I do not know the better option to hope for:
1. That my health deteriorates to the point a liver transplant is a consideration.
or
2. That I remain healthy while knowing the percentage of long-term PSCers who get cancer.
I have decided that there is no right answer between these two options.
Any thoughts out there?
Jeff and Stephen,
It is a hard discussion to respond to. No good answers for sure. My husband has had PSC for 25 years and he now does have cancer in his liver as well. He was doing well until about 6 months ago. He has gone down hill quickly in the past few weeks. We are scheduled for another MRI to see if the cancer is still contained in the liver, which would keep him eligible for transplant. I am scared we are too late and that he does not have enough time left to wait for a liver.
I hope your outcome is better and you can get transplanted soon.
This is a tough one to respond to... I can't imagine that it gets any easier with time. I'm still quite new to this and therefore fairly asymptomatic, bar the tiredness and the dull pain in the upper right quadrant.
I have thought about what would be the better option, even if it is a while away yet, and I can't say that I want to commit to either yet. If I had to choose one though then I'd rather stay healthy for as long as possible, prior to transplant and hope that cancer keeps it's ugly head away. I appreciate that the prognosis is better after transplant but the idea of living on immuno suppressants for the remainder of my life just doesn't appeal right now.
Hopefully a fourth option might even be that, in a decade's time... should I be able to maintain a reasonably healthy liver till then, we may be in a position to regenerate my own liver. That would be a win-win situation. What's wrong with hoping eh...
Till then... I plan for the worst by living now and hope for the best by saving for the future! Not many people know this... but I'm planning to take my 'sabbatical' year in 2020.. while I'm still fit and healthy! Time with friends, family and the world... should be fun! (",)
Thanks, folks. I know it is not a fun post to reply to, but that shows the cruelty of the dilemma I posed and the disease we face. Stephen, I had asked a question of my liver doc of a live donor possibility, and was told it was not a possibility. Not sure why.
Priya, I like your philosophy. The more options the better!
Jeff
Jeff - While I don't have an answer for you, speaking for myself I tend to agree with Priya. My stage is still asymptomatic as well (barring being more tired), but with my having had both Ulcerative Colitis and Cancer (thyroid) I know that my chances of developing liver or bile duct cancer is rather high. I just believe dwelling on something that may or may not happen is kind of pointless as everyone is different and the progression of the illness varies greatly person to person.
I work in Biotechnology for a Company called Genentech, and see all kinds of wonderful treatments emerging for previously untreatable illnesses. I truly believe that in the next 10 years or so a company will come up with a treatment.
So be thankful you are healthy, continue to protect your health, and keep up a positive attitude.
Stephen
danabee said:
Priya, I'm not sure I'd want to wait till 2020 for your "sabbatical." Within 2 years of my diagnosis I had several bouts of cholangitis requiring 4-5 days each of hospitalization, and then I had an internal bleed which was quite scary and I ended up in ICU for several days. After that I was evaluated for and placed on the transplant list. I saw then how precarious and how unpredictable PSC is. As my hepatologist described it, You can go along for quite awhile and feel pretty good, and then one day you crash and burn. And that was exactly my experience this year, after a couple of years of what I felt was a reprieve from PSC. This time I had a very long hospital stay, most of it in ICU, and a long recovery. Go now. Live now. This moment, this day.
Dana Bennett
PSC Feb 2006, seeking live donor now
Priya Patel said:This is a tough one to respond to... I can't imagine that it gets any easier with time. I'm still quite new to this and therefore fairly asymptomatic, bar the tiredness and the dull pain in the upper right quadrant.
I have thought about what would be the better option, even if it is a while away yet, and I can't say that I want to commit to either yet. If I had to choose one though then I'd rather stay healthy for as long as possible, prior to transplant and hope that cancer keeps it's ugly head away. I appreciate that the prognosis is better after transplant but the idea of living on immuno suppressants for the remainder of my life just doesn't appeal right now.
Hopefully a fourth option might even be that, in a decade's time... should I be able to maintain a reasonably healthy liver till then, we may be in a position to regenerate my own liver. That would be a win-win situation. What's wrong with hoping eh...
Till then... I plan for the worst by living now and hope for the best by saving for the future! Not many people know this... but I'm planning to take my 'sabbatical' year in 2020.. while I'm still fit and healthy! Time with friends, family and the world... should be fun! (",)
I like what you have to say - very much! Thank you.
mah437 said:
I have been dealing with chronic health issues for the last 25 years. I remember about 17 years ago, My GI Dr. said that I most likely have two choices, Take the prednisone and end up not being able to walk in ten years, or suffer from one of the illnesses. Well neither one has taken me out yet. I like to think that I am content with the final outcome someday, I guess that I am not afraid to die to put it bluntly. A bunch of years ago I decided that I am not going to let my health slow me down, I am going to go about my business and push through. Yesterday I could hardly stay awake at work, I ended up sleeping for two hours when I did get home. I have realized that I am not going to try and really advance my job or career, maybe just stay current and keep going. There have been times when I could hardly walk, but I would go to work. At times I found it a bit funny that I wasn't even able to open a door, unless it had one of those handles instead of a door knob. But since then medication has brought my joints back to life and against my Dr. advice I have since run a few half marathons and various other races. I am going to just keep doing what I want till I can't anymore.
I deal with my health issues as they arise, but in the back of my mind, who knows how much time I really have. I don't stress out at work or at home, it's not worth it. I have really been wanting to do something that is more fulfilling in my like, and try and get out of the rat race. I guess it may be just something that I am realizing when I really don't know if my conditions are going to take me out sooner or later.
So every day I try to enjoy the things around me, not get worked up over little things, just slow down and not take anything for granted.
We can at least all be thankful for the advances in medicine and the people willing to provide the care. I sometimes think that If I had lived a hundred years ago that there is no way I would have ever made it out of my twenties. (and there are lots of people that didn't)
SO as for your two options, Take care of yourself now, Live life to the fullest, don't let the little things bother you and deal with the issues as they hit you. I am not going to spend my time worrying about my health, my time here is way to valuable.
sorry for the long rant, and I have probably gone so far off topic.
I also vote for the Live each day to the fullest & try not to predict tomorrow~ Tomorrow isn’t promised to any of us. Live, Laugh & Love~
Jeff,
May I suggest another option? Live life to your fullest extent as if PSC was not a factor. We both know that it is, but try not to let it limit what you want to do. I was doing that right up until I got a transplant. About 15% of my liver was functioning, yet my MELD was 16. I needed at least a score of 23 to be considered for transplant. This went on for 3 years. I was hospitalized with liver failure nine times, yet no transplant.
Finally, my transplant surgeon told me I would not live long enough to qualify for a cadaver liver. Go and find a live donor. Long story, but we found a wonderful young woman, and angel of mercy, who donated part of her liver to replace mine. I am alive and well today because of her selfless gift. Consider a live donor transplant. It gave me life I would not have had.
My daughter uses the analogy 'I could be hit by a bus tomorrow' a lot. She has the same worry about developing cancer but thankfully she has a great team taking care of her. Her doctor told her that when she recently became very ill they were concerned she might have a tumour but there was no sign, thank God of any tumours. They told her they will be 'brushing' her often to check for cancer markers and I'm thankful for that. I asked about live donor but they don't do live donor in Ireland, I would happily donate mine and if needed I am prepared to travel where they do. I am always reminding her about the advances in medicine. I am thanking God for every day that she is well. And I agree, there is no right answer to your dilemma just do what you can while you can do it and hope for the best.
Jeff,
Not many hospitals perform live donor transplants. There are some but likely you would need to move.
Who knows, a cure could be found, new therapy as Priya suggests, we can only hope.
Hi Steve
Donor transplants are a complex surgery to set up, and they happen on the donor’s schedule, so you get a scheduled surgery sooner once on the active list. (I had mine 2 years ago). We did not move to Vancouver, but there were huge costs involved, probably less than moving house though. I have been consumed by working on these issues and creating a site dedicated to these problems including fundraising for expenses.
Hi JeffDC
I agree with all the live life day by day forks!
For me the PSC diagnosis was overwhelming and I did not know what to hope for or expect as well. As has been mentioned, it can take a bad turn suddenly. (For me it was being rear ended by a couple playing with their GPS). My MELD score shot up and what was supposed to be a 8 year gradual slide turned int a 3 month crash (literally). I am 2 years post a live donor transplant.
I wish we all had more control over this illness and it’s twists and turns. To relieve stress, working on a plan was a good idea for me. It may be premature, but there are so many pieces that have to fit into place, that learning and preparing can free you up to live your life knowing you got it covered.
Hi Ruby, so does a live donor transplant provide a cure ? are you still dealing with PSC now ?
Hi Jeff DC
I am free of PSC and all my liver numbers are normal and some even low normal! It can come back, just like with other liver transplants. But definitely a whole reset on the liver.
There are issues with the side-effects of the anti-rejection meds. I am small so perhaps more intense for me.
The surgical team will evaluate the live donor to ensure their safety as much as possible. My son was compassionately and professionally evaluated. He was actually given a date 2 weeks before me! I found out from him (he lived across the country at the time).But like all complex surgeries, there are risks for the donor.
The best thing though was having a date for the surgery and being able to arrange for the post surgery accommodation in Vancouver in advance. These issues may not be a problem if you live close to a transplant centre.
Happy to answer more questions.
I have written a little ebook on the issues and my story. Look at CareToHope.ca just rolling the website out.
Ruby
Hi Dana!
Indeed 2020 is a long way yet... as you can tell there is some wishful thinking going on here! :-) To be honest 2014 and 2015 are out of the question as both my brother and sister are due to get engaged this year and married next year so plenty to keep me busy right now :-)
As far as my life goes, as much as I'd like to up and leave, some things require planning (and saving) and a lot of hoping for the best. I'll just have to keep an eye on how things progress over the next few years and take things from there...
Till then... I've read a lot of sound advise through this discussion, and others, which I will endeavour to follow.
Well done Jeff for touching on a topic we all like to 'avoid' thinking about and yet is so close to our head and heart that we probably spend a great deal of our time thinking about.
Stay Positive and Keep Smiling All! (",)
danabee said:
Priya, I'm not sure I'd want to wait till 2020 for your "sabbatical." Within 2 years of my diagnosis I had several bouts of cholangitis requiring 4-5 days each of hospitalization, and then I had an internal bleed which was quite scary and I ended up in ICU for several days. After that I was evaluated for and placed on the transplant list. I saw then how precarious and how unpredictable PSC is. As my hepatologist described it, You can go along for quite awhile and feel pretty good, and then one day you crash and burn. And that was exactly my experience this year, after a couple of years of what I felt was a reprieve from PSC. This time I had a very long hospital stay, most of it in ICU, and a long recovery. Go now. Live now. This moment, this day.
Dana Bennett
PSC Feb 2006, seeking live donor now
Thank you for the information. I will for sure look at your ebook. My husband is 69 years old and in end stages of PSC. He had decided a year ago (when he was feeling better) that he did not want a transplant. Now, they have told us he may only have a few month to live. He sleeps all but a few hours a day, but is not in any pain.
The option to get listed for a transplant is still on the table but we may be too late considering the waiting time. The average wait time in our area is 12 - 24 months. I don't post much on the site, but I read everyone's post whenever they come in.
Thank you all.
Ruby,
I have started to read your book and I have to say that what I have read so far is very informative and well written. I know many of our users will be able to relate to it and find the advise useful as well. I would encourage you to set-up a new discussion, as Stephen mentioned earlier, with a link to the website and book.
Hello Young... I am really sorry to hear about your husband. I have to say... I agree with Stephen on this one... 69 is so young to be giving up the fight. I do hope you guys at least try...
Whatever your decision however, I wish you both well. Thinking of you... Love & Prayers x
Thank you, I am getting my children together this weekend and have a family discussion with him on how he wants to proceed.
Wow! Thanks for the feedback. If it helps one person with this crazy illness, it was worth it. It is an offering from the heart. I am just tweeking a couple of things on the website before posting it on here.
Ruby
Priya Patel said:
Ruby,
I have started to read your book and I have to say that what I have read so far is very informative and well written. I know many of our users will be able to relate to it and find the advise useful as well. I would encourage you to set-up a new discussion, as Stephen mentioned earlier, with a link to the website and book.