22 years old & Just diagnosed i have so many questions

[shannono22]

so im 22 years old and come to find out i have pbc, im scared to death iv read life expectancy is only 10 years with this disease can anyone fill me in?

[Neata]

Hi you need to contact the PBC foundation they will give you all of the information you could possibly want and introduce you to your local group,the info they give is invaluable best wishes Neata

[Neata]

Ps I was diagnosed10 years ago next month never head that before

[Val02]

Hi Its a big shock when you first get diagnosed and some of the information on the internet is quite dated and quite scary.

Neata is right the PBC Foundation is the place to go for all the information you need. Life expectancy varies alot with PBC and your consultant is best placed to tell you how the condition is progressing as we are all different. I was diagnosed 3 years ago but I have had the symptoms for over 10 years and Im still here and my liver is in good shape!

[Hidden]

Hello Shannono22.

I originally read it was usually women 40+ who developed PBC but obviously it is proving to be a bit wrong.

I would prob have been around 42 when I started with PBC apparently as the hospital consultant said in Feb 2011 that I had had it a few yrs. Thinking, sounds about right due to the bouts of tiredeness and fatigue. I'd prob still be walking around without knowing had I not developed the dreaded itch in 2010.

As I've been diagnosed now for almost 16mths I think as the weeks and months go by you put something like a life expectancy out of your mind, I have as otherwise you can't try to get on with living properly.

I think on a positive side, being young, you may well be more able to shrug things off and like me and others, you may not think more of it until you are older.

As others have said, life expectancy varies and I have read that it's more than likely we'll all die with something else as opposed to what we currently have.

Let us all know how you are getting along. x

[spoul]

hi there sorry to hear your news, i remember wheni was first told and even as a nurse i ahd never heard of it and was terrified. Sometimes the doctors and consultants aren't even very reassuring and i trolled the internet reading commente about 10 years that you mentioned. I was 39 when diagnosed but had it for before diagnosis, i held down a full time job for 13 years with amendments for my fatigue, my blood tests although abnormal are consistent. Just 18months ago i finally retired early on ill health but my conssultant says that my progression is slow and highly unlikely that i will die from it, more likely to die something else.......good news.So get as much infromation as you can but don't believe evrything you read especially from america!! stay strong as take care of yourself its not always as bad as you think xx

[kosy2 in reply to spoul]

Why do you question information from America?

[spoul in reply to kosy2]

hi sorry there no offence meant but the information i found on us websites scared me more than uk websites. Where as we treat more conservatively i got the impression that more transplants were performed sooner in the us and my consultant gave me much more sound advice

[kosy2 in reply to spoul]

No offence taken. Just looking for most up to date infomation.

[Poppygayle]

Hello i understand how you are feeling at the moment, i felt exactly the same when first diagnosed and like you looked for information on the internet and frightend my self with the information out there,alot of the information is dated .Contact the pbc foundation and they will send you an information pack that is very imformative and if you call them there is somebody to discuss your problems and fears with you.my consultant told me not to worry it is a very slow progress and you are more likely to die with it as from it. In time you will learn to pace your self with your symptoms (if you have any) and live with it .Keep positive and good luck .xx

[TracyLou]

Hi Shannon I was in quite a shock when I got diagnosed at 34. I am now 41 I do believe I had pbc long before my diagnoses as I suffered a lot from tiredness and couldn't tolerate alcohol. I have had 3 children in the meantime and my liver tests are stable.

The pbc foundation will put you a ease, they are vey supportive. Good Luck xx

[ValH]

Hi Shannon

I am sorry to hear your news at such a young age, so I would like to give you my experience of the disease. I was diagnosed with PBC and Coeliac disease at the same time, the coeliac disease made me feel so awful that when I got it under control I felt so well I put the PBC in the back of my mind somewhere, I didn't even tell people. I always go for regular check ups and I always take the the tablets that to this day I cannot spell. But because of the coeliac I eat a very healthy diet [the coeliac always lets me know if I don't] and I was a Dog walker for 9 year so I was always doing excercise and have always loved walking.I am not going to pretend the PBC had no effect but I have always found ways around the fatiguue.

What I am trying to say is, eat well, keep fit, be aware of the disease and keep in touch with the PBC foundation, and your consultant, but try not to dwell on it.

I am 59 this year and I was diagnosed nearly 18 years ago.

In two weeks time I am having a new hip and although I get more episodes of fatigue [which could be due to my age as well] I will find work that I will fit around it and you will have to sedate me to keep me out of my garden.

My consultant said to me all those years ago that a lot of people die with it rather than of it and many are never aware they had the disease. That stayed with me and helped me no end.

Good luck

[Hidden]

Hi Shannon -- i agree with everyone else here -- did they give you a staging? -- i was told by my specialist that each stage lasts About 10 yrs, more if you are otherwise healthy -- at age 22, if you are early stage, you should be fine for a good long time, especially if you keep your body otherwise in shape and fit -- we're here if you have more questions, -- or, if in the USA you can contact the american liver foundation --

[vicw]

I was diagnosed 25 years ago!

[SLWB]

Hey, I was young when They figure PBC started with me. The say around 25-26. I am 42 and have always had high AP levels, when they diagnosed me at 35 years old. They were 198, now they are 976. But it really doesn't mean anything, everyone is different. I have never responded to URSO, but I've noticed that many have. Get as much information as you can from organizations and you specialist, but remember, it is only a guideline and doesn't mean that is how you will be. I knew from the beginning that I would one day need a transplant, but many people live their whole life with PBC and never get to this stage of it.

[spoul]

in the uk our consultants don't get hung up on numbers in blood tests, they say they are irrelevant if you are otherwise well, surely you are stressing yourselves unnecessary. hop e this helps it seems there is a lot of misunderstanding out there

[tigger_7]

I hope you don't mind me saying but blood tests are very important. I'm in the UK and my consultant, who's written research papers on PBC, says that the blood tests are one important thing. They can tell a lot from them and he looks at mine closely. To him it didn't seem to matter that my liver has enlarged over the last year (as some people's livers do and they don't know why) as I thought it would. All that matters is that my blood results are getting better bit by bit and that is what he is concerned with. I have been told, blood tests results and your well being do not correlate, everyone reacts very differently. I just needed to say this only because this is what my consultant has told me many times. Thanks.

[spoul in reply to tigger_7]

hi there yes i guess all consultants have slightly different ideas like gp's do. Mine worked with the top liver specialist in the uk but obviously has different views. I find your statement slightly ambiguous, because i too have heard the bit about not correlating, and thats what i really meant, sorry if i've been misunderstood...thanks

[mojo62]

I know how you feel. i was just diagnosed last week. I am 47. Some of the things I have been reading elsewhere have terrified me to be honest. I am so glad to have found this site. I don't feel so alone now.

[michalax]

hi sorry to hear u have this i myself am only 38 and it was a ashock but was glad to finnaly get answers as they had me in hospital for 9 days and i felt perfectly fine. just had abnormal blood tests they ran loads and loads of tests on me .. my speciallist has giving me a life expectency think i would go mad if he did ( i want to live my life not be in fear of when and if i might die). was just told to take care of my liver change my diet and he will keep an eye on my blood work ( i have a blood test every month now) .

As they dont know excatly how pbc works as different in every person i`m just going to live my life and enjoy it . xx

take care of yourself xx

[LauraQ]

Hi, I'm 38 and was diagnoised in November 2011, 2 weeks after having my second child. I was so shocked when I met the consultant, was worried about the future and my children maybe growing up without a Mum. The information from the PBC Foundation has been a great help and I now don't feel the future is too bleak. I try not to worry too much about what will or will not happen, I get on with life and try not to think about it too much until my next consultant appointment (have one next week). PBC does affect people in so many different ways, I do hope the information from the PBC Foundation will help you and that you have support from friends/family. Take care. x

[Jtxx]

Hiya. I am 47 and was diagnosed last year. We all have the same but different symptoms which sounds odd but there is no black and white anwers with this condition which can be very frustrating at times. Just try and stay positive and healthy and listen to your body. Live your life to the fullest and hopefully you will not have to make too many adjustments to your life. Keep well. x

[PBCRobert Partner]

Hi, guys.

Firstly, Shannono22, welcome to the madhouse!!

I hope, by now, you have joined the PBC Foundation and have received your new members' pack. I imagine there may be many specific Qs you have and I would hope to be able to answer as many of them as possible.

Secondly, thanks to everyone who replied to this post. There are many great people here with experience in handling the condition, recovering from the shock of diagnosis, etc.

On the interweb, there is as much disinformation as there is information. PBC doesn't happen in stages, for a start. Cirrhosis of the liver can be measured, broadly, in stages but even that is of limited use in the real world. Staging is primarily helpful for putting together cohorts in research, it would seem...

I, personally, question most of the information I've been referred to on American sites. Ultimately, the source is all important: how informed they are, who peer reviews their information, their background, any agenda, etc...

So, the answers (or most of them) are there: just be careful whom you ask.

:~)

[kosy2 in reply to PBCRobert]

Why do you question American sites? What information? What sites?

[melisab]

My husband is an ER nurse and met a 78 year old woman that has had PBC for 18 years. She said she has never had a problem with it! She takes her Urso everyday and lives a normal life. I too was just diagnosed with PBC and was terrified by the things I have read on the internet! I was lucky to have found a liver specialist here in Texas. I have my biopsy scheduled in June but the doctor told me not to count my days and that my body will most likely die before my liver does!! She said to just stay at a healthy weight, eat right and exercise! I never would have know that I have PBC if it wasn't for a routine blood test. Every one is different but just stay positive and live each day as if it were your last!! We take life for granted and forget just how special it is!! Blessings!!

[milo2002]

I have just been diagnosed 6 months ago aged 49 ,I keep thinking my life is over and have been so depressed . These blogs have helped me .

[SNOOZY in reply to milo2002]

Hey do not let this get you down. Yes its hard but so is life. when i feel like crap and want to wollow in my misery i have a cry ,get it out of my system and then shake it off sayin to myself "its NOT Cancer" im still here after 10 years and yes there have been ups and downs BUT Im still here. i see the kids in the hospital that may never go home and have not had a chance to really live and i feel blessed coz i get to see my kids grow up and the sun rise each day, which is more than some people get. so have the cry that we all need to have every now and then and then shake it off and say ITS NOT CANCER coz tthat helps me ...try it ..who knows it may help.Remember most people on this site have been battling for years and we are still here. stay strong and smile

[Cristina_Romania]

I can say I have met quite a few PBCers (at the PBC Foundationb's meeting) that havfe had this condition for more than 20 years. Active people, who take care of families, grandchildren, sometimes even part time or full time jobs, have lots of hobbies...

So do not despair. Talk to people who know and are experienced, as Robert also put it. And rememeb - in EVERY - EVERY- conditoin in this world, PBC included, a positive mental attitude influences Tremendously your body. So keep it up :).

[jackie9116]

I was reffered to a specialist after taking some Tramadol tablets that made me itch like crazy. I too was shocked when I was told I had abnormal AMA. However they are not sure and are giving me another 6 months to see how I go on. I do get a little tired occasionally but after food it goes away. If I eat fatty things I can get a little bit of itching but nothing too bad. I am try to stay positive but find it difficult. I go back to see the specialist in June so will find out more then. I might have PBC but it will not have me is what I say. I eat lots of fruit and veg and exercise works wonders. I cycle 10k at the gym and run 3K on a regular basis. This with out doubt helps heaps.

[EKHM]

Hi, i too was very shocked when i found out i had PBC, i had never heard of it, for several months was wary of each and every twinge,but gradually learned to get my life back. I had blood tests done after being unwell, and thats when it was found, blood tests showed it to be very severe, but biopsy showed it to be very mild ? Liver looked normal, ater a second biopsy, it was found i also have AIH, the two combined are called the crossover syndrome anyone else have both ? i take my urso daily, plus immuno suppressives and am fine most of the time, but do have spells where the fatigue takes over for a few weeks, then i am ok again.

[DoreenD]

Hi, I was diagnosed with PBC 1988 (nearly 28 years ago) and still doing ok, when I was diagnosed there was no Urso and was on predisolone for 5 years and my outlook was not good as the Dr's said I may need a transplant within 10 years if I lasted that long. In 1993 I was in a 2 year trial here in Australia for Urso and the rest is history, I did not know anyone else with PBC for 10 years, I was on my own. I am 72 now and in stage 4 but still get out and about ....I do volunteer work and play carpet bowls and movies outing with friends. So you still have a life with PBC,,,,,,,,or despite of PBC ..... with PBC we all travel a different paths as not one of us is the same as some have other auto immune diseases to contend with as I have as well as other health issues. I always say to myself there is always someone, somewhere in the world worse off than me. Enjoy your life as long as you take your Urso or whatever meds your Dr's have you on you will be ok. Hugs Doreen

[Jlruggie]

No living only 10 years isn't true, you can live longer than 10 years asymptomatic if you take urso and take care of your body