closer to God, Brandon challenged us to think about the affliction itself as an "act of love from God" or a gift. He challenged us to be thankful for the trial. So....we are now attempting to assume this attitude! We are trying (though not successful at every moment) to be thankful for Mark's kidney situation. We have talked about how there are several things to be thankful for related to his health (i.e. he has no other health problems that would jeopardize his candidacy for transplantation, we have good insurance and jobs, God has blessed us with a strong marriage, etc.) We remain firm in the belief that God's plan for our lives is a perfect and good plan.

Scripture
"For I know the plans I have for you," says the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
This has always been a favorite verse. Roy shared it with me when I was in his youth group. Mom reminded me of it several weeks ago. It continues to offer encouragement to our family.

Our Theme Songs
There is no way that I can verbalize the meaning of the two songs we've labeled as our "theme songs." So...here are the links videos on YouTube. Hope you enjoy!
"While I'm Waiting" by John Waller: http://www.youtube.com/watch?v=Bb7TSGptd3Y
"Praise You in the Storm" by Casting Crowns: http://www.youtube.com/watch?v=uHdcyue0bSw

Please pray for us on Monday as three potential donors are tested at UK!

A True Thanksgiving Blessing: Living Donors

2008-11-30T15:22:00.007-05:00

We hope everyone enjoyed a wonderful Thanksgiving!!! One of the blessings that Mark and I are especially thankful for this year is all of you who have offered to become Mark's living donor!!! The living donor nurse coordinator at UK commented that Mark must be a special person because they have never had so many phone calls from individuals wishing to donate to a patient in such a short period of time. So, once again, thanks to everyone who has expressed interest in donating.

About ten of our family members and friends have inquired about becoming Mark's living donor. Unfortunately, several of those individuals were ruled out due to having an incompatible blood type or health condition (i.e. high blood pressure, autoimmune disease, etc.) that makes donating too risky. I cannot express how fortunate Mark and I feel that so many of you were willing to literally give a part of yourself to Mark. Even though several of you were ruled out, we will always be grateful for your willingness to help.

We found out last week that three family members/friends who were deemed to be the "best potential candidates" are scheduled to go to the transplant clinic on December 8th for additional testing. The three candidates are me, Mark's Aunt Carma, and Justin White (the son of one of Mark's co-workers). As we understand it, three tests will be completed using a blood sample from each potential donor: blood typing, HLA crossmatching, and tissue typing. Blood typing will be completed to double check each potential donor's blood type. (Mark's blood type is A positive; Carma and I both have type A blood; Justin has O; So, this should work out okay). During the HLA crossmatch, each donor's blood will be mixed with Mark's blood to check for the presence of preformed antibodies. Antibodies are produced by the immune system to help the body fight infection and foreign substances. If antibodies are present, they can harm the donated kidney. Thus, a "positive crossmatch" prevents a transplant from the potential donor, while a "negative crossmatch" is a predictor of a successful transplant. Finally, tissue typing is completed using the white cells found in blood.

After the testing is completed, if one of the potential donors is found to be both blood type and HLA crossmatch compatible, the donor evaluation process continues (i.e. chest x-rays, EKG, psychosocial evaluation, Spiral CT, etc.). If Carma, Justin, or I are not compatible, additional family members that were deemed in the "top tier" of Mark's potential donors will go in for the three tests described above. We are unsure of how many people are in the top tier-we know my Mom is in the top tier. If none of Mark's potential donors are compatible, he will wait for a kidney from the deceased donor waiting list.

So...please join us in praying for God's continued Guidance, Peace, and a compatible donor!

Initial Visit with UK's Transplant Team

2008-11-06T20:20:00.003-05:00

Today Mark had his initial visit with the transplant team at the University of Kentucky Medical Center. It has been a long-but very informative and surprisingly optimistic-day. When patients are referred for transplantation by their nephrologist, the initial step is meeting with the transplant team (transplant surgeon, nurses, nurse coordinator, social worker, dietitian). The initial visit includes a great deal of testing (blood and urine analysis, X-ray of chest, ultrasound of abdomen, EKG, etc.) that is completed to determine if indeed a patient is a good candidate for transplantation. After candidacy is determined, the patient is then placed on the waiting list for a cadaveric donor and the search for a living donor begins. This is basically what happened to Mark today.

We were very impressed with the entire transplant team. We especially liked one of the surgeons, Dr. Roberto Gedaly. He had great bedside manner and seemed very down to earth. Dr. Gedaly even maintained his patience with me when I literally asked about 25 different questions! Mark also really liked the nurses who cared for him today. Today was "kidney day" so we had the opportunity to speak with two patients who had already received a transplant. They both had good things to say about UK. I think our overall impression about the transplant clinic at UK was very positive. When I asked Mark what he thought about the UK transplant clinic, he said, "I like it, I'm very pleased. I could go ahead and use this facility without going anywhere else." We have been praying that God would guide us in our pursuit of finding the transplant team that we should use. I felt very comfortable with the UK transplant team. At present, we are thinking that if we find a living donor, we may choose UK as the team. However, if we cannot find a living donor and need to use a kidney from a cadaver, we will definitely visit other clinics to allow us to be placed on the waiting list at several facilities. This is called "multiple listing." (I'll explain it in a later post).

Dr. Gedaly really emphasized the importance of finding a living donor if at all possible. He mentioned that the outcomes for patients receiving an organ from a living donor are much better than transplantation of an organ from a cadaver. He also stressed the importance of having the transplant as soon as possible. We are hoping to avoid Mark ever needing dialysis. As we mentioned in an earlier post, if Mark's kidney function worsens to a point of being dangerous before a donor is found or before we find one through the waiting list, he would have to go on dialysis. Transplantation outcomes for patients who have never had dialysis are also better than outcomes for patients who have had dialysis. So...our main focus now is finding a living donor!

In an effort to organize all the information and insight we gained today, I am going to post some of our questions to the transplant team and paraphrase their responses.

Do we have any choices other than transplantation?
The only other choice is dialysis. In other words, we have to do something to make Mark's kidney function better.

Would you recommend further testing to ensure Mark was accurately diagnosed or do you feel confident in his diagnosis?
Mark was diagnosed through a kidney biopsy. Although it was several years ago, doing another biopsy or testing is unnecessary. Completing another biopsy would place his kidneys at risk. All of Mark's blood work and urine analysis indicate that his kidneys are failing. This serves as evidence that his diagnosis is accurate. The focus at this point isn't why his kidneys are failing-it is what can we do about to make it better.

Is there a maximum number of transplants that patients receive in a lifetime? If so, is there any advantage to waiting before transplantation (especially considering that Mark feels well and more and more research is being conducted each year on how to improve kidney functioning)?
We have done up to 3 for one patient. There isn't a "set" number of transplants. However, it is important to understand that the likelihood for rejection would be greater for the patient with each transplant. Waiting would not be the best situation for a number of reasons. Right now, Mark only has one major health problem. The longer we wait the more time he has to develop other issues which may compromise his candidacy for transplantation and may make the transplant more difficult. In addition, waiting could mean he may need dialysis which can also make transplantation more difficult.

When will we know Mark's status for candidacy?
Our team meets each week, but I (Dr. Gedaly) can tell you that in my opinion he is a perfect candidate for transplantation. I don't see any problem recommending him for a transplant.

What is the average hospital stay after the transplant?
4 to 10 days for the patient, 2 to 3 days for the donor

What follow up care is required after being discharged?
Typically, patients visit the transplant clinic twice a week for 6 weeks, then 1 time a week for 6 weeks, then once a month, then they alternate seeing their nephrologist and transplant team, and if all goes well they end up seeing only the nephrologist

What is Mark's blood type?
A positive; this means that someone with A or O blood types could be a potential donor

I guess that is all for now. We learned so much today-it is difficult to post it all. I'll try to post more information about our visit, the transplant process, and living donors sometime soon. As always, Mark and I are thankful for your thoughts and prayers. It gives us great peace to know that so many of you are thinking of us.

Kellie

Encouragement from a praise song

2008-10-23T21:23:00.003-04:00

I was traveling back from UK last night listening to some "oldies but goodies" in praise music. Some of you may remember "Life, Love and Other Mysteries" by Point of Grace. The second verse and chorus of the song seem really applicable to our situation and offered some encouragement to me. I wanted to share it with you:

"When it seems that my heart is surrounded
and all of my questions of life have been sounded
I'll rest in the hope where my faith has been grounded
I will not fear the unknown.
You are Lord of life, love, and other mysteries
You know my future, you know my history
I find in You all I ever need to know
About life, and love, and other mysteries"

Mark's transplant is undoubtedly a mystery to us right now. It seems like we have so many unanswered questions-where to have the surgery, when it will take place, how to decide what physician is the best, etc. But, like the song expresses, it is so comforting to know that God knows both our past and our future. It is a blessing to be able to truly "rest in the hope where our faith has been grounded."

Report from the Patient Education Group

2008-10-20T23:41:00.002-04:00

Thanks so much for all of the positive responses we've received from everyone about the blog. But most importantly...thanks for the concern and prayers for Mark. We are adapting to the news slowly, but surely. We are holding tightly to God's promise that He will not place anything on us that we cannot handle without Him! We also believe that God's plan for us is a perfect plan (despite how we may feel at the moment)!

Last week, Rhonda, Larry, Mark, Mark Thomas and I attended a patient education group in Lexington. The focus of the group was mainly on dialysis, but we received a lot of additional information as well. We were able to speak with a Dietitian, Social Worker, and Nurse. We had received mixed opinions from our Nephrologists with respect to dialysis in the sense that some of the Nephrologists in the practice assured us that Mark would never need dialysis, while others have mentioned that he may have to have dialysis. After attending the education group, we can kind of understand these mixed signals a little better. The nurse informed us that the ideal situation is for Mark to receive his transplant before he ever needs dialysis. She also told us that while this is ideal, it isn't always possible. In other words, if we are still in the process of finding a living donor or a donor from a cadaver when Mark's kidney function gets to the point of being too harmful, Mark would have to go through dialysis. However, unlike many patients with end stage kidney disease, Mark's dialysis would be a temporary fix until he received the transplant.

The good news about dialysis is that there are two types that allow the patient a little more freedom in choosing which option works best with their lifestyle. One is known as "hemodialysis" and uses the blood, while the other known as "peritoneal" dialysis uses the peritoneal cavity. Although hemodialysis typically involves going to a dialysis clinic (usually 3 times per week, 4 hours per visit), peritoneal dialysis can be done at home while you are sleeping. This is the option Mark is considering the most. (I'll post more information about dialysis at a later time.)

Although our conversation with the Dietitian at the patient education group was brief, she did direct us to several useful websites and gave us a great cookbook that has really been a lifesaver! Mark's diet has been restricted in hopes of "lessening the load" on his kidneys. We are restricting sodium, phosphorus, potassium, protein, and cholesterol. Needless to say, it is quite a challenge to balance all of these restrictions. We've found that foods that are low in one area may be high in other areas. I guess it is a good thing that we live in Harlan where we are not tempted by lots of different choices in restaurants! I'll have to brag on Mark's dedication to his diet. He is being very mindful of what he is eating and has been exercising more regularly. He has already lost 9 pounds. He looks even more handsome than usual!

That's all for now...Thanks again for your thoughts and prayers. They mean more than you know! If you find any low sodium, low potassium, low phosphorus, low cholesterol recipes, please send them our way!

A little background info...

2008-10-11T14:11:00.008-04:00

Mark and I thought it may be helpful to give a little background information about Mark's health and some more specific information about his disease-IgA Nephropathy. Some of the information is a little discouraging-so the lighten the mood of the post-I am posting a picture of Mark Thomas!!!!

Diagnosed in 1998: We discovered Mark had IgA in an unusual way to say the least! At the time, Mark was working for UPS. He had a terrible ingrown toenail and had gone to a physician in Harlan to get it removed. Before the doctor began the procedure, the nurse who was checking his blood pressure happened to comment to Mark that his blood pressure was really high. She dismissed it as him being nervous about the removal of the toenail. The next week when Mark was delivering a package to a local doctor's office, he told the nurse about his blood pressure being high. She decided to check his blood pressure and was shocked to discover that it was still very high. She immediately scheduled him to see the doctor. This started the ball rolling and a couple of months later we were seeing our current Nephrologists who performed a kidney biopsy and diagnosed Mark with IgA.

1998 to 2008: As we mentioned in an earlier post, for the past ten years, Mark has been living pretty normally with IgA. In fact, people often find it hard to believe that Mark has a kidney disease! Mark appears very healthy and is very lucky in the sense that IgA hasn't caused any discomfort thus far.

We have been visiting his Nephrologists every 3 to 6 months (depending upon how well he is feeling) and an Endocrinologist every 12 months who have monitored his health. Because IgA is a progressive kidney disease, there is nothing that the doctors can do to reverse his condition. It is our understanding that they can control things like his blood pressure and diet to help preserve the kidney function that he possesses.

When Mark was first diagnosed with IgA, the doctors estimated that he possessed 41% kidney functioning. After ten years, our most current estimation is that he possesses 18% kidney functioning. Typically, when a patient reaches 15% kidney function, he or she receives a transplant. However, it is not an exact science. In other words, we can't assume that Mark will need a transplant the minute he reaches 15 % functioning. Our nephrologist mentioned that some people who have 18% kidney function are already on dialysis and some may have already received a transplant. The fact that Mark is tolerating the presence of his disease is really encouraging. To be honest, we don't really understand a lot of transplant process. Hopefully, we will learn more soon and will be able to post additional information.

IgA nephropathy: As we mentioned, IgA is a autoimmune kidney disease. It is also referred to as "Berger's disease" or "IgA nephritis." Basically, IgA causes protein to be deposited and trapped in the kidneys. This can lead to inflammation and scarring in the kidney. The cause of IgA is unknown and there is not a "cure" at present. A transplant is a treatment not a cure for IgA. In other words, even when Mark receives a new kidney, he will still have IgA and his body will continue depositing protein in the new kidney.

I am posting the links to two websites that have been helpful for us. As we learn more about IgA, I will definitely share it on the blog.

http://www.mayoclinic.com/health/iga-nephropathy/DS00856

http://www.igan.ca/id45.htm

Why Blog?

2008-10-08T10:20:00.001-04:00

As many of you know, Mark was diagnosed with IgA nephropathy, an auto-immune kidney disease, in 1998. For the past ten years, Mark's Nephrologists have been monitoring his kidney function and we have been doing our best to live life as usual. We have known all along that Mark would one day need a kidney transplant. However, it wasn't until yesterday at his 4 month check-up, that we faced the realization that his transplant would more than likely occur sometime soon (i.e. within a year). So, it seems that our journey to a kidney transplant has officially begun!

Several of you have already expressed interest in being kept informed of Mark's progress. So, we decided to create a web log for the purpose of keeping everyone "in the loop." We also hope that our blog may lead to us networking with other families who are going through similar experiences. As you check our blog for updates about Mark, please remember to also pray for our family. We will undoubtedly be reliant upon your prayers and God's guidance as we begin this journey!