Need a ray of hope

[Irisw]

Hello all. How many of you have had PBC for 15-20 years and are doing okay?

I’m very new to this diagnosis and am trying to not see it as a death sentence. I’m trying not to walk around wondering when I’m going to attract the next autoimmune disease...etc

Do you all vacation, travel, hike ...anyone bike?

I’m still in shock and trying not to get into a place where I feel that everyone else is having a great life except me.

I’m going to see a therapist soon for grief.. just need some experience strength and hope.

[Oidra]

PBC for 18 years. Now 78 years old . Have travelled all over the world (with PBC) . Walk every day but gave up the bike after I fell off. 6 grandchildren. Busy life. Have had to look after my husband for the last 5 years who had cancer, a stroke, a cardiac arrest in a swimming pool. Very lucky lady as PBC has never stopped me doing anything I wanted to do.

Have you joined the PBC Foundation to get correct information? With specialist care and a few adjustments there is no reason to suppose that your life will be shorter than your contemporaries and as in my case it could be longer.

[liver-bird in reply to Oidra]

Go Oidra 😀

[Irisw]

Thank you

[peace_lover]

Hi. I was diagnosed in 2004 and am now 64. The worst thing I personally find is the fatigue. I eventually had to give up full time work because of it, but still teach dance part time. You will find a way to deal with it all, in your own way. It hasn’t stopped me living a full life, but I have to plan things carefully. As they say, most folk die with PBC, not from it.... I now have another auto immune disease, and I’m learning to cope with it also.

Best wishes

Susan

[dianemle]

Diagnosed for nearly 18 years. Now 59.

I have 5 young grandchildren and look after them. Still travel abroad. Life carries on you just have to adjust.

[kingsnorth]

Hi im 68 and was dìagnosed with PBC last February. Like you l was worried and scared. I have been taking URSO and my lfts are now within normal range. I get fatigued but rest when l need to and work around it. I have just had my 4 year old granddaughter for a sleep over so been running around a lot but l will rest for the next few day. Im off to Spain in October for 2 months. I also have sjogrens and lupus but amazingly cope with each autoimmune disease that creeps up on me.

[boneytoys]

Pbc on diagnosis looks and sounds bad. But for most of us it’s not the worst thing that ever happened and we are still living our lives with our pbc amplified lives and happy to be here. Others do suffer with itch and fatigue and things worse but most of us are relatively in the scheme of things, well.

I was diagnosed 11 years ago . I travel a lot have ridden a bike but man boy I walk and do yoga

Peace x

[butterflyEi]

There is a pinned post on the right of this page where the administrator gives a knowlegable explanation of PBC and Life Expectancy it is certainly worth a read.

I was diagnosed in 2006 (almost certainly had it for about 10 years prior to diagnosis), I am now 67. I try to walk most days and keep myself busy with sewing projects and travel. When I am needed I am there for the children and grandchildren. Since my initial diagnosis I have added two more auto immune disorders. My husband is thankfully a kind caring man who has a great sense of humour which has seen us through his health problems and mine.

As Oidra has said join the PBC Foundation (free to join) where you will find up to date information. Back copies of the Bear Facts magazine have some good articles from specialists in the field of PBC.

[Hidden]

I’am not one of the long standing people with pbc, however I can understand how you feel. PBC Foundation advisors are there to help, give them a call I did and never looked back afterwards. If you’ve joined look at the readers letters in the back copies off the pbc magazine there is so much inspiration in them.

I’ve been diagnosed 9 years, before my children married . I grieved I wouldnt see it happen, well both are now married and I have two beautiful grandchildren, who I have on sleepovers and go on holiday with.

I worked full time until I was 62 when I found working 12 hours a day too much, I had no energy for anything else, but that was not due to pbc just age I think. I do everything I want to do, I watch the fatigue and I just give myself permission to rest when I need to. I don’t even tell anyone anymore that I have autoimmune issues.

[lms1560]

I was diagnosed with PBC and AIH in 1999. I have been on Ursodiol 500mg, 2 X per day and over the past two years my bloodwork is normal. The only symptom that really bothers me is the mind-numbing fatigue. I overcome this through excessive coffee intake and sheer force of will. Approximately once a month, I require a two hour nap on Saturday and Sunday. I am an intensive organic gardener and beekeeper. I have a very busy and active life and at age 58, I see no need to worry about my life span.

Find a doctor that knows about PBC and plan for a long life!

[Evaibrahim60]

I believe I’m coping well. Was diagnosed on 2001 and also believe I got it for much longer than that because blood tests has always shown som elevation of the liver enzymes for very long time before diagnosis. Also have many othe autoimmune conditions but somehow coping. At the moment and till the 23/10/2018 waiting for rediagnosis for the liver! Keep doing what you like to do when get fatigued just rest for until feeling well again. Don’t worry be 😃

[Jackie71]

I know where you are coming from I can still remember the date I was told and I am eight years further on. I will be hones t and say that on initial diagnosis I fought my way from that point nothing was going to beat me I wasn't ready to give everything up, yes I changed completely what I ate, alcohol went out of the window, dropped many of my friends - it was the only way I could cope. It took a long time to come to terms with it but I still work fulltime, yes I get tired but I have found that what works for me is to keep going until I can't do anymore then I just start the next day. The last four years I have travelled abroad, not to anywhere where I have needed inoculations though. The further away I have got from that first diagnosis I suppose the safer I have felt, I still take loads of medication and still go to the consultant twice a year, and yes I think I probably know more about the illness than my GP. You just have to keep going and do what feels right for you.

[mrspeffer]

Of course you are in shock and feeling unsure of your future. I was 44 when PBC was first suspected, 48 upon diagnosis. This all started in 1997 while testing LF's due to a strong medication. The information at the time was limited to the general public. I made a big mistake in believing and hanging onto the information that told me I had a 2-20 year prognosis. So, what did I do??? Divorced my husband(he needed to go anyway), gave away most of my possessions and moved to the island of Kauai where I promptly spent the majority of my money. Well, I just knew I was going to be gone in two years, so I was going to live it up right!

Guess what? I'm still here. Feel good most days, travel, play, teach and practice yoga, laugh, have friends. I remarried and live a great life.

For me, the most important lesson in all my "madness" is that I am not in control. I do not get to decide how all this plays out. So, and this took counseling, I've reached a point where I'm comfortable with my disease and the way things are going today. Ask me tomorrow, it might be different. But when I have moments of negative thoughts, I remind myself that it is only that, a thought...thoughts and feelings are not facts. I'm not sure, but I would tend to think that there are folks on here who have many added complications other than PBC. I have to count my blessings over having just PBC. Counseling is a great idea. The grief you mentioned may be for something else, but there is definitely a grieving process with this too. Allow yourself to feel all those emotions so you can resolve them and move forward. Be well

[Irisw in reply to mrspeffer]

Really needed to hear this

God bless

[mrspeffer]

Give yourself a break...I know in my heart that all this will be fine

[Flowerwh]

I was also just diagnosed and reading all these responses to your post made me feel better. It’s been a roller coaster of emotions this past month since I got diagnosed. I need to be positive and hopeful. People on here are so great!

[shaza1966]

Hi Irisw I have had pbc for 20 yrs now and my liver doc says that i will most likely need a transplant in my lifetime your going through the emotions of nearly every single one of us had to when we we're all diagnosed. Your not alone . It saddens me though cos what i felt at the start i no longer feel any more . And i can safely say that you will be the same . I don't look at it as a death sentences i just look at my life as a roller coaster ride and it has it's ups and downs as does life for most people in this world . I do not stress over it anymore . Your right it is like grieving but like all of us we deal with it all different and unfortunately you will have to go through the process of it all but you don't have to do it alone people are here for you . I pray for healing courage knowledge and strength for you best wishes to you . It's not all doom and gloom life still goes on just praying that it doesn't take to long for you to accept what life has thrown at you

then you can enjoy living 😁

[cocotte5]

hello ! im in the States,I've had PBC since 2002! doing good fibro scan last september : stage 2 a little fibrosis ! had endoscopy last monday ,no varices but H pilori! on antibiotics for 2 weeks! I retired last june from my job ,i was there 40 years! on ursodiol since 2002 i just dont think about my PBC! nobody knows anything about this disease anyway! I think im getting used to the Urso cause my AL P is pretty much staying the same [233] my wonderful doctor wants me to start taking oca twice a week with the urso[ after we get rid of the HPilori so try not to worry too much take your med and keep on living your life good luck

[gwillistexas in reply to cocotte5]

G’morning! Happy to hear you are doing well. I take OCA and it has kept my numbers in a good range. I am scheduled for colonoscopy and endoscopy the 30th. Oh how I dread the prep. 🤢. I’ve never had both at the same time but I know I won’t know anything about it. I’m glad he’s doing the endoscopy especially. Good luck to you with OCA. Let us know how you do with it. 😊

[cocotte5 in reply to gwillistexas]

thanks! good luck also with your tests 2 the same day ! thats a lot! me too i hate the prep! im kinda overwelmed with the meds im taking for the H Pilori! i have to squeeze my other meds with the 3 antobiotics ,did u have side effects with Oca? i was doing good with urso till they switched over to ursodiol generic! but my AP have been staying the same , all my other numbers are good its beautiful here in mich 85 d! talk to u later!

[gwillistexas in reply to cocotte5]

Thank you. I’ve had no side effects from OCA. Just like taking a vitamin each day. I’ve never itched and was prepared with OCA but it didn’t happen. 😊

[cocotte5 in reply to gwillistexas]

thanks im glad to hear that!

[gwillistexas in reply to cocotte5]

I hope you will do okay with it. 😊

[gwillistexas in reply to gwillistexas]

I’ve been on OCA 2 years