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Oldest person with PSC


#13

Hi Dakota,

Do you follow any special diet or nutritional requirements? Any exercise you recommend as well?

Eliza



Dakota said:

I was diagnosed in 1993 with PSC. My doctor at one point stated that I would probably be in liver failure by 2004. My illness has progressed very little---no abnormal liver function tests, but I do have some itching (developed two years ago) and discomfort (for many years). I had a dilatation and stenting of my common bile duct in 1998. I am now 68. My doctor says I am one of handful of patients with PSC who have remained stable in his practice. I realize I am blessed and am thankful everyday.


#14

Eliza1976

I have not followed any special diet. For many years I have taken a multi-vitamin, calcium and Vitamin C daily in addition to regular medications. I exercise regularly and for much of the past 20 plus years my weight has been under control. My current BMI is under 25.

eliza1976 said:

Hi Dakota,

Do you follow any special diet or nutritional requirements? Any exercise you recommend as well?

Eliza



Dakota said:

I was diagnosed in 1993 with PSC. My doctor at one point stated that I would probably be in liver failure by 2004. My illness has progressed very little---no abnormal liver function tests, but I do have some itching (developed two years ago) and discomfort (for many years). I had a dilatation and stenting of my common bile duct in 1998. I am now 68. My doctor says I am one of handful of patients with PSC who have remained stable in his practice. I realize I am blessed and am thankful everyday.


#15

Just finished seeing a specialist in the field and asked this very question. Our response was, 'it varies", however, here's the good news - she's got many patients 80 years + still ticking with the disease. She believes in the near future we'll see different "categories' of the disease; she said many people live their lives with it without issue, some have some issues (itching, fatigue, etc.), and some need transplant. Unfortunately no way of knowing, but it's not a "terminal" diagnosis in that once diagnosed, you're on the ten-year-to-death train.

Hope that helps, feel free to PM me w/questions. :)


#16

My husband was told he could not have a live donor. I assumed ALL patients with PSC could not use a live donor. Does anybody know when a live donor is used?


#17

Oh my gosh, sorry, but it sounds like it's time to get some more opinions. Now there may very well be situations where a live donor is not an option, however, every single *qualified* specialist I've spoken to (and unfortunately, there have been a lot now) called live-donor a "wonderful thing."

You might want to try the Mayo Clinic, Phoenix, Arizona (Dr. Aqel, Dr. Lindor) or Mayo Clinic in Rochester, Minnesota (PA Andrea Gossard, Dr. Gores, Dr. Talwalker).



Sarah A said:

My husband was told he could not have a live donor. I assumed ALL patients with PSC could not use a live donor. Does anybody know when a live donor is used?


#18

Hi Sarah,

I have a live-donor liver. I got it 3 years ago. I was carefully evaluated for my general health to survive a live-donor transplant. The difference between a live and a cadaver organ is that the live-donor organ is 2/3rds the size of a cadaver organ. Both start functioning immediately, but the live-donor organ begins regrowing right away, thus putting added stress on the patient's recovery. I met cadaver recipients whose recovery took less time and who did not have the prolonged, deep fatigue that I had until my new liver grew to full size (about 5 months). I'm guessing that if a patient has some risk conditions, the transplant team will opt for a cadaver instead of a live-donor organ. I would question the doctors why he could not receive a live-donor organ. If you are not satisfied with the answer, get a second opinion from a transplant center that does live-donor transplantation. It was evident that I would not reach the MELD criteria for a cadaver liver, which is common with PSC'ers. The MELD criteria is flawed and fails to measure how sick a PSC patient is. Be your own best advocate. Question things and if they don't leave you with a confident feeling, get a second opinion.

Sarah A said:

My husband was told he could not have a live donor. I assumed ALL patients with PSC could not use a live donor. Does anybody know when a live donor is used?


#19

Lilly, Paul and Stephen,

Thank you so much for the information about live-donor. Paul I am thrilled to hear about a successful transplant. My husband explained that as of now his autoimmune hemolytic anemia is the reason a cadaver liver would be best. His first transplant was also cadaver. Again, thank you and I will keep you all posted.

Sarah


#20

Following...

I'm really curious about this - I was diagnosed earlier this year and this was one of the first things I wanted to know.. i.e. what is the best possible outcome for someone diagnosed with PSC? I'm still even uncertain about what percentage of people require a transplant..? is it almost everyone or as low as half? My hepatologist gave me the impression that it's quite possible to go 30 or 40 years without a transplant or even never need one, but that just doesn't seem to be reflected by PSC'ers' accounts on the internet, who all seem to be post-transplant or within the 20 year from diagnosis mark. It makes me wonder whether she is just being optimistic for me since it is technically possible given the outcomes are so variable for every one of us...


#21

I have seen couple of studies saying median time from diagnosis to either transplant or death us 10-15 years. More recent Dutch study concluded median time is 20 years (maybe because earlier diagnosis in the Netherlands?).

So, by definition, about 50% of psc patients survive longer than those median times (some surely significantly longer). So >30 years sounds realistic.

I heard that the first vanco treated psc patients are doing fine (>20 years from diagnosis, treated in mid 1990s).


#22

Thanks for this post Ted, I hadn't heard of vanco before so looked it up - seems very promising! Going to mention this one to my gastro/hepatologist next time I see her...


#23

Ted, do you know if they are still in remission with the Vanco?


#24

Dr. Cox had a presentation in 2012 with some stats. The first patient was treated in 1998 and as of 2012 Dr. Cox had treated 33 patients. All of the patients either normalized or had improvements in biopsies/imaging/LFTs, most saw improvements in IBD, and no patients experienced significant side effects. There was no mention of endpoints (transplant, cancer, death) for any of the patients.


#25

http://sm.stanford.edu/archive/stanmed/2011spring/article6.html

I think first patient was treated in 1993. I spoke with one of the researchers recently and got impression that all early patients (children/teens) are fine, as far as they know (I.e. no transplant/death).


#26

Ted, you are right on the first treatment date. It is 1993, not 1998.


#27

I was diagnosed with PSC in 1991 after returning from the first Iraq war. I was in a very advanced stage and was admitted to the hospital on Christmas Eve with liver failure. They took out my destroyed gall bladder and I spent 11 days in the hospital because of the liver failure. I am now 71 and I am asymptomatic except that I get tired when backpacking over 7-10 miles. I have not had a liver transplant and no other medical treatment. I do not take medications except for a baby aspirin. My labs including liver enzymes are normal or close to normal. When I tell Doctors that I have PSC they often don’t believe me until they review my medical file. I still work as a Physical Therapist and actively run, bike, XC ski, hike etc. I do not worry about when I will die, I count each day as a great blessing. (I may die from being eaten by a Grizzly as I sometimes hike alone for my photography addiction in my home state of Montana.) I have no idea how long you can live with this condition but I am now 26 years out without any current symptoms. BTW PSC has been a great teacher for me. When people come to my physical therapy office I can truly say nothing is impossible.
I know I have been very fortunate and my wish for you is that you never give up hope, it is the first key to recovery.


#28

Welcome Lance, to the PSC forum and thank you so much for your positive and hope-inspiring post! We’re glad that you joined us, and we hope that you will continue to support others with your positive outlook.

You’ve revived one of our older threads, which is great! By doing so, the others on the thread will be notified by email of your comments. Since they last visited, we have changed platforms, so I should give them the instructions for logging into our new system the first time:

How to get back into our new PSC platform:

  1. Go to the usual address, livingwithpsc.org
  2. Tap “Sign In
  3. Enter your email address in the “User name” field.
  4. Tap “Forgot my password
  5. Check your email (inbox and spam folder) for instructions.

Easy. I hope we’ll see everybody come back for what I call a “Thread Reunion”!

Seenie from Moderator Support


#29

I was diagnosed in 1997 and my lab tests are closed to normal now except for ggt (3 times greater that the upper normal limit). I take urso and rifadine to stop the itching. I’m only tired for the moment.
The disease is progressing very slowly.


#30

pstriolo,
Hello. I’m glad to know that your PSC is progressing slowly and that you are doing so well. That is wonderful. I hope you have many more quality years of life. And yes, tiredness sure is one of the side-effects in living with PSC. Good to hear you chime in!

Mark


#31

Great news Lisa1 ! We are new to PSC. What types of vigilant monitoring do your docs do? Just want to make sure we are getting the best care. Thanks :slightly_smiling_face:


#32

Continuing the discussion from Oldest person with PSC:

I’m 76 and was officially diagnosed with PSC in 2015 when I jaundiced. Have had Crohn’s for many years with resection in 2002. Looking back it was 1963 when I tried to give blood and had an elevated ggt that was the first indication of liver involvement. Alcohol was imbibed only occasionally. Pruritis was a problem for a number of years without answers. No one connected the dots. I developed ascites for the first time in July and have responded to diuretics. Saw the Medical Director of Liver Transplants yesterday. Meld score too low and age too high for LT. So my pacing was slow-may it continue that way.