Life and Death

Sept. 24, 2007 — -- 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.

Marie, my decision to go public was an easy one. I felt alone with my PSC for many years before I was able to find support groups online. For the first 10 years of my disease I had only a couple of symptoms: mild fatigue and itching. The itching was the worst; I would not be able to sleep at times because of it. I also would tear my skin up by scratching so much. When my itching had eased my wife would joke with me about that I finally had hair on my legs and my chest. I would scratch so hard I would scratch it off and only had small patches of hair on my legs and my chest.

Many people didn't understand that I had a liver disease -- I looked OK -- and couldn't understand the severity of the itchiness. Trying to explain that it felt like you'd have poison ivy from head to toe was difficult for people to comprehend. I wish you well in the future and glad this story was able to help. That was the main reason I wanted to do the story. I figured if I even only helped one person it was worth it.

Great story! The online transcript mentions your faith and how it helped you make a decision this big … Could you elaborate? I would like to know more about the foundation of your faith that led to such a great response.-Wade, Sioux Falls, S.D.

Wade, I was raised Catholic, and as I get older my faith has become more important and I think it has become easier to be guided by it. Probably because as I get older I realize how much I have to be thankful to God for. Basically, I try to keep it simple, our Lord said to love God and to love our neighbor as ourselves, I wish I could say I always practice it but I do try, and in the end I think what helps me is to give Him thanks, pray, and do my best to treat others kindly. Unfortunately we're all human and sometimes my best falls miserably short.