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.