What are the chances I will need&get a liver? 27yrs old&scared for my life

[mabbott]

Anyone know?

[mb309]

Has the doctor told you what stage that you're in? Being diagnosed of PBC is terrifying at first. It wasn't until I became a member of this support group & started realizing just how slow PBC's progression is that I calmed down immensely. If you were just diagnosed know that most people, if they are compliant with their medication, will never need a transplant, and when it's their time to go will most likely die of another cause. I was diagnosed at the age of 30, I'm 34 now. There's more I can say, but I said what I thought was most important at this time. Take a deep breath, it's going to be okay.

[mabbott]

Please tell me more. I cant eat or sleep. I cry for my babies every second.

[enalynot]

stop panicking I was diagnosed Feb last year I had never heard of it before so I went on the internet and frightened myself silly joined PBC Foundation and looked at other peoples symptoms and there are lots worse off than me I don't have hardly any symtoms like many others. I have only developed auto immune arthritis but I'm 65 so that could be my age my mum didn't have it and my children have not got it so stop worrying please...

[mabbott]

I'm scared because I am only 27 years old... I'm afraid of what that means

[cazz22]

Hello mabbott.dont be scared.everyone at first feels like you but start to read the posts and questions on this site DONT google it .the information is outdated.get in touch with the pbc foundation Edinborough. For correct info.it may never get any worse than you are now.many of us have no symptoms.lots of us have had it for decades.you will see your children grow and most likely theirs too.find out good advice from here and foundation and you will calm down.promise.i only found out in jan13and now don't even think about it until I go to hospital.with a bit of luck there will be a cure for it in the future too.keep soot ive and remember you are not on your own.

[Sunny_snowflake]

Hi dear!

I can understand your feelings. Some days are better and some worse, today I cried (PMS), but then I have moments that how wonderful this our world and life are. It would be ideal situation, to live without any diseases, but on the other hand, there could be some another accident waiting. I just read how they have found some kind of new drug/medicine for the hepatitis C, so I have these positive moments, that maybe we will also witness the drug invention for the pbc. Many can understand the feeling of falling into abyss, but try to jump over it, when that moment comes, start to do something, keep yourself busy. Take piano lessons! You have to practice every day, or something else. Leave the sugar out for starters, it's anyway unhealthy product. If you want to discuss more or need a virtual shoulder to lean on, this place is great for that, or you can send me a mail. A virtual hug.

[teddybear7]

Join PBC foundation if not already your fears will ease honestly. They've been super xx

[Oidra]

I am 73, have PBC and enjoy life. I have 3 children, 8 grandchildren and have traveled the world. As suggested join the PBC Foundation and read the facts. I have never had a biopsy but take Urso and have 6 months check ups. I don`t waste time thinking about things that may never happen and PBC has never stopped me doing anything I wanted to do. You are young and have your life in front of you. Don`t be afraid but get out there and live it.

[Hidden in reply to Oidra]

Hello Oidra.

My motto exactly. I might be what you'd consider young (recently turned 50, PBC diagnosed 4yrs ago) but like yourself, I've never had a biopsy and have been doing well in the last 3 1/2 yrs now. I refuse to think about what might be, to me that would be wasting the life I have now.

[spoul]

I was diagnosed at age 39 although I suspect I'd had it a lot longer. I am now 16 yrs since diagnosis so try not to worry too much. Like the above posts say ring the Pbc foundation and speak to Colette she is wonderful and will put your mind at ease

Take care xx

[Hidden in reply to spoul]

Hello spoul. It is also worth mentioning that LiverNorth do that free dvd on PBC. I got it quite some time ago but have to admit I flicked through it as I wasn't really that interested but my husband did watch it all. I just find I do not want to know what could be out there, I'd rather make memories and do things now other than sit around moping about something that I can't exactly do much about except look after myself as best I can.

[mabbott in reply to spoul]

Ring the pbc foundation?

[spoul in reply to mabbott]

Yes they have a help line.......if Colette is there she will speak to you. She was the founder and what she doesn't know about Pbc not worth knowing......

I spoke to her once and she is so helpful just tell her your frightened and I'm sure she'll put your mind at rest x

[mabbott in reply to spoul]

Do u know how I find the number

[mabbott in reply to spoul]

I live in the US and can't call. Do u know how to call out or her email? I would love to speak with her asap

[mabbott in reply to spoul]

I have been trying to call out of the US with no success. Does she have a personal email that you might know where

[spoul in reply to mabbott]

I'll try find out for you x

[mabbott in reply to spoul]

thank you so much I have been searching all day today and all last night for support groups for somebody to talk to and I haven't found anyone. If anyone knows anything I would really appreciate it

[spoul in reply to mabbott]

Just messaged you with an update x

[jenny66 in reply to mabbott]

pbcfoundation.org.uk, or email [e-mail]. i hope this help.

[Hidden]

Hello mabbott.

I think the mind can run wild if you are in the early days of being informed you have PBC.

I can honestly say that although I know that PBC could and I say could end in a liver transplant from diagnosis of myself back in Dec 2010 I have not thought about anything like this.

After the initial shock you have something you will always have, time that starts to pass by and you are improving or feel much much better on urso then you start to relax with the possible irritant of PBC (in my case as probably everyone on here will know by now (!), itching at night - the only thing that tells me I have this 'pretty bloody crap' thing as I call it) and start moving on with your life.

I personally cannot see the point in thinking about what could be as that might never be.

Enjoy your life now. Know not a consolation having PBC here but it does make you want to make the most of life even more.

[Hidden]

There is a free dvd on PBC that is available from Liver North if you aren't aware of it mabbott.

Here is the link for you. Also it is worth checking out their newsletters online. Click on the Publications on the left-hand side.

livernorth.org.uk/

[rosie456]

Hi there i was diagnosed too about your age, about 2 years after having my son. i was scared beyond words and like yourself could hardly function for worrying. but... you realise that after medications are started and you have time to think about this, life goes on :). it just takes a bit of getting used to mabbott. If they have caught this early and they most likely have at your age then thats a good thing. I too was frightened about lots of things, like would i see my boy grow up and all these feelings are completely natural. Keep your chin up love and try not to worry too much (easier said than done) but you can ask as many questions as you like here, bfn x

[mabbott in reply to rosie456]

Hi rosy. How old are u currently

[rosie456]

im 31 now mabbott

[GrittyReads]

Hi there,

Try not to panic, you will honestly help yourself by de-stressing, and being really good to yourself: spoil yourself. The last thing autoimmune conditions need is stress.

Everyone is right, most people have a full happy life and something else gets them well before the PBC does. And stay away from some of the crap online info sites, which are often outdated and only giving the worse scenario. Also, good to contact the PBC Foundation, who host this site. If you scroll to the top, there is a link to them on the purple bar, right hand end 'About Us'. that will take you to their website, where the info tells you most of what you need to know - you can get a bit more technical if you want to later. It was set up by Collette Thain, well over 12 years ago after she'd first been diagnosed with PBC, and couldn't find out any info. They have advisors you can phone, and will send you their info pack, and there will probably be someon living near you who runs a local support group.

Also, if you say whereabouts you are, roughly, there will probably be some people on here who live near you on, you may find someone who has the same consultant.

Finally, if you feel you can share it, what symptoms do you have, and what have the Drs/consultants said so far? We are all so different, and you may feel comfy talking more closely to someone who has a similar experience.

But take care of yourself, and for your babies as well as yourself: try to relax, de-stress, treat yourself.

Gritty xx.

PS there's lots you can do to help yourself too: food, exercise, vitamins and minerals, yoga ...

[JennerLayne]

Mabbot: You also might try visiting the PBCers.org site. Here is a link where you can connect with local US groups if there is one in your area. pbcers.org/support/local-gr... Additionally, there will be a conference in Las Vegas in July (it is my understanding it happens every 3-4 years) if you are interested. I am attending so that I connect in person with others (dxd spring '13) and learn more from the renowned speakers. pbcers.org/education/confer... If you would like to chat in person, feel free to message me, and I'll provide my number.

Too, I think you will quickly find that the group here is very helpful and supportive.