Hi Colleen. For whatever reason, this website popped up on my feed this morning. I thought, "Why not?!" We actually came very close to listing at Mayo Jacksonville for my husband's liver transplant in 2012. To say that our journey has been a bit different from most would be an understatement. He went from diagnosed to critically ill in the ICU at Scripps Green LaJolla in the space of about 18 months. He went from a MELD of 19, to 30 in about two weeks. He then went to 39 and actually had to be deferred from the list for a bit until he was stabilized. He was so critical, they let me know we would not be coming home without a liver. Just about everything that could go wrong, DID go wrong. After 3 months in the ICU and six months in the hospital, he was finally released from Rehab. He was transplanted in April, we came home in August. Since then, I have been very involved with the Liver Transplant Caregiver support group at Scripps. While the experience was terrifying, it was also tremendously educational. We were surrounded by staff who were more than happy to help me understand what I needed to know. They actually refer to him as their "2012 Miracle". We were blindsided by nearly everything. Thankfully I have a background in Hospital Management and Systems. So I wasn't at all intimidated by jargon or equipment. What we expected was the "normal" experience: diagnosis, screening, listing, phone call, surgery, week in the hospital and recovery. The biggest surprise was Hepatic Encephalopathy. We only had one episode, but it landed him in ICU in restraints for 4 days until the ammonia cleared. It is the single bit of information that I have found to be woefully lacking in the process for patients who do not have liver cancer or PSC. We have had what is seems is the 'normal' course of events when it comes to skin cancers as a result of a predisposition and immunosuppresant medications. It's one of the things I constantly remind post-tx patients about. That's pretty much it.....

@justpatti Thank you for sharing your story about your husband's and your journey to transplant. I am happy for both of you for that he is doing well. I had PSC, so my knowledge is pretty much limited to that disease. I appreciate your additional information. I transplanted liver/kidney in 2009)
A support group for caregivers is wonderful resource. My husband would have liked a support group when we were in the process. (there is one now) With your prior hospital background with your own caregiving experience I know that you are a great resource for those who are caregivers.
@justpatti, It is good to meet you. I invite you to look at some of our other transplant discussions and I welcome you to share your story and experiences to support some of our other members.
Rosemary

Rosemary, we are so fortunate to have a transplant center that is very much pro-active with patients and caregivers. There is a monthly meeting for patients and caregivers (liver, kidney, pancreas). There is a speaker for the first hour with Q & A, then a break-out session, by specific organ. There is also a monthly meeting just for caregivers. It is one of those wonderful and bittersweet experiences. There are so many success stories, but of course, some sad stories as well. One of the most remarkable things about the caregiver group, is that two of the women who have lost their husbands, still come to the group occasionally. There is no such thing as "too much" support or too much information.