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.

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!