Send positive thoughts my way - thanks!

danabee said:

Dear Paul,

What an eloquent statement of what it's like to be sick with PSC as well as an IBD. I think you speak for a lot of us. Thank you so much for your kind words. At this point, I'm doing pretty well, but I know that can change in a heartbeat. I try to take advantage of the good times and live life to the fullest - and see myself as available to others to help them through their tough times. I, too, know what it's like to be alone and lonely and just want the presence of a caring friend. I love the volunteers who work in hospitals and who make themselves available in those ways. Whatever it takes, you know?

My MELD stays low no matter how crappy I'm feeling. So I'm asking the transplant committee to put me on the active list (I had breast cancer a year ago now and have been inactive because of it) so I can look for a live donor. I know that's what you did.

Deb, I will try calling you today. I had a lot going on yesterday and didn't get to call. But today it's a priority, top of the list.

Take care,


Hi Dana,

I know so well what goes through your mind when your MELD is low and you are sick as a dog. I got up to 16 and was hospitalized about every 6-8 weeks with liver failure when I was tested and included on the transplant list in Milwaukee. They only had a cadaver program. My doctor told me he expected that I would go into liver failure and not bounce back. That never happened. He thought my MELD would then go past 23 (the threshold they used for actively seeking a match) and that I would get a transplant when I got to about 29. That would happen in a relatively short period of time depending on how rapidly my liver shut down. Nice thought, isn't it? My score dropped back to 12, but I was getting sicker and sicker. I could hardly do anything. They had me on 23 drugs. My family and friends have since told me they didn't expect me to live much longer.

The transplant surgeon at UW-Madison told me I needed to find a live donor because I would not live long enough to get a cadaver. They classified me with End-stage IV liver cirrhosis. After I received a live donor liver transplant nine months later, the surgeon that removed my old liver said it was about 10% functioning. That, in a nutshell, capsulizes what is wrong with MELD and PSC. Your MELD number is low and look how you feel? Yet, they do not take that into account. It doesn't measure how sick you are with PSC. Your doctors probably have an estimate of how much liver function you have left, but probably don't want to tell you because they know you will ask why the heck you are not getting a transplant. I understand your suffering and frustration.

At the hospital where I finally got my live donor transplant, Northwestern Memorial Hospital in Chicago, they are just starting a "benevolent donor" program. People that want to help another person (stranger) are being screened for potential donation. I know it is just getting its start and that there are a lot of questions to be answered, such as the person's emotional stability, health, availability and medical ethics questions about live organ donation. It is still not without controversy.

My donor was my daughter's high school girl friend that she had not seen in 15 years. Kathy (my donor) saw the story about my disease on a Facebook page my daughter, Heather posted. No one in my family was a match, and two additional friends were tested, but disqualified. Kathy knew in her heart that she wanted to be my donor and that she would be a match. She was tested and was a perfect match. Three weeks later, we had the surgeries. Both of us are doing fine. Kathy and Heather and my wife, Dee are my heroes!

If you are at that point where you need to consider live donation, see if your hospital does both live and cadaver transplants. If not (and it is not considered an insult by doctors if you get qualified at another hospital), find a hospital that does live donor liver transplants, preferably one that does 9 or more per year. It is quite a different surgery with a live donor liver. You are only receiving 2/3rds of the large lobe. It has to be attached to the core where your old liver was. The donor and you will both need special care that is different than a cadaver liver. You both will feel very fatigued because you both have only part of a liver. The donor will regrow their's in two months. You will need 5 to 6 months to grow to full size. Cadaver recipients recover quicker because they have a full size organ, however any transplant can cause some complications.

I knew I could not continue much longer with PSC. There was no turning back, for me. It is a big surgery, but it is nothing you cannot handle. I hope and pray for you, that one day, soon, you will be free of PSC. If you go the live donor route, don't be afraid to ask people. That was my biggest hang-up. Network. Let your need and blood type be known. Then pray. The need you have and the desire of someone to help are all arranged for in heaven. I believed that good would and could come my way, and it did.



And rue the day it returns! PSC that is.

Hi Paul,

Thanks for telling me your story of live donor transplant. The hospital where I'm on the transplant list does do live donor transplants. I wish they did the "benevolent donor" thing, too, but they're very very conservative and will probably be one of the last centers to do it. But they have 500 people on the liver tx list! And they did only 82 transplants last year. I actually wrote a letter for potential live donors two years ago - and was always too scared to send it. Now I really must. My doctor actually told me not to use Facebook - just shows how little she knows about the culture we live in and how powerful social media is. I have a blog, too, and I'm going to put it on my blog. And I'm going to tweet it, sending out a link to the blog and put it even farther out. I am desperate to be done with this illness and all the financial troubles with it. It all just gets worse over time.

Thanks for your encouragement once again. I'm polishing up that letter a little bit and send it out, hopefully by the end of the week.