Sunday, April 15, 2012

Discharged 1 hour before Mark Thomas' party!

Mark was discharged yesterday with a PICC line in place in order to administer the remaining doses of steroids. He will have Home Health come and assist with changing the dressing on his line. He is scheduled to see the Transplant Team at UK tomorrow. Upon his discharge, his creatinine was back down to 1.2. We are thankful that all seems to be well with the kidney and are extremely thankful that Mark was discharged and returned home about an hour before Mark Thomas' birthday party! We are blessed with a wonderful family who all pitched in Friday night to take care of Mark Thomas and finish all the party preparation. Thanks to our family, Mark Thomas' party was a huge success! Thanks for all the thoughts and prayers!

Saturday, April 14, 2012

Admitted but hoping to be discharged soon!

Mark was admitted to UK yesterday due to an increase in creatinine. His creatinine baseline post transplant has fluctuated from 1.1 to 1.3. On Thursday, it was 1.5. UK is following Hopkins' protocol for treatment which includes 5 days of IV steroids. Yesterday, they placed a PICC line (IV access that can be used for an extended period of time) in Mark's forearm in hopes that he will not have to stay hospitalized for 5 days and can administer the steroid at home. They also gave Mark the first day of steroids. This morning, Mark's creatinine was back down to 1.2. We are thankful that the steroids appear to be combating any rejection. We are hopeful Mark may be discharged soon as Mark Thomas' 5th birthday party is planned for today at 2:00pm!

Friday, March 9, 2012

Back in the Bluegrass at last!

We are happy to report that we are back in Kentucky! After a final visit with the Transplant Team Wednesday morning, we left Baltimore and headed home to the Bluegrass! When we arrived at my parents' home on Wednesday night, we were greeted outside by my family. My sister had decorated the patio with blue and white balloons and a "Welcome to KY" sign. When Mark got out of the car, my family played the "Rocky" theme song. Mark, of course, had to assume the classic Rocky pose with his hands in the air. Mark Thomas, my nephew-Landon, and my nieces-Kate and Madelyn all began dancing. It was a wonderful moment!

Mark will continue to complete blood work two times weekly from Kentucky. We will fax all of his reports to Hopkins to allow them to closely monitor Mark's kidney function. Mark will also see Dr. Waid, the Nephrologist/Renal-Pancreas Transplant Director at UK, every other week. Dr. Waid, who initiated Mark's referral to Hopkins, will work in collaboration with Dr. Montgomery (Mark's physician at Hopkins). We will also be followed by a Cardiologist at UK who will monitor Mark's coumadin (blood thinner) use.

We will return to Baltimore this summer for Mark's 6 month check up at Hopkins. In addition, Mark will have a surgery to repair a surgical hernia. This is the same hernia he has had since his second transplant. We will stay in Baltimore for about 2 weeks. The usual post transplant protocol at Hopkins entails completion of a biopsy at 3, 6, 9, and 12 months after transplant. The biopsy is a way of ensuring there is no presence of rejection at the cellular level. However, the Team decided not to biopsy Mark's kidney as he is on the blood thinner.

We have requested information about Mark's donor several times. Mark's nurse coordinator feels confident that Mark's donor will release her information to us. We are eager to correspond with Mark's donor! Mom has been in in touch with her recipient, Ms. Smith. Mom sent her a card and they have spoken on the phone. Mom and Ms. Smith are hoping to exchange pictures of their families sometime soon.

The picture of Mark to the left was taken in the
Administrative Building at Hopkins (depicted in the photograph on the right). One of Mom's physicians told us that although Hopkins is not a faith based institution, the statue of Christ is cornerstone of the facility. It is often visited by patients and staff. Mark and I were eager to see the statue. We remain so incredibly thankful for what Our God has done for our family!

Wednesday, February 29, 2012

Today's Update

Mark's visit with the Transplant Follow Up Team went well today. His creatinine was 1.3. It has been fluctuating a bit...was 1.0, 1.2, 1.1, and now 1.3. All of the numbers are within normal limits. The Team says this fluctuation is common. Mark is scheduled to have the stent that was placed in the ureter of the new transplanted kidney removed on Monday. He will have a final visit with the Transplant Team on Wednesday and then we are heading home! We have enjoyed Baltimore and are beyond blessed with the outcome of the transplant, but are eager to return to Kentucky! Thanks for the continued prayers and support!

Monday, February 27, 2012

Home away from home

At last, here are some pictures of the town home we are renting in Baltimore. The town home is in a wonderful location in Baltimore...we would recommend it to anyone coming to the area. We have enjoyed staying in Baltimore, but are eager to return to Kentucky next week! We are keeping our fingers crossed that we can leave Baltimore next Tuesday! Mark is doing great. We will post information from our next appointment with the Transplant Team on Wednesday.

Wednesday, February 22, 2012

Transplant Clinic Appointment

Mark had a clinic appointment today with the Transplant Team. His blood work continues to show that everything is in normal limits. We are thrilled that the transplanted kidney appears to continue to be functioning well! Thanks for the continued prayers!

Monday, February 20, 2012

Out of the hospital!

Mark was discharged on Thursday afternoon! We are thrilled to be out of the hospital! Mark has been resting at the town home we are renting and is happy to be eating home cooked food! We go the the hospital 3 times a week to allow the transplant Team to continue monitoring the function of the kidney and the consistency of his blood as he is on a blood thinner. This morning, Mark's blood work indicated his creatinine has dropped back to 1.0! The adjustments in the medication appear to have resolved the rejection he was demonstrating last week. We will continue to post updates as we receive results of his blood work. We will remain in Baltimore until at least March 6th!

Monday, February 13, 2012

Signs of Improvement!!

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!

Sunday, February 12, 2012

Prayer Request

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!!!

Thursday, February 9, 2012

A Chain of Love

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!

Saturday, February 4, 2012

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

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!

Thursday, February 2, 2012

Mom and Mark are out of ICU!!!

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!

Wednesday, February 1, 2012

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

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!!!

Tuesday, January 31, 2012

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

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...

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.

Monday, January 30, 2012

"When my foot is slipping..."

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 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!

Thursday, January 26, 2012

Jars of Clay

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.

Wednesday, January 25, 2012

Familiar, Frightening, but not Forgotten

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!

Tuesday, January 24, 2012

Plasmapheresis Session #1 Complete/ Infusion #1 Underway

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.

Monday, January 23, 2012

Transplant Journey #3

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 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!