I'm 41. I only found this site a week ago, so this is all very new to me. My diagnosis is early for me, no scarring and my levels/function are all really well. They went up from the liver biopsy, but coming back down. I do have fatty liver and I've been actively working on making that healthier since January. I'm trying to focus on changing what I can for the better, as I can't change having PBC. I want to give my liver the best fighting chance to stay with me as long as possible.
I've Googled and I've talked with my doctor. My followup for a plan (meds and such) is next week. But I was thinking, there are so many stressors and what ifs when I look for advice. And the knowledge out there is so overwhelming and none of it seems to be about the person, rather what I keep finding is information about the patient with the disease and treatment, which can be helpful in a lot of ways. But, is there something I can do now to help me on this journey? I'm a mom of three very little kids, wife and a hard working colleague.
So I'm asking you, fellow PBCers, from a newly diagnosed person...if you could go back in time and sit down with yourself after being diagnosed what would advice would you give? Or what advice would you give a newly diagnosed PBCer?
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I'd tell myself what everyone on this wonderful site told me....
"Don't panic. It's gonna be ok. Give yourself time to wrap your head around what PBC is. Educate yourself on this disease, good nutrition, exercise etc. Remember... PBC is usually a very slow progressive disease. There are excellent medications to slow the process down even more and some very encouraging new drugs in the pipeline. *You will most likely die "with" PBC, "not from it."❤
Did that advice keep me from stressing.... Lol... no. But it totally should have!! I'm 2 1\2 years in now and I am nearly my old self.... Just a new normal, I know.. sounds cliche, but, a few tweaks are required here and there, adjustments, but, ... You can do it! 💪❤
I ditto everything Stella has said. When I was first diagnosed almost a year ago, I was obsessed with reading and learning everything I could about PBC. While that is not often recommended because there is so much misleading and scary info out there, it was therapy for me. If you're that type of person, I'd encourage you to stick to reputable sources like the PBC Foundation, Mayo Clinic, websites ending in .edu, .org, etc. Get the best understanding you can of the disease and always be proactive in your care. I'm a bit older and my kids are grown but I work a demanding, fun job, care for elderly parents, and have a wonderful granddaughter, but it can be stressful. I have always been a person that burned the candle at both ends. THE MAIN THING I have learned is that I must take time for myself when I feel like I need it. I truly believe that stress fuels this disease..or any autoimmune condition, so make time for yourself no matter what. Educate your family and friends so they understand. I am in early stages with no symptoms and I just live my best life and hope it pays off. Exercise, eat as clean as you can, take your medicine, and definitely take stress breaks. Best wishes to you and this group is great for info!😊💕
I'd say this mantra to myself: PBC is what it is, and I am what I am. Each day as it comes, I'll help these two manage to get on together.
That is all! I hope you find a way that is comfortable and useful to you. Keep us informed!
I was diagnosed circa 11 years ago when i was 34. I too had a young child and was terrified that I wouldn't be around to see him grow up. I consider myself fairly lucky, my PBC has not progressed much in that time and i do not take any medication. I do suffer from bouts of tiredness, and have learned that when i feel absolutely exhausted, it is OK to have a rest. Be kind to yourself, don't terrify yourself looking at the worst-case scenarios on the internet and live your life. You cannot change your diagnosis, but you can live life to the full - DON'T let it rule your life.
- save the heartache and avoid consulting Dr. Google, because that info is seriously out of date
- find a specialist who is familiar with PBC.
I was fortunate enough to be seen at Mayo, where I was told that I would die with PBC, but not from it - big difference! I’m now seen by a liver specialist in my city.
- live and/or get healthy - it helps both body AND mind - including diet and physical activity. Avoid fads or drastic measures.
- take the medication and get tested on the recommended schedule.
- read the chat boards to stay in touch and encourage others like yourself, but don’t let it consume you
- be encouraged. I’m not a medical type but I’ve been told that medicine as we know it is changing all the time, so treatment options - or even a cure (!) - will continue to evolve.
Best wishes to you, and deep breath! You’ve got this.
I am 42 now and was diagnosed with PbC about 7 years ago. My hep told me the same what everyone else is telling you and also told that consider it like any other slow progressing chronic condition like diabetes. there might be no cure but it’s in your hand to slow down the progression. Exercise everyday atleast 30min, eating healthy, taking meds regularly, no alcohol, taking rest between activities and sleeping properly is the mantra for it.
First of all you are on the right track with your attitude. If you let this get you it will. Like yourself, I'm too young I have a lit of living to do.
Live everyday fully, be you. If you're tired allow yourself a rest, don't be a hero, there are not any hero capes out there to fill this position.
Sometimes its crappy, we have to accept that, work through it maintain our sanity and sense of humor. Eat well, enjoy a treat, don't deprive yourself of the things you love, it frustrates ya In the end.. take care to not let pbc, shadow your life.. i kinda put it on the shelf until i have to acknowledge it is still there, dusty but there.. i talk about it when I need to, I say when I'm tired, I live it up and down as necessary.. I'm a 56 yr old woman, diagnosed 9 yrs ago almost to the day.. I've have lots of set backs, mostly because they knew a lot less than they do know. However, I'm happy healthy and I do life with zest.. No PBC is going to stop me in my tracks.. good luck to you always, your going to be good at this.. kero your attitude in check, is what I would say.
Good morning and welcome to the best place to find answers to many questions and concerns. Since I joined this forum a little over a year ago, I find I have more serenity in knowing I am not alone nor unique in my situation. When I was diagnosed via biopsy, there had been about 4 years of suspected PBC. Finally, upon insistence that the medical community figure this out, a biopsy was performed to rule out all other possible problems. That was 22 years ago. I was ready to jump off the deep end. At the time, the only information I found on the internet was the prognosis of 2-20 years. So, having convinced myself that I had 2 years to live, I swiftly gifted my possessions to family and friends and move to the island of Kauai to live in peace. I began to spend my money and had no cares for the future. Imagine my surprise when 2 years passed and I was still here and feeling fine. I was a little bruised in my ego for the loss of worldly possessions and money, but still alive. So, if I could go back I would remind myself that I am not in control of when this life ends or how it ends. I would live every moment rejoicing in the fact that for this day, I am alive and well. Do I have issues??? Absolutely. What has happened to me with this whole ordeal is a deep spiritual connection that makes my days easier. There are lots of articles on the forum regarding this subject. If there is some members writings that resonate with you, search for their threads and get more. I wish you the very best on this journey. Stay close to us. Be well
Eat an anti-inflammatory diet (see The Autoimmune Solution by Dr. Amy Myers), exercise, and get on Urso right away to avoid secondary damage to your liver caused by bile not moving through fast enough.
Count your blessings that your illness was probably found early and there is a really good chance that you can live a nearly normal life. It's a really good time to take a good look at your lifestyle and see what needs improving....excersize, diet, whatever and then just take care of yourself. Sometimes that is easier said than done. Sometimes you just need to rest.
I was diagnosed over 20 years ago and at the time had a new baby and a 5 yr old. I was told that I would need a transplant within 10 yrs and just put my life on hold, terrified I wouldn't see my children grow up. I was 29 yrs at the time and had already suffered with it for 3 yrs without proper diagnosis. I was afraid to change the mortgage or do anymore training in work because I didn't know how long I'd love. Things have moved on so much, my care was moved to a specialist in QEHB and that changed my life. Regular checkups, meds and doctors who knew what they were talking about. My children are grown up, I have a beautiful grandson and am almost 2 yrs post transplant. Live your life is the only advice I would give you, it's well worth living xx
such great advice from all the above contributors I would just add:-
that you keep a record of your blood tests. I have made a spread sheet. Someone on here suggested that results from one year are fine but it is the overall results of many years which show the pattern.
diagnosed 2006 but almost certainly had PBC 10 years prior but doctor did not pick it up as I was also peri menopausal. Thirteen years on (or 23 depends on how you look at it) I am in my upper 60s I eat a diet rich in vegetables, low salt and sugar, rarely red meat so eat chicken and fish have the occasional treats with an afternoon biscuit with tea.
We may all have a PBC diagnosis but it seems to affect us all differently. Some will have a transplant others will never experience any symptoms, take the URSO regularly as it helps keep the flow of bile through the liver, try to avoid stress which does seem to be detrimental to us, if you are tired rest there is as yet no medication for the fatigue of PBC, if you itch seek medical help. (There is a good article on itching in the spring 2015 issue of the Bear Facts magazine by Prof. Neuburger on the PBC Foundation website, which is free to join). There may be days when you feel overwhelmed that is when we are all here for each other.
Keep in touch with us here and let us know how you get on.
Plot your key test results on a chart. They will go up and down and dont worry about this but observe any TRENDS over time and act on them. Doctors tend to look at last test only. Best of luck. W
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Hello I'm new! Bit confused about ALP and imaging options..
side effects from Urso
Shaking and joint pain.
