Last week, "Nightline" televised a series of segments on life and death. Upon airing each broadcast, we received hundreds of e-mails with questions, comments, thoughts and prayers for the people featured in our stories. Below are their responses to some of your thoughts.
Thank you for your contributions.
I was diagnosed with PSC at 57 years old … what were some of his symptoms he started to get right before his liver was in great need of a liver transplant? I hope to hear from you soon. Thank you and God Bless! -- Vivian Coleman in San Antonio, Texas
Vivian, as your PSC progresses you will feel tired and lethargic. For me the fatigue started around nine to 10 months before my eventual transplant and was really bad the last three months. I also started to develop encephalopathy, which is a medical term for confusion and forgetfulness. In April I had to stop driving. In late May or early June I started to have trouble using my computer and reading. It was difficult to concentrate on almost everything. I would be in a conversation and forget what I was talking about halfway through. Then the last few weeks before my transplant the encephalopathy progressed to the point that I couldn't even use a phone. I would try to dial a number and transpose digits or forget numbers. I hope this helps, and good luck in the future.
What are the potential solutions to these dire situations? As a fellow sufferer of PSC since 1989, being evaluated for transplant on Oct. 1 … I might be facing the same excruciating search for a donor at some point soon, but having no immediate family, close friends or the kindness of strangers may be my only hope…-- Jeff Sullivan in Fort Lauderdale, Fla.
Jeff, I wish there could be organs available to everyone who needed them, but unfortunately no matter what policy they have for organ donation there just aren't enough organs for everyone. I felt equally frustrated when faced with the prospect of waiting for a liver knowing what the odds were of getting one in time. I was given a book that really helped a lot. The book is about an Olympic snowboarder named Chris Klug who also had PSC. The book is called "To the Edge and Back: My Story from Organ Transplant Survivor to Olympic Snowboarder." It is a great book.
The risk of cholangiocarcinoma or other type of cancers is very serious. I was given many CT scans, MRIs and yearly colonoscopies in hope that if I did develop some form of cancer it could be found early. The last four or five months my blood work showed tumor markers were rising with each lab draw, but they never saw anything.
A few weeks after my surgery, pathology results showed that I had a cancerous tumor in my old liver. I was lucky that it was contained in my liver and had not spread. For anyone with PSC their doctors should always be on the look out for cancer. I wish you well in waiting for a new liver and I hope this helps.
I suffer from PSC and autoimmune hepatitis, so I was very glad to see this show. Thank you Stephen for having the courage to go public. It sounds as though you had many years with the disease when you were symptom-free, which is great! I'm very glad your transplant went well, and that you're back to being healthy. And I'm very glad you were able to find a living donor, who is also doing well.- Marie Nilsson in Tarzana, Calif.