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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Hi! I am Maryann


#1

Hello. My name is Maryann. I am 51 years old, and I was diagnosed with PSC a few months ago in March 2018. I am a wife and a mother. This intro will have to remain short because it is time for me to take my cholestyramine. Thank you for the add.


#2

Hi Maryann,
My name is Lynne. I am 55 from Pennsylvania I found out in February that I have PSC


#3

Welcome! This is a great group!


#4

Welcome Maryann to this PSC group. I’m glad you found us and we want to be here for you as you go through this journey with PSC. Please reach out anytime. We are one big family here and there’s always someone willing to lend an ear and give good suggestions to whatever’s going on with you when you post.

Mark


#5

Thank you, Lynne. Great to be in touch with you all.


#6

Thank you.


#7

Thank you, Mark.


#8

Hi Maryann,
I’m Danielle I’m 52 and found out in Nov '18 that I have PSC.


#9

Hi Danielle. The good news is that, I’m told, in older people PSC is usually a much slower progression. Down side is that, say I need a transplant in 10 years, will they do it for a 61 year old? Would it even be worth the risks? I’m curious if you have had lifelong undiagnosed issues? I have, and now realize that they were all PSC-related.


#10

Maryann,
Hi. Not trying to discourage you or anything, but I have never heard that older people progress at much slower rate. In fact just the opposite is generally thought in the circles I’ve been in. Although the rate of progression is different in every PSC patient, those diagnosed at a young age generally progress at a much slower rate.
As far as transplant is concerned 61 is definitely not too old for a transplant. I was diagnosed in 2011 at 46 years of age and was transplanted in 2015 at 51. I’m now 3 years post transplant and doing well. I certainly believe in looking back now, that I had PSC many years prior to my diagnosis. I had this year round sun tan and just thought I was of a darker complexion. But now after transplant my skin is whiter than my wife’s!
My biggest recommendation to you is that you make sure you are under the direct care of a hepatologist on the faculty/physician team through a major hospital that does liver transplants. Bid your favorite local GI goodbye and stick with a specialist. Progression can increase rapidly in a relatively short amount of time. In January 2015 when I was listed for transplant my MELD was 12. By the middle of July, 2015 it had spiked to 36. I was transplanted two days later. And like I said, we all progress at different rates so don’t be discouraged or become fearful. Just take one day at a time and live your life and all your plans with as much zest and vigor as you can. When PSC rares it’s head up, just take a step back and deal with it, but DON’T let PSC rule your life!
My very best to you and yours!

Mark


#11

Thank you, Mark. I appreciate your knowledge and support. I am not fearful nor discouraged (at the moment). I had symptoms for so long and knew that there was something very wrong. I came to terms with that a long time ago. Happy to know what it is, and trying to gather info and support. This seems like a good place for that. :wink:


#12

Hi Maryann,

Welcome to the group that no one wants to join. I am 51 also, and have been recently listed for transplant. Looks like you have received plenty of good advice, so I’ll just add my best wishes for you!

Keep on living a happy life!!
Doug


#13

Maryann.
Welcome to the group.
My hepto did say that sometimes in later onset PSC it can progress slowly, but was then very quick to add that there is very little known about the disease and that there needs to be much more research and drug funding spent on it. He recently returned from the good old USA where he attended a conference and he stated he was very pleasantly surprised that at the conference he attended there was a marked increase in drug company funds being spent on this issue and there was a general air of confidence that in the next 5-7 years things may be better on the knowledge and treatment front.

Not sure if that was just to ensure I keep my head up, he can now legally write his trip to the USA off his tax bill or it was the actual case, but I will take the first and third options.

Good luck with your journey and keep living life to the full.


#14

Thank you so much.


#15

Thank you. :slight_smile: