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.


Jaime Penix said...

So glad you had a successful meeting with the Hopkins staff. You will continue to be in our prayers!


ps- I bet Mark Thomas loves the pic of Kellie by the dinosaur! :)

Anonymous said...

Oh, it was so good to find a post from you today........I have been looking for more news on a daily basis. I continue to pray for you and submit you and Mark for prayer at our church each Sunday. During the time of the sermon, there are always 2 or 3 members who volunteer to sequester themselves to pray for the prayer requests submitted that day.

The details that you have provided regarding the current situation allows each of us to pray for your SPECIFIC needs.......not just to pray in general terms. I remember, in the case of my brother, it always seemed that the specific prayers were the most beneficial.

I was happy to learn that you two had a pleasant visit around D.C. during your trip to Johns both needed and deserved that......a bit of normalcy and a temporary break from your situation.

You will never know how many times during a week (each day) that prayers are lifted for Mark and you. I dare say, you are in somebody's thoughts and prayers daily, if not many times a day.
God is touching others on your behalf. May that bring you comfort.

May you two continue to "let go and let Him".........

Anonymous said...

Still lifting you two in prayer and anxiously awaiting any update.
I currently am attending a Beth Moore study of Revelation at our church. As we studied chapters 4 & 5 Monday, we learned that the prayers of the saints are placed in golden bowls of incense that sit before the Throne of God and they are a sweet fragrance to God!
Just think, each time you two are lifted up in prayer, the prayers are sitting in front of God......He knows, HE cares and He will take care of both of you.