Just diagnosed with Cirrhosis at 23 y.o.- information or advice?

Welcome to the Hep forum, Emily.

We are those with all sorts of liver disease, and those who love them. My husband, themister, is the one with liver disease. He has had stage 4 cirrhosis from Hep C, at least 10 years. He was diagnosed in 2005. We don't have a clue how long he had cirrhosis before he was diagnosed. The only side effect he had was some odd fatigue at that time. He carried on with no other problems until 2010, when he took early retirement because he became too ill to work.

At this time, he is waiting on the transplant list, and he has had many problems with end stage liver disease. We are very hopeful that he will obtain his transplant and go on to live many more years.

We don't see many young people with cirrhosis on our forum. You said you were diagnosed at 16. Was this recently? I can understand this must be very difficult for you. I am not well versed in your disease, but I do understand cirrhosis. We are here for you.

Others will be along to answer some of your questions and welcome you. Big Hugs

Thank you so much for your thoughtful reply. I was diagnosed at 16 in 2008, and now at 23 years old it has progressed to the last stage of the disease (cirrhosis). Being so young with such a serious disease, I do not know what is in store for me, particularly with how it will affect the major lifetime events ahead of me (marriage, family, job advancement). I am glad I found this forum for support

Well, we are big (HUGE) believers in living the life you have to live, at our house. It has been rough for a couple of years, but themister did have liver disease for 30 years, or more with a totally, normal life. At least 10 with cirrhosis. We each get just one day at a time. No one can see the future.

Learn everything you can about cirrhosis, about the various complications to watch. Make sure you are insured. Don't drink alcohol, eat a low sodium diet. Breathe. Big Hugs

Emilee...we are glad you returned to our forum....Sean has been our PCS poster boy and now he has a team mate! Not that anyone wants to be on that team...but as themiz says..we have to live the life we are dealt.

I have spent some time this evening looking around the Internet as PSC isn't something we hear about every day. I have a dear friend with a similar issue, Primary Biliary Cirrhosis, and hear first hand of her daily life. She has had this dx for years and years and goes along on her Ursidiol pills, no booze, plenty of water. Her lfts are totally normal. She gets tired and lives sort of a 24 hour life....up and down day and night....resting when she is tired and doing things when she is not. I forgot to say she is 67 years old and NO ONE has talked about transplant with her (yet).

That is what I wanted to look up. about TP and advanced PSC. I found out that folks with cirrhosis can get TPed but that they often go years and years with the condition, meds, and occasional ERCP (with or without stents) to keep their ducts open. Sean's report that he has a family, career, etc is very encouraging. My friend was a teacher and worked for a very long time, but retired about 3 years early as she was getting too tired.

The items I read were that those with PSC, after years and years, may need transplantation and their post transplantation success is very good. Especially if they are WELL otherwise. My next question was whether those patients had recurring PSC in the new liver. And the answer was "sometimes." My partner had cirrhosis and Hep C... and his Hep C definitely recurred (it does).
We would have loved an answer like "sometimes."

I agree with themiz...we don't know where you are, but find out where the best major medical center is near you and get your annual appointments there if you are not already. If you EVER need advanced care, like a transplant, you would already be in their system. Most of the old timers here go some distance to a hep at a major medical center.

We go 125 miles to a center. Themiz and themizter moved to AZ to be near a center. I think Ziff drives about 4 hours to UNC. **David** has to take a ferry and bus. If you have something "special," special care needs to be taken.

Best to you, let us hear how you are doing.

Hugs,

Mama Lama

Wow, I am so touched by all of the in depth answers and support coming from this forum! In such a difficult time, during which I am away from all my family, it makes things easier knowing some people "get it."

I am glad to hear some "success" stories of people living with cirrhosis and having a somewhat regular life. It gives me hope.

Sean- thanks for responding! I've never talked to anyone else, either in real life or online, with PSC. Nice to know another person. I have been taking Ursodiol since 17. They can't tell for sure whether or not it helps the PSC, but my doctor believes it might. Other than that, not much else you can do, huh? The tricky part of PSC..

I should note that I am seeing a hepatologist and have been since 17 y.o. (after diagnosed with PSC). At the moment I am in Boston (moved here recently) and with Harvard's hospital and it has been such a reassuring feeling to know I am in good hands. I will have to prioritize staying near good medical care throughout my life. My doctor is continuing to monitor the PSC and is now taking the necessary precautions for cirrhosis (ultrasound to check for cancer every 6 mo, blood work every 3 mo, MRI every year, endoscopy to check for esophageal varices, among a few others). I have been advised not to drink, etc, but I will be meeting with my doctor to go over in depth other limitations. For example, can I take tylonel...advil?

Lots of questions I have to discuss with my doctor...

I assume you're going to Mass General. They took care of me for 4 years with End Stage Liver Disease, then a transplant and I'm now 5 1/2 years out. You can't do any better than MGH. Dr. Pratt took care of me and I owe him my life. MGH will not treat you like a number.

SyXx,
I'll make a suggestion regarding Cat scans. They hit you with an inordinate amount of radiation. At first my docs had me doing an ultrasound, then 4 months later a Cat scan, 4 months later an MRI and repeat. After years of this, I told them no more Cat scans, as I didn't want to absorb so much radiation. They were fine with that and we went to an ultrasound every 6 months and then an MRI in another 6 months. MRIs and far more accurate than Cat scans and ultrasounds. There's no reason to have so many Cat scans when there are safer methods. If it was an emergency and a Cat scan was called for, that's fine. Otherwise I won't do it.

You're right about advil, if you must use something, tylenol is all right.