Hi,
My name is Cindy and my husband had a full whipple procedure and liver transplant done at the same time by Dr. Justin Nguygen, St. Lukes, Mayo Hospital, Jacksonville, Florida, September 23, 2004. What a miracle by the entire staff at both Rochester, Mayo and Jacksonville.
My husband was diagnosed with PSC about 4 years ago, two years he was diagnosed with bile duct cancer. He went through numerous stent placements, chemotherapy, radiation, brachytherapy and numerous blood transfusions at the Mayo Clinic in Rochester, Minnesota. In December 2003, I noticed that he was becoming jaundice. He became chilled and had a temperature of 103. I took him to a local ER hospital and they prescribed Cipro. Well, I knew that he had more than the flu, so the next day I took him to Mayo. That’s when Dr. Gores started the protocol of chemo and radiation for one month.
On February 14, 200, they did surgery to see if the cancer had spread, it had not. We were put on the transplant list. He also had PSC of the liver. We waited six months and finally after he had lost 60 pounds, Dr. Gores made mention that he would get a liver faster if he went to the Mayo Clinic in Jacksonville. We immediately made the necessary arrangements and were gone within the week.
When we got to Jacksonville, he had to redo all tests. His MELD score was 27, within three weeks we got the call. They never expected to have to do the whipple procedure, but once inside they had no choice. They removed 1/3 of his stomach, most of the small intestine and the head of the pancreas. He also received the biggest gift of life, a perfect liver. He was in the hospital for almost 6 weeks for infections and a few minor complications.
It has now been almost 4 months since the operation. Needless to say it’s a struggle. He doesn’t feel like eating and when he does he usually feels like vomiting and often does. He is not down to his lowest weight (6’2”, 139 lbs.). He started out at 220. We have been to every nutritionist, he’s on antidepressants, but I still can’t get him motivated. I signed him up for physical therapy, I got a stationary bike and he still has no energy. I know it will take time after such a huge operation, but how long do I wait? He seems to get worse instead of better.
Needless to say, I am completely frustrated. What can I do? Please help. Thanks for listening. The care he received at both Mayo hospitals was fantastic.