We decided that we would like to look into the option of Liver Transplant for our son Zachary. We wanted to make sure we had all the facts regarding this option. We called Children's Hospital of Pittsburgh and spoke with Lynn Seward, a nurse coordinator, who explained what would take place. I then had to do lots of work with our insurance company to get the approval for the evaluation. This process took me 5 months before I got an approval. I have an HMO and they deny, deny and deny with the hope that you will give up. One of the positive things that MSUD has taught me well is NEVER GIVE UP! Here is a day-by-day account of the process we went through.
8 a.m. -Register and get blood drawn - 12 tubes - By far the most traumatic part of the evaluation for Zac.
9 a.m. -Neurological Psychological evaluation. Children's Hospital of Pittsburgh is asking 10 people with MSUD to have this evaluation at the time of their liver transplant evaluation and then repeat the testing one-year after transplant. They want to have scientific data showing what the outcome has been.
The psychologist asked Ron and I background questions, then asked to meet with Zac alone. Zac stayed with her for about an hour. The information that was reported is what we expected.
11:30 a.m. -Meet with Lynette Rosser, the transplant social worker. Basically she wants to make sure you have a support system. She can find supports to help if there are concerns.
We then left the hospital and enjoyed the afternoon. I went back to the hospital in the evening to see Yasmeen Maisari, who had her transplant 10 days prior to this date.
9:20 a.m. -Ultrasound and chest x-ray - Zac could not eat for 6 hours before these tests. He did very well through both of these tests.
11:00 a.m. -Transplant clinic - We then met with Dr. Soltys (transplant surgeon), Lynn Seward (one of the nurse coordinators), and several other support personnel. They explained the transplant pros and cons. They answered our questions and invited us to send additional questions to their email if we thought of any later. Dr. Sindhi (transplant surgeon) then came in by himself and we went thru another question and answer. The staff was very informal and we felt comfortable asking questions. Dr. Squires also came and talked with us about our concerns with transplant. The entire staff was very open to questions. They gave us the sense that they could fix the problems that come after transplant.
1:00 p.m. -Cardiology - Zac had an EKG-Echo cardiogram and consultation. He watched a video thru this procedure and he did not mind it at all. Once again very nice people performed the procedure.
3:30 p.m. -We were able to leave the hospital and get something to eat. We then ran into Katy Martin, mother of Amy Martin (child with Crigler Najjar) who had a transplant 10 months ago. Her journey has been bumpy. She has had quite a few rejections requiring numerous hospitalizations.
9:00-11:00 a.m. -Meeting with Beverly Kosmach - Clinical Nurse Specialist. She explained all the potential issues we could have after transplant. She explained medicines, cautions and shared pictures of children at camp who have had transplants.
As we were waiting for the above meeting, Dr. Mazariegos (transplant surgeon) came and talked with us to see if we had any questions regarding transplant.
12:00 p.m. -Blood draw - 2 or 3 tubes
1:00 p.m. -Met with a person who explained anesthesia for the procedure.
1:30 p.m. -Met with Renee Jones-Hoots who explained the financial concerns regarding transplant. She also gave information about accommodations during transplant. We then went to see Yasmeen and Amy Martin once again to say our good-byes and to wish them a speedy recovery. Because of the great MSUD support groups we felt pretty well informed. We have decided to place Zac on the Liver Transplant list. At this point, we have gotten the call for Zac to be transplanted, but he had a cold so we will continue to wait and pray. I hope everyone supports us on our decision for what we feel is best for our family. We will continue to pray for all MSUD people and their families.
Please Note: Zac was transplanted on Monday, June 27th.
Liver Transplant Evaluation