Slow action from long term Docs for a number of years re elevated LFT's until decided to change and then shock action right away, but at least some action. Within weeks managed to have Gastroenterologist appointment today. Don't think he handled my 1st appointment well though! Not sure if he felt worse for me or me for myself? Bit freaked out, told me all the bad things, so, in some shock stage mode. Wish I didn't know, want to b alone, not cook for my girls, give up work, end my love life, just disappear. No symptoms yet? Ok, got that out of my system. So, more bloods and seems soon to be on Meds, plus referral to Hepatologist, not current specialist field I was told. What I want to know, is how do people cope, day by day. Can you forget it and just visit docs all the time. Make adjustments to your life, food, exercise etc and b happy. Wait forever nervously, like being in limbo, there doesn't seem to be much support, except here. Any positive feedback on dealing with pbc appreciated. Especially getting on top of the nerves. I am practical, it is what it is!
PBC downunder, South Australia here. - PBC Foundation
PBC downunder, South Australia here.
My first reaction was total shock and a feeling of isolation and fear. My daughter wished I'd never been told as my attitude was far from positive. Doctors know so little about the disease.......there are some GP's I've had to explain it to.
This was over 12 years ago. I'm still not on any medication and I've been told nothing about Ama's or liver profiles only that mine contains an enzyme only found in patients with PBC.
I have yearly blood tests and four yearly ultra sounds and endoscopies. I've learnt NOT to be scared and to live life to the full as before. After all I've not changed and the profiles are just numbers after all. I'm not being flippant about this but refuse to be subdued because of it.
Remember that this does not prevent us from getting other illnesses and we cannot blame everything on PBC.
Hope this helps.
sincerely
Linda Susan
Hi
A bit like Lindasusan... Found out 3/4 years ago, although it was a shock to know I had PBC, my brother had recently had a liver transplant as he suffers from PSC. So I knew end stage well I can tell you.... However that is not me, my blood counts have stabilised with urso and my scans show no damage to liver, blood vessels or bile ducts. I feel more likely to die with PBC than from PBC.
I currently probably suffer more problems from being peri menopausal and stressed with a teenage son and elderly disabled relatives. I try to eat well and exercise by walking and doing weight bearing exercises.
You will feel more in control soon and it will just be something you have rather than controlling your life.
Take care of yourself and your girls
Lou
I was diagnosed about 3 months ago and was initially very worried by what I was reading on the internet. For me, getting informed, asking my doctor lots of questions, this website have helped tremendously. I also have an aunt who was diagnosed over 30 years ago and is now 82 and still doing very well - most of her issues are unrelated to PBC.
I am fortunate that my bloodwork indicates I am at an early stage. I have recently started on Urso. I do not have itching but have very sore joints - especially feet and hips. I have decided to make a conscious effort to move more every day and to be happy that this isn't worse than it is.
My doctor told me that this is a treatable disease and that most live to normal life expectancy. Transplant is no longer the norm and is somewhat rare.
I am very grateful I wasn't given a diagnosis with a much worse prognosis!!!
Having said that, I do miss my glass of wine with dinner!!!!
Hello Luby48.
I was diagnosed back in Dec 2010 when I was aged 46. I had stumbled across PBC months prior and never said anything to the doctors. I just hoped that I didn't have anything and that it turned out just to be some temporary glitch. I was wrong.
I knew prior to seeing my GP that I had PBC as when his receptionist rang to ask me to go in for some meds as he had heard from the hospital doctor, I asked what meds this was to be and was informed urso.
The shock in a way for me was that prior to 2010 I rarely went to the GP and always thought I was in exceptionally good shape.
I think you need time to take it all in and then go with how the urso is performing for you. I got pretty good results following taking urso Dec 2010.
You do start to think of certain things following the diagnose but at the end of the day you have to resolve yourself to realising that there is currently no cure and that you just have to get by from day-to-day, month-to-month and then year-to-year with it. I had itching and fatigue back early 2010, reason I visited GP. I thought stress, etc. The fatigue left me sometime during 2011 but I still have that annoying itch (night time) but on the whole I am doing well. MY LFTs slowed down in decreasing about 18mths after starting the urso but they are much much better than they originally were. I go from day-to-day how I feel and that will do for me.
I was never informed to change anything dietary. Alcohol speaks for itself I think. I was never much of a drinker prior to PBC and doesn't bother me that I haven't bothered having a drink since my first abnormal LFT early 2010. I think it pays to eat well as it gives you a better feeling and you do feel fitter. I have continued eating as always and to me quality outweighs quantity. I try to keep active due to the fact if I sit about too long in the day I start feeling the prickles of the itch, find it better when on the go.
Once a year is reached following diagnose then you do start to feel that much better. I've been diagnosed now 3 and 1/2 yr and I'm probably much better than I was back in 2010 just prior.
My motto is to enjoy life now as we never know what is round the corner. I would rather enjoy life and make happy memories than let PBC rule my life. I'm stuck with this PBC and I don't know how it will go so the here and now is important.
You will probably hear about stages of PBC but quite frankly I have no interest in them whatsoever. A biopsy tends to give one this so-called 'grade' but for me, I'd rather not know as for me it is something less to bother about.
Just got diagnosed myself. Here in US, Hepatologist picked It up right away. I am really angry; at who, I don't know.
Waiting to see if I go on urso. I am 67, female of course. Must have had it for a while but didn't have any symptoms other than high LFTs .
Just give yourself time and take care of yourself first.
Eat right and try to walk or do something for yourself at least half hour a day.
I have a great husband and older kids, so have plenty of time to take care of myself.
Hi all, Thank you so much, I somewhat feel emotionally better, 'only time will tell'. In the early hours yesterday I reviewed my life, how did I get here? Amazing how many, many contributing factors affect our lives to be given this chronic illness, (think that sounds better), but am determined to move forward as best as I can. Reading all your comments has given me strength, I have a voice and Doctors will be hearing it. The support from you all has been more valuable that any I have received thus far. So, I did cook for my girls, got on my exercise bike, fixed my face, will get some sunshine today and catch up with that special fella. Thanking you, mwah!
Hi Luby48. I am a fellow Aussie from brisbane and was diagnoised 2012' excuse any typos as have never posted before. I was as shocked as you at the start but I just take the urso & keep my doc's Appts and keep moving. I get fatigued but I have learned to pull back. I work full time, and exercise regularly, I think it could be worse. Search the email for liver north as they can send a DVD for a small fee- a patients guide to pbc it's very good. The support of this site is fantastic so know that you are never alone and we all fight PBC with you. A lot of research is happening and on day they will find a way to turn off the switch that keeps pbc going.
You go girl. None of us, with or without an illness know how long our time is on this earth. Make the most of every single day, put the PBC on a shelf in the back of your mind and only worry about it when you have to.
Hi Ladyliver, we're practically neighbours. Heading Far Nth Qld, next week, ummm with that special fella. Nomorepies is right, worry when it happens. So, I remember again those words a dear friend, who recently passed from skin cancer told me, same as yours. 'Get up every morning, and keep moving'. Mwa everyone.
I'm giving my doctor a new guideline for our appointments. Being a doctor is a tough job, and some pass off their doom and gloom to the patient. Key word their!!!
1. We get 5 minutes of time talking about numbers (I know enough about it now)
2. Then we talk about things that will make me better
3. No blood pressure readings (But I will give her my results from the past x days)
4. Last 5 minutes we will talk about fun things or tell jokes
5. They already know that they need to send me a copy of the results.
I really like my doctor and feel that she is very good at her job. But when my blood pressure is already high from being there, we don't need to make it worse.
PBC messes with the liver, not everything else. There is no guarantee of tomorrow, so have some fun today. My summer is booked with travel, visiting friends and playing with my dog. There is a lot of work in between all that fun. Live to work (NOT ANYMORE), work so I can play (YES PLEASE)
I've been thinking. Guilty! As you are all probably well aware of and I also forgot to say thank you, for DVD details to Ladyliver. Thank you. I have appointment in a few days, start of MEDS, tba and ranrace you have given me just what I need. Take control and not let the Docs bring me down, I like your guidelines and will apply as well. Life has it's own challenges without being enemies with the medical association, even though it is very difficult not to rely on them, this time it's better not too, unless it becomes necessary. Thank you again.
Hi Luby48
I have not long joined this site, and I just saw your post. I was diagnosed last year, about a year ago. The first words from the consultant were; the tests show that you have pbc, it's something that you'll die with and not of. Good start, I don't have too many symptoms and have not began medication yet. I work as a full I have been told that I can begin it when I want to. I have yearly checks at the moment. Basically I'm well, I follow a healthy low fat diet and do light exercise, I do get fatigue but this passes (it's awful while I have it) It seems that its mostly down to self care and this wed site that we get support though! .
Hi beth_1, apologies for late reply, the response I have recd from this site has been brilliant, this has made me happy. I also realise there are many contributing factors why I am here and how to ensure I live my life. Since, I have followed ranrace advice and chosen to take control, I have in place the support network I need and require in the future. Meantime, I make my peace everyday with God and will continue to until the end of my days. It has made me think and question "What really makes me happy?" May we all find our answers. Stay in touch. Mwa all!
God Bless you for your reply! My hubbie took me to the coast today and we had a boat trip, we visited lavender fields too in a place called Heacham Lavender. I'm tired and the walking was almost too much but I am now so relaxed, so much of this is about a good life/work balance. I don't think that we do this very well here in the UK. Take care Luby48.
How do I get the DVD for PBC. Just read all the above and find very helpful. I was diagnosed in March and felt everything as written above. I am more accepting now, but this fatique is hard, to wake up every morning feeling exhausted is hard but moving really helps alot, I feel completely well while I'm exercising, and that's just walking most times. Thanks everyone... if I could have more info on the DVD I would appreciate.
Search the email for liver north as they can send a DVD for a small fee- a patients guide to pbc. That's all I have from directions above from Ladyliver, unsure if this is ordered from Australia or thru PBC foundation. Good luck.
I was diagnosed about 6 months ago. I think I was feeling exactly the way you are feeling now.
Yes I do go for labs and a lot of Drs appointments.
i've come to realize that life does go on. I do just about anything I used to do, however there are days , That I am tired and just rest when I can.
You found a good site to be on. The people on this site are kind, very informed, and it is help me a great deal to know that I am really not alone with this disease.
I I hope you continue to have no symptoms and the only advice I have is to be positive
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