I’ve heard quite a few different things when it comes to psc and transplant.
Some people say that eventually (and I know eventually depends immensely on an individual person and the progression of the disease) everybody with psc needs a liver transplant. But I’ve also heard people say that some people never need one.
I understand that if you are diagnosed at around 70 years old and the disease progresses slowly it’s more likely that you will die of something else. But aside from those specific cases, is it true that some people don’t need a transplant?
I’m not even close to transplant right now and I don’t fear it at the moment, I just like to know the facts and it’s something I’m curious about.
Is there any record of this? Like a certain number or percentage of people with psc who will need a transplant?
And if not an definite number what do you guys think is the closest to the true number from your experience and your knowledge? Is it more likely around 40 percent? Or 80?
I apologize in advance if I’m asking too many questions on this board at this moment! I’ve just noticed lately that it helps me to deal with this diagnose by understanding as much as I can about the disease and hear from people who are personally diagnosed or have someone very close to them with this disease.
This question comes up pretty often in PSC circles and I don’t think I have ever seen a definitive answer. The good news is that the latest population based study I read put the median time to transplant at 22 years after diagnosis. https://www.ncbi.nlm.nih.gov/pubmed/23775876
And remember that people are getting diagnosed earlier and earlier so that number is probably higher for people who are just recently diagnosed. Also, there are many new drugs and treatments in the pipeline so hopefully you will be able to benefit from those, too.
Thank you crewmom for your reply and rather optimistic view on the outcome for most psc’ers.
I’ve also been diagnosed very early on, so I guess that is a plus.
We never know what might happen but I’m glad that for the last years they’ve made some progress on the disease with more information, early diagnose and trials! And I hope it will save or expend lives of a lot of people affected by psc!
Hi Sophie, I’m sorry, but I don’t have any numbers for you either. But I can tell you that I’m 60 and was diagnosed with PSC about 7 years ago Luckily my doctor tells me that mine is progressing slowly. I know things could change, but my doctor told me [with a little grin on his face] that I would probably die of something else before PSC killed me…lol…I felt so much better…lol…I think sometimes with PSC the unknown can be worse than the reality because it really does progress differently…I just try to gain as much information as I possibly can, do everything I can to slow the disease down, pray, and hope for the best God bless you…Dave
I’m glad to hear that your psc is progressing slowly! And I think it’s amazing that you try to do everything in your power to help slow the disease down. There isn’t much we can do, but I think we should always try. I hope you won’t be having much symptoms and it will continue to stay stable or progress slowly!
And yeah I absolutely agree that the hardest thing about PSC is the unknown, the uncertainty. But I guess it’s something we have to deal with and not let it define us or overpower our life!
Tough question to answer due to the unpredictable nature of this disease.
I’ve seen different statistics that the average time from diagnosis to the need for transplant is 12 years. But that is “average”. Luckily, psc generally advances slowly, and although we can be asymptomatic for years, we have to be ready at any time for symptoms to appear.
When I was diagnosed just 7 years ago, the Drs talked about an average of 10 years survivability from diagnosis, or until transplant is required. These days, I’ve mostly heard figures more like what Crewmom cites above, in the range of 20 years. I take that to mean that medicine has progressed quickly in recent years. I know there’s lots of work being done to understand autoimmune disease.
But then individual cases can progress very differently. For example mine is currently progressing slowly. I’ve had almost no blips that showed anything on blood tests since the first crisis. But on the other hand, I understand that one of the hallmarks of the disease is progression is very variable, both within one individual at different times, and between individuals.
Yes luckily it progresses slowly for most people. I’ve also heard quite a few people on this forum who have been diagnosed years ago and are still doing well enough! It is indeed so unpredicatable…
Yeah I’ve also heard that the average time from diagnose until transplant is now closer to 20 years! I’ve heard it is also because a lot of people (like me) have been diagnosed very early/without any symptoms.
I’m glad to hear that your psc is progressing slowly! That is, for now, great news
One question about transplant (after all the answers I’ve gotten): does everyone with psc eventually needs a liver transplant?
That is something that is still not clear to me. Some information/articles say that ‘you might need a liver transplant’ but I’ve also heard people say: all psc’ers will need a transplant. I get that there is an average time for transplant and that it completely depends on the progression of the individual when transplant is needed, but does everyone need it eventually?
Sophie,
Regarding your question of whether everyone with PSC will eventually need a liver transplant. Although one can’t say for certain, I would say that in most cases the answer to that would be yes. PSC is a progressive disease, there is no known cure so all things being equal a transplant is down the road for PSC patients. It’s the timing of the progression that is key. What I tell new PSC patients especially is that you just have to go out there and live your life to its fullest even with PSC. That is especially true with pediatric patients. These young people have to have that desire to just live life and when PSC rares it’s ugly head up and they have a day they don’t feel as well, just rest or take it a bit easier. You just have to listen to your body, it will let you know. I think it is very important that PSC patients be very clear with their family especially and educate them all you can on what this disease does to the body. If your family is behind you and supporting you along the way, it will make things much easier. You just cannot predict how you will feel on any given day usually. I went relatively symptom free once I got my itching under control with medication for several years before the need of ERCP intervention increased, nausea, muscle wasting, weight loss, etc. As the disease gets to the point of needing a transplant many more things will show up health wise and you just have to deal with it. I know we are all different in how our body responds, but I can honestly say that I didn’t miss a day of work through the years I had PSC although I may not have felt the best each day. I just pushed ahead and then when I came home I would collapse in my chair many times and just have to rest. Exercise is very important through these years you are feeling pretty good. You’ve got to keep your body in as good of physical shape as possible so when things do start getting worse your body is ready for that transplant. The day I got called, I was actually at work and drove myself to the hospital. At the check-in they couldn’t find a wheelchair to wheel me up. I told the guy, look I’m here for my new liver, let’s go and we will walk to that elevator! And that we did. Sorry to ramble on like this, but it’s just so overwhelming of the miracle that occurs when that special day comes. Take care and thank you for the contribution you are making on our forum.
Probably Mark’s answer is better than anything I could come up with. He’s been through it, I haven’t. But I do know from my experience that the stuff he writes about exercise and eating very carefully and taking care of yourself, and living right now for right now is very important.
Mark, what a eloquent way of describing all of this! Thank you for this clear reply and your own transplant story. I’m amazed that you still worked; even on the day of your transplant! I can only imagine how much impact such a day has on your life and later on for your quality of life. It truly is a miracle!
And I agree with you and Bob that taking care of yourself and living in the now is extremely important!
I know that it’s still such an uncertain disease which affects everyone differently (like Crohn’s disease and UC) and that is something we have to accept and deal with. However I do feel that knowledge helps me to have some control over my own life. Having more clarity and answers on the disease, along with personal stories from other people affected, helps to understand and handle all of this better.
Mark, thank you so much for this post. It helps me understand my son’s approach to the disease…I’ve got it, it is what it is and when I need a transplant I’ll get one…As a parent and nurse, I’ve had overwhelming feelings of helplessness, uselessness and sadness because I just want to fix it. There is a fine line as a caregiver of providing support and pushing how you would approach having the diagnosis. I am just so appreciative of your words.
