PBC Foundation
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Hey to All! I've joined the crowd, for better or for worse.

Hey to All!  I've joined the crowd, for better or for worse.

Hey everyone!

This is not a momentous occaision, but, i just have found out that I have PBC after a biopsy. I'm a 64 year-old woman.

Over the years, I've always been a worrier, but, this time, it's come true. I'm having a hard time wrapping myself around this diagnosis.

I have read so much about this disease that I am in danger of believing all the bad stuff. One moment I think it's a death sentence, the other moment I'm thinking it's like high blood pressure-- control it and it won't kill you.

I hate being so worried. I did this way back after my second child was born, and it nearly destroyed me. I won't do it again. Fear paralyzes me.

I had slightly high ALP for a while, then numbers went down. I had the ama and ana. Finally, after a year and a half, the doctor suggested a biopsy which I had to give me the diagnosis. I have no symptoms what so ever. I could imagine I had fatigue, itch, and aches and pains from it, but, I've always had those things off and on through life.

I don't want this to define me, and I don't want to think about it constantly. Can I live with this well? Doctor says yes.. and even said I can live a normal life. He gave me no restrictions, and no rules and regulations. I feel good that he's aware of the horror this causes, and wants to minimize it so we can relax. He's an excellent, compassionate doctor who himself is partially paralyzed from a car accident.

So, I guess what I'm looking for here is support and hope. I'm a vigorous 64 year old that acts like young girl most of the time. I work in a nursery and garden center doing a lot of strenuous work. I don't want to lose that vitality or spirit..

It's a pleasure to meet you all. From the NJ Shore,

Patricia Dumas

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Hi Patricia,

I was diagnosed in 2011 and I finally accepted it about a few months ago. I don't live in the shadow of the condition anymore and even though I have always had a positive outlook on it all I still used to have my down days when it all felt bleak and I asked "why me". But I don't feel like that anymore. I try to eat well, remove as many toxins from my diet/life. I don't drink anymore and am very aware of what I am putting into my body. I do positive visualising and I never talk about symptoms or the future. I am trying to live life to the full with my family and bringing up our 3 beautiful children. I am in so many ways the happiest I've been in my life and feel lucky I was diagnosed so early so I can make positive changes to the way I live. I have been juicing for 2 years and I also find exercising (jog, twice a week and 10 mins of sit ups/lunges etc every day) has had a hug impact on my positive state of mind too. Compared to how I felt mentally 2/3 years ago is pretty amazing so hang in there.

Much love from Jersey (in the Channel Islands, England! :-) Melly xxx

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Thanks Melly... from the first Jersey!

Sounds like you've got it all in hand. I will get there, I know. My kids are grownup and I'm a grandma. So, thinking this is the end gets to me. But, such is life. I'm happy to have a doctor who is very laid back and puts no pressure on me.

Your words about acceptance are very helpful. And, I thank you. Love back, from the NJ Shore, USA.

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Hi, Pat,

Me again. Hadn't realized that you were so recently diagnosed. There's nothing quite like being told you have a rare, incurable liver disease.

After you work through the 5 stages of loss and get to acceptance, it won't be so bad (or so I tell myself). Am flipping between denial, depression and anger. Currently, anger has the reins.

Am 58, in Ohio (we're practically neighbors), have two grandchildren and PBC.

Sending best wishes and love from Ohio.

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Thanks for the good thoughts, Kinda!

We will get on with life. We have to, right? Just trying to get over the initial shock as to 'what the hell is PBC???' Who'd a thunk? I thought I'd get lung cancer from smoking first. My son says I'm lucky. Not very compassionate, but true, I suppose. Thanks again for writing. xoxo from Jersey

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Hi,

I was diagnosed 10 years ago around my 40th birthday! Symptom free at the time and all they were testing for was why I was anaemic. When the GP told me the outcome he said " I have only ever had one other patient with PBC in all my years practicing" he didn't know at the time that it was my mum he was referring to.

I have struggled with the diagnosis (along with coeliacs disease) and like you, I see this as a death sentence some times.

To be honest, I wrote myself off and haven't looked after myself very well at all I'm sorry to say.

I have now turned a corner and I hope it's not too late. I'm getting on with my life to the best of my ability, everything in moderation.

The fatigue is the most debilitating problem and I don't have the itch thankfully.

Stay positive and crack on with whatever you want to do!

Good luck everyone :-)

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Thanks, Foundry9. My mom could of very well had this as well.. But never knew. She drank heartily as well, but died of Alzheimers. I'm sure she would of freaked had she known.. we are the freaking out type! :-). It's good to get feedback from you and know you've been living with this for 10 years. As for the fatigue, I have always felt groggy and crummy in the morning, so I don't know if it's because of pbc or not.

I admire you for turning the corner on 'writing yourself off'. I tend to do the same thing. But, like I say, would we feel any better if we could say we had a chronic 'bone' disease instead of a liver disease? Probably! It's the LIVER word that gets me. I gotta get over that.

Be well, and I thank you heartily for the support! Pat

The NJ SHORE

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Hi Patricia,

I just recently moved from central NJ to California, and was just diagnosed with PBC last month. Still going through a lot of tests to figured out some other associated issues that I have along with the PBC. I just ( last week) turned 37 and I am very healthy. I'm in great shaped, I eat very well, I don't smoke and I've never been much of a drinker and yet still somehow ended up with a liver disease. From everything my dr has told me and all the research I've done most people die with this disease not because of it. It is definitely hard to stay positive, especially when you're just finding out about it, I've been through so e very dark and depressing days/weeks this past month but when you've got a great dr telling you he's not worried about things as they stand now and everyone one here telling their stories about living very active normal lives for the most part it's hard to stay down. It takes way to much energy to stress and worry all the time. It sounds like you have a very engaging and physical job which keeps you active and moving and is great for the immune system, plus how you stay depressed when working at a nursery around plants and flowers all day? Enjoy your life, your kids and grand kids, and try not to let this get you down.

All the best,

Erica

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Thankyou kindly Erica! It's good to know that positive folks are out there. You're so YOUNG! I remember freaking out at other things at the age of 37, waiting for the other shoe to drop, and it never did.. until now. Yes... I got the diagnoses from the liver biopsy and then started immediately to stress and feel tired. Thankfully, I am aware of what a bad case of nerves can do to a body since I had post partum depression years ago. I now understand. Thanks for everything. Looking forward to talking more. California is a great place to garden!!.. Pat

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Hello PatinJersey.

PBC diagnose does take some getting your head around as I expect lots of other conditions out there can when one is informed that there is 'no cure' (as yet).

I had a slightly heads up back in 2010 as I started reading up on the liver once the GP informed me that my problem was liver related and not bone (you can have abnormal liver function tests (LFTs) with bone conditions too). I stumbled across PBC and wsn't sure if that is what I had. I never mentioned it to the GP nor the hospital consultant but did when the consultant said he was going to do some antibody tests. I then said was one for PBC so he said yes and was a bit surprised I had heard of it. Took 9mths from seeing GP to diagnosis via antibodies test.

I never informed my husband of just over a year what PBC COULD lead to as he hadn't taken it overly-serious. The consultant informed him of more on my return after the GP informed me I had PBC and he was to prescribe urso as the consultant had requested he do so.

Although at the time the diagnosis didn't come as a surprise it came as a bit of a blow to me as I hoped I hadn't got anything much wrong with me at the time (I presented to GP with itching, was fatigued at the time), that it would just all go away.

It was tough in the early days as you wonder how you'll be months and then a year down the line, your whole life can pass in front of you. For me I never took life for granted as before I reached 30 I was a widow with 2 young children and my mother had died young before I had two children.

For me I found it quite heartbreaking as I had met up with a man I had contacted via writing 12 years prior and we finally met up iln 2008 and married in 2009 and then bang, within our first year of marriage I was itching and then diagnosed with PBC. That to me was quite a blow.

As time moves on and you take the urso (if you do - if you aren't, you will continue to be monitored for any changes) you start to feel that bit bolder. I muddled through the first year on urso and my bloods did start to improve. Then more time moves on and you take a hold and as you start to re-live life again and then get to the next year and tell yourself you are still here. I have reached over 3 years now since diagnosis but it has been 4yrs now since I started with the itch.

I know myself I feel much better, my itching is still an irritant but it is confined to night, has been since not long after starting on urso. I lost the fatigue quite some time ago now and feel quite normal. You'd not know looking at me I had this PBC tho' to an expert there is the tell-tale sign with my skin, it remains a bit tanned after the summer (I am in the UK).

Some days I feel I am not doing well but I think that is expected. I switch off to what could be ahead of me with PBC as I don't want to know. I shall deal with these things as and when, no use really worrying about it now, to me that would be wasting valuable time.

I see it these days as a chance to enjoy life to the full and hopefully I shall continue to live my life for many many years. I have recently turned 50.

I was never informed to change diet, etc when I was diagnosed as I did ask. I think some things are common sense and I do try to eat as healthily as I did before but I scrutinise certain things as I dont' have artificial sweeteners, MSG or other nasties that can be used in foods. Alcohol I think speaks for itself, I was never a big drinker prior to 2010 but I chose after my first abnormal LFT to totally abstain. It doesn't bother me. The odd glass of something every now and then wouldn't hurt I'm sure but it's personal choice.

Crack on with life PatinJersey, keep up your garden centre work and get the most out of it. I somehow think that with PBC we will all make more out of our lives now than if we didn't have it.

Best Wishes.

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Thanks, Peridot...

I read your story months ago while lurking and digging for information on this 'weirdo' disease months ago. You have certainly done a great job in your life raising your kids. And you're not letting pbc get you down. I admire that.

I suppose I will wrap my head around this eventually. The idea of a chronic disease being in the liver instead of a more acceptable place like the bones, muscles (RA, etc) is hard to get used to. I guess this disease isn't sexy enough or acceptable enough because no one has ever heard of the damn thing! :-)

I do have a bad habit of smoking. Who can give it up now after this bombshell? But, I'm trying to be better eating and not smoking. Trying.

I thank you for all your encouragement. We will carry on here, won't we? Thanks for being here. Pat

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Hi Patricia/PatinJersey,

Welcome to the forum. Its early days, what you are feeling is natural. Its such a confusing, frightening, emotional time for you when you are first diagnosed and its so easy to spiral into deep depression.

I was diagnosed at age 50 in 2011 and went through a rollercoaster of emotions much as has already been stated by others. Unfortunately for me the registrar who broke the news to me that I had PBC was not at all compassionate or understanding like your Doctor.

I had been suffering for around 12 years prior to diagnosis of PBC with severe joint, bone and muscle pain. No one could tell me for sure why I had suddenly; 10 weeks after giving birth to my youngest son, developed these crippling pains. I couldn't even pick my baby up, I had to scoop him into my arms. The only way I could get up and down the stairs was either on my bottom, hands and knees or carried by my husband. Initially they thought I may have had viral arthritis and referred me to a rheumatologist. The referral was a complete waste of time, firstly it took 3 long years for the referral appointment to come through - unfortunately one of the draw backs of the NHS - and then during the 15 minutes consultation the specialist said he did not know why I was experiencing these symptoms, said I did not have arthritis but suggested I try and loose some weight - at 5ft 6in and 11 stone I was hardly obese and when the symptoms first happened I was around 9 stone. I lost all faith in the medical profession after that and self medicated until 2009 when I could not put up with the pain any more. My GP referred me to rheumatology for a 2nd time. It was as a result of investigations made during this referral that it was confirmed I had osteoporosis of the spine and osteoarthritis in the hands, feet, knees and elbows. Something also showed up in my bloods which resulted in a referral to a gastroenterologist.

I went along to my appointment with the gastro alone, believing the referral to them was going to be a mistake, my thoughts being 'I haven't got anything wrong with my stomach'. It was at my first meeting with the gastro registrar that he told me that the results of the blood tests carried out by rheumatologist showed I had PBC. I suppose like most of us I had never heard of PBC and when I asked him what it was. He said I had a chronic liver disease and that I would need a liver biopsy to confirm the extent of the liver damage. I asked for more information.. like had I done anything wrong for this to happen and what did it mean for me exactly. He was so matter of fact about the way he informed me, it was as if this was news I was given on a daily basis, he said it was an autoimmune condition and that I could have 3 years to live..... I was absolutely floored!! He handed me a Doctors PBC information leaflet because he didn't have a Patient PBC leaflet, suggested I read up about it on the internet and that I would receive the appointment for the liver biopsy in the post. I don't know how I made it back to the car or how I managed to drive myself home. Like you I immediately went on the internet, big mistake, there is so much incorrect and out of date information out there, so try and keep to reputable sites and forums like this. The information I found frightened me to death, all I could think about was I would not see my children grow up, get married or have children of their own. I was a write off and was going to die!!!!

The next few months went by in a blur. I went through a rollercoaster of emotions and spiralled in and out of depression. I shut myself away, if I didn't think, read or talk about PBC it would go away.

I saw the Gastro Consultant for the results of the biopsy not the registrar and what a difference he was absolutely brilliant. I took my sister along with me to act as my ears and speak for me because I was a gibbering wreck and couldn't stop crying and she explained to him what had happened previously. He was so lovely, and explained everything to me. He reassured me that having PBC did not mean I had a death sentence and that there was no reason why I should not go on to lead as normal a life as any else - even though I had PBC my liver may never develop cirrhosis but if it did there was always the possibility of transplant - and prescribed me with URSO which would slow down the progression of the disease.

I discovered this forum in June 2011 - 5 months after diagnosis - after plucking up the courage to contact the PBC Foundation here in the UK......I have not looked back since, it has been an absolute godsend to me...... Everyone is so understanding and helpful and you realise you are not alone with this disease. We are all reading from the same page - so to speak - we are all living with PBC and therefore understand what we are going through.

You say you have no symptoms. Some people have many symptoms and others have none - asymptomatic - you're one of the lucky ones and that is excellent news for you. Others have an overlap with one or more other autoimmune conditions. Just because you have been diagnosed with PBC it doesn't mean that all of a sudden you have to take on a 'label', act in a certain way or change your life in any way. You are a fit, active and happily busy 64 year old lady, not many people of the same age.... PBC or not.... can claim that, so good for you, keep doing what you are for as long as you want to and are physically able to.

It probably took me a good year to come to terms with my diagnosis but these days I am far more positive about life and can honestly say I hardly ever think about my PBC. I have had to adjust the way I do things. Reduced my hours at work, I work part time - clerical/administration. I am a lot slower getting things down these days, fatigue and pain being a big issue for me. If it takes me 2/3 days to do my housework.....so what!...... I don't beat myself up about it. I get good days and bad but the good days far outweigh the bad..... so life is good. .....and something which a few years ago I thought I would not be around to see....the birth of my first grandchild in October, I can't wait for that and I am so excited.

I strongly believe that what is the point of worrying about something that may never happen. Be happy, be positive, forget you have PBC and enjoy your life to the full.

Best Wishes from Cheryl in rainy Wales UK

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Thank you Cheryl in Wales! What a beauty of a country you live in! 'How Green was My Valley"! I've been through many days of fear and panic, but, since being a freaking hypochondriac after my daughter was born, I learned to cope with aches and pains. I may or may not have symptoms, but, I feel the same as ever physically-- accepting the pains of getting older.

I still wince to myself when I remember that I have this condition.

How do you get over the feeling like you are gonna die early? That's my fear. I like living a carefree life and PBC doesn't fit into it! :-)

Thanks for the wonderful greeting and words of encouragement. I'll be looking forward to reading more of your posts. Lots of love from the NJ Shore, Pat

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Hi again PatinJersey,

I agree Wales is a beautiful country and I love living here. I think if I ever had to move anywhere else it would be to Cornwall another beautiful part of the UK. I have many wonderful memories over the years of holidaying there as a child and later as an adult with my own children.

If only it was as easy to learn to cope with worry as it was learning to cope with living with pain aye. My mother has been a worrier all her life unfortunately the older she gets the worse she seems to worry, no matter what I say or do to try and alleviate her worries.

You ask how do you get over the feeling of dying early....you don't..... but you learn to cope and put your feelings into context. I took encouragement from reading the stories of others who have had PBC for in excess of 20/25 years and took the decision that I would not let PBC ruin the rest of my life, not without a fight anyway. I have learned to put PBC to the back of my mind, I would be lying if I said it didn't rear its ugly head every now and again, I stop and take a deep breath and think what else may be causing the pain/discomfort before automatically putting it down to PBC. The question of my mortality is not an issue now as it never enters my thoughts. If I had taken the words of the gastro registrar as law, that I could have 3 years to live, my 3 years would have been up now. I am determined to take each and every day as it comes and live it to the fullest.

The first 6 months were a living nightmare. Every niggle or pain I experienced I convinced myself that I was getting worse. When I read of other peoples symptoms I began imagining I had them too....I became a raving hypochondriac.... totally immersed in myself.... ignoring those around me. I had a follow up appointment with the gastro consultant 6 months after diagnosis which showed my blood results had improved..... I found this forum which made me realise I was not the only one....After a year my bloods were almost at normal range. It was in black and white that tests were showing I was getting better so why was I still feeling rubbish. I took a long hard look at myself, gave myself a good kick up the behind and began thinking rationally. I thought back to how I had been before diagnosis. Other than being in pain I did not have any bad in my world. I had self medicated for years and coped so why should it be any different now. If I had not had blood tests taken by the rheumatologist I would never have known I had PBC and would have been blissfully unaware I had a problem and carried on with my life as before. However, in one way I must be grateful for the PBC diagnosis because without that I would not have been prescribed URSO which for me was a positive move in that it has helped to slow down the progression of the disease helping to return my blood readings to within normal range...which they still are.

In one of your other replies you state you are considering stopping work. You sounded as if you really enjoyed your job in the nursery garden centre. Only you can make the decision but what I would say is think long and hard about it, don't make any hasty decisions, be sure its for the right reasons because you don't want to regret it further down the line. Is finishing work something you really want to do, need to do or is it because you are questioning your mortality and thinking you should do it now before its too late. I recently reduced my working week - week 1 of 3 x 7 hour days and week 2 of 2 x 8 hour days, I reduced to 2 x 6 hour days each week. My reason for reducing my hours was purely because I was struggling so much with the fatigue by the end of my shifts I felt unsafe driving home. I was finding I was taking days to recover properly and it was affecting family life. If I had not had the opportunity to reduce my hours it may have ended up with me having no option but to give up my job as I do not know how much longer I could have coped, the way I was feeling.

I hope you will soon be feeling a lot better . Love and Best wishes from Cheryl

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Patricia - glad you joined. I stay at my parents beach house in Avalon, NJ several weeks a year. It's beautiful! I have Stage 4 PBC. I was diagnosed 2 years ago and while I have some symptoms I still enjoy a very active life. The problem is that once you find out it tends take a hold of your mind. If you let it go and just follow your doctors suggestions you can live a very fulfilling life!

Callye

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Callye, thanks for the welcome. It IS appreciated. I'm glad to hear that stage 4 is doing good by you. Everything sounds scary about this disease. Not a sexy disease like RA, or Diabetes!! Everyone thinks you're a drunk once you mention the C word!!The thing that makes me feel a little better about this thing is the doctor didn't shake his fist and tell me to "do this or do that"! That subtelty is very reassuring. Looking forward to your posts and outlook! Thanks, and love, Pat at the Jersey Shore. PS: Avalon is beautiful. I've had my fill of the Jersey Shore, and fell in love with Cape Cod. That's where I go every year.

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You're right about everyone automatically thinking it's from drinking. My family even said "you don't drink that much", but once they went online and understood it better they get it.

Good Luck in Cape Cod!

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I nearly s*** myself when biopsy said Stage 2, I've since been told not to take too much notice of the 'staging' as it can be years Inbetween.

Yes Pat, the LIVER word is like a dirty word isn't it, very scary! Probably because it's this huge chemical factory that keeps us ticking over? Also associated with what people assume as alcoholics disease!

I don't drink and never really have.

My PBC is genetic, my mum had it and unfortunately it got her in the end. That's probably why I'm so paranoid about the whole thing? The last thing my mum said to me was "Be Happy and enjoy your life"

When I told my consultant and counsellor about my fears of dying from PBC they both said the same thing "we will always want more" and it's true, no matter what we would be diagnosed with, it would never seem fair, no matter what age fate decides to step in, we will always want that little bit extra, and rightly so.

It's easy to say let's grab life by the balls, but we should try to and everyday to do something that makes you feel good :-)

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Ha Ha Foundry! I am hoping the recent nervous sh**ts will make me lose tons of weight! I am thinking of checking into my mothers old medical records to see what she had. She died of Alzheimers, but, I never heard anything about high liver numbers. Could of very well be something there.

I asked my doctor should I write a will or something (with a wink in my voice) and he said hell no! So, I believe we can live with this like we live with preventing stroke from blood pressure pills, or coronary artery disease from Statins. Or preventing heart disease by taking medication. Maybe it's the same as taking insulin for diabetes. But, because it's the Liver and Cihhrosis word, we get all crazy.

Thanks for your wonderful outlook! My doctor said it's nothing I did, it's in my genetic makeup. Damn them! :-) I am thinking of stopping work and having myself a ball up in Cape Cod.

Much love from the Jersey shore, Pat

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Hey Pat! We could have been seperated at birth! Lol! I am one of those lifelong worriers-other shoe dropping- anxiety mongers. I have only just been diagnosed myself. My doctor told me that I probably have had this a long time. I knew my mom had this disease but even though it may have lengthened my life to know I had this at least 10 years ago and started treatment I am glad I didnt know. I am in a different place now in my life and I couldnt have handled it then. Also, it would have killed my mom knowing i more than likely inherited it from her. I know in my bones I did. We are so alike that my own father couldnt tell is apart on the phone

I am at stage 2 but have no idea how long. At this point it doesnt matter. I still have moments where i am scared. I am still being tested for overlapping diseases and scared I may also have lupus. That scares me more than pbc. I am nervous about the urso too since i already have acid reflux. But i soldier on and know that God is with me. This place is great. So greetings from another yank. Im in Indiana

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Ah, yeah, Notor...Nice to meet ya, fellow worrier!! :-)

I think it is prob genetic, but my mom died of Alzheimers. She could of very well had this. But, she didn't know. It would of made her more of a nervous wreck if she did. My doctor is very blase about this, and I'm glad he is. Because if he's not worried (and he isn't in the least.. told me at stage 2 that this can go on for decades) I'm not worried. Take care of it just like I take care of high blood pressure and high cholesterol. And think of my nephew who was diagnosed with diabetes at 11 years old. He's handling it well.

But now, a funny thing happened on the way to PBC. Being a worrier all my life, I've suddently stopped. Cause I know what I have, and it can be handled. So.. It's strange.

Stage 2 is early. We can live a very long time. That's what I'm convinced of.

Aches and pains? Pfft!! Everything is not because of pbc. I've had all the aches and pains and itching, tired-ness all through my adult life. I know it's not the disease.

Funny thing, right? So I go on, and act as normal.

Much love, Pat ps: don't worry!

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I was diagnosed with AIH/PBC overlap in early February of this year. Thanks to all of you for your upbeat comments and information. As you know, there is very little information on this disease/diseases out there, and much of it seems somewhat pessimistic. I am now assuming that some of what I read has to do with untreated cases.

I'm currently being treated only for the AIH with prednisone and Cellcept, and my enzymes have begun to go down. I'm wondering if I will be put on Urso once the AIH is under control. Since my appointment with my specialist has been moved from August until December, it will be a while until I get an answer.

I'm a retired high school teacher from the Chicago area, and it's very interesting to read the stories from others around the country/world.

Again, many thanks to you all!

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It's all a surprise, isn't it, Befriend? A lot to learn to live with. I am trying hard to wrap myself around the pbc diagnosis. I'm getting there, and not freaking out like I thought I would when a disease came my way.

But there is a LOT of positive info out there if you look in the right places. Def NOT a death sentence. I just am learning to get over the icky feeling of having something wrong like this. It's hard. But, a good doctor is everything. Mine is totally not worried. He's as loose as a goose. And, that gives me hope. All the best to you... Pat

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Hi Patricia . I was diagnosed I. Feb. of this year. I am 65 and I also have no symptoms right now. I work full time at an entertainment company and I love what I do. I am not willing to give in to PBC and will take my meds. Ursodiol 350 two times a day and watch what I eat, and pray hard. I wish you luck.

Ruth

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That's the spirit, 2006! I try to watch what I eat, but it doesn't work most of the time! Just taking the pills, have no symptoms, and with a positive attitude, I hope never to have them! Good luck.!

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