@firstbess
Yes, I am happy to share.
I was diagnosed with Primary Sclerosing Cholangitis (PSC) and was monitored for aproximately 8 years before I was referred for a transplant consult at the Univ of KY transplant center. I was evaluated, placed on the UNOS transplant list in Nov. 2008. In Dec. I had stents as mentiioned in previous post. My symptoms were at extreme discomfort levels, and in Jan 2009, I was told by nurses that I would be called very soon for a transplant - but - a week later I was removed from the active list due to lab readings that indicated possible cancer in the bile ducts (Cholangiocarcinoma, a risk associated with PSC). Unsuccessful attempts to retrieve tissue samples for cancer made me inelligible for a transplant. so -
I was referred to Mayo Clinic in Rochester where they specialized in PSC. Unfortunately, my kidneys went into acute failuer (hepatorenal failure) and I was admitted to ICU in Kentucky until I could be stabilized and flown to Mayo.
I did not have cancer. I was evaluated and reactivated on the list for a liver and kidney in March 2009. I continued dialysis and was carefully monitored by both the liver and kidney team. I received my simultaneous Liver & Kidney transplant on Apr. 22, 2009.
When I awoke from surgery in the morning, I felt amazing. That afternoon I was rolled to my room a wheelchair while sipping on a vanilla milkshake! My recover was immediate and all pain was controlled. Nurses and doctors took care of anything medical, and taught me and husband everything that we needed to know before discharge. I had PT and was slowly walking around the nurses station for strength as I recovered. I could eat most normal foods, use the bathroom, and even get a shower on my own before discharge to outpatient care on day 7.
We remained in Rochester and had labs and frequent follow-up appointments until discharge from outpatient care on day30 post transplant.
Upon returning home, I continued having labs drawn locally, regained strength, followed the dietary recommendations that the transplant team had provided. I could take care on my personal care, and dress, but was slow doing it. Frequent naps and walking were my days adventures.
@firstbess, Being evaluated and placed on the transplant is something I would recommend, if/when it is offered to you. Is your doctor considering making a referral?