PBC at 23..

[Fran98xox]

I’m only 23 and I’ve just been diagnosed with PBC last week, truth be told I’m terrified after everything I’ve read online (life expectancy, possibility of liver transplant, etc..) can anyone offer any advice or help regarding this fear? The NHS seems to be moving so slowly with it all too

[lovesoccer]

Hi Fran98xox. I can definitely relate. I was just diagnosed in April and looking on the internet—even at reputable sources like well known research universities—terrified me. I had so much anxiety about my upcoming meeting with my hepatologist after receiving the diagnosis via mail from his office that I took my husband with me and gave him a list of all my questions because I didn’t think I’d be able to articulate. I was trying not to hyperventilate when he walked into the room. Looking back, I’m able to laugh a little at myself. Not that I don’t take this seriously—I certainly do—but he reassured me that we caught it early and really helped me to put it in perspective. Like others’ posts, he said something else is going to get me first. I started on Urso and will have my first follow up lab post meds in October. So, I guess in my logwinded way I’m saying talk this through with your hepatologist rather than trying to self assess via the internet like I did. Stay strong. This is a wonderful support group and we’re here for each other.

[iagra]

PBC is chronic, but, very slow progressing disease. If you'll respond well to URSO, stay on healthy diet, you'll have a long and normal life. I've had PBC for at least 13 years, though formally diagnosed 6 years ago. I've seen posts on this forum by women who had PBC for 20-25 years and still doing fine. Be positive. Focus on productive and fulfilling things in life. See your doctor and do regular labs and checkups. You are going to be fine.

[Hidden in reply to iagra]

Did you have strictures? They found a couple of strictures and I’m afraid of cancer ( my husband has pbc stage 4

[Sydgal]

Hi Fran,

I was diagnosed at a young age too, was told by Doctors it’s unusual to have PBC at such a young age.. but there is nothing to be afraid of Fran, there are many medications available now to slow down the progression.

Please join the PBCFoundation its free to join, they are great and full of facts and information about PBC. Don’t google as it not updated information.

PBCfoundation helped me alot ..

pbcfoundation.org.uk/

You will be ok 🙂

Best wishes.

[gillrich]

Hi to a new fellow beautiful pbc sister ! Always the pbc foundation for all your worries and concerns the support to yoy will be amazing and they can put you I touch with other beautiful pbc sisters join the family uou will never be alone again x Pbcfoundation.org.uk

[OdinsMom]

I was diagnosed at 47 but as I was already stage 4 stage 2 cirrhosis, they figured I had it for 20 years. So in a way diagnosis young is a good thing as you can take the medication to slow the progress now and hopefully never reach stage 4 in your lifetime. I managed without urso, non tolerable, and still managed nearly 10 yrs at stage 4 before tx. Now 63, post tx and doing well with recurrent pbc. Now on ocaliva, without side effects and staying at stage 0/1

[Mama63 in reply to OdinsMom]

Good evening, Could you tell us what TX is?

[gwillistexas in reply to Mama63]

I believe that is for transplant.

[OdinsMom in reply to Mama63]

tx is transplant

[Spankythewonderdog in reply to Mama63]

transplant OR treatment

[Sam1121]

Hi! I totally understand your fear! I was diagnosed (surprisingly) in 2016 and was started on Urso - and eat well and keep my weight at a normal weight and there have been no changes since 2016! I have never liked alcohol but if you do ask your dr about it. Join PBC.ORG.

[rderezin]

Fran..please rest assured you will be fine...we have had the drug URSO which treats your scary condition and is your lifesaver. Look for a local group of people who have this disease and meet with them. Meeting with others for lunch who share this will be really helpful. You will find it easier to get used to having someone to talk with. The most important thing is to understand...it's a disease with a drug to treat it.