Tuesday, November 29, 2011

Prayers Answered: Third Transplant scheduled!!!

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!

Sunday, November 13, 2011

Potential Match Identified...testing to follow

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!

Saturday, November 5, 2011

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

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!

Sunday, March 27, 2011

Report from Hematologist at Hopkins

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.

Tuesday, February 15, 2011

Appointment with Hematologist Scheduled

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.

Sunday, January 9, 2011

Update from Initial Visit at Hopkins

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.

Saturday, January 1, 2011

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

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!