Newly Diagnosed and Terrified

I am 44 years old and have recently been diagnosed with PBC. I had never heard of PBC and it certainly has come as a shock to myself and my family. After meeting the Gastroentologist I understand my prognosis is good and that I should have a normal life expectancy as anyone without PBC....I just find this hard to believe. I started Ursodiol right away and will likely need it for life. I am very interested in learning more and are hoping some of you can offer some guidance into nutrition, exercise, perhaps some homeopathic methods to assist with living with this disease. I am really scared that I won't be privileged to live until a beautiful old age. I am very interested in what others are doing to maintain healthy living. I live in Canada but have been researching all sites that I can find. I love the support that is offered through this site.

21 Replies

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  • Good morning Lee9294,

    I have sent you a private message

    Regards

    PBC Foundation

  • Hi Lee. I too was diagnosed at 44 - 3 years ago. Terrified also at first but kept positive, did what I was told, the meds do work and I am stable now. Liver functioning back to normal. I have a few other consequential issues that give me more trouble now than the pbc. But that is really just tests and monitoring. No real symptoms. I live a normal life, work full time very busy. I try to maintain my ideal weight so eat well anyway, the odd glass of wine. I generally go to bed 10:30pm but I'm up around 6am so that is the same as most. Believe me it does get better. It takes a while but the terrified feeling goes and you make the most of each day x

  • I have PBC and on URSO.....I am 70 years old...go out lunching with friends....go to keep fit.....look after boisterous grandchildren.....keep going til I hit the wall tired then I have a rest day.....nothing to be terrified about although when diagnosed it is a shock...

  • I am 34, with two small children. My gasterointerologist discovered my antimitochondrial antibodies when I was 29. He thought it was a mistake and retested twice. He then explained that I would one day develop PBC, and he made the prognosis sound terrifying. I cried for days, I was just devastated. I took the new information, that I would eventually develop it, and talked to a specialist. She let me know that everyone is different, so while it is hard to compare people with PBC, she said that most people who have PBC die from something else. She suggested that my husband and I hurry up and have children, as PBC can be associated with fertility problems. We had two children and after our second was born, my alkaline phosphatase stayed elevated. My specialist confirmed that I had developed PBC and put me on Urso. I again cried a lot, as I didn't expect it so soon (4 years after I was informed that it would happen.) I had to quit breastfeeding my baby when I began the Urso, which was also sad for me, but I will say that it works for me. My alkaline phosphatase is normal now and my outlook on the disease is more positive. It just takes a lot of time, please know that what you are going through is awful, and it's okay to feel sad. Also know that it will be okay again, your life will feel normal again and you will accept the fact that you have PBC. This is a hard period, but you will get through it, I promise. And you have all of us here, we know what you are going through and we are here for you. Sending you some positive energy, prayers, and hugs

  • I wonder why you were told to quit breastfeeding? I breastfed my daughter for 7 months while in urso as I was told it was safe - now i am worried!

  • My liver specialist told me that it should be okay, but she didn't recommend it because the Urso is excreted into the milk. Our pediatrician explained that it was borderline okay, based on the class of drug. He explained that the biggest problem would be that it could give my son stomach discomfort, so we decided against it. It was frustrating for me because I breastfed my firstborn until he was 2.5 and wanted to do the same for my second baby. Now I'm wondering if I should have breastfed him anyway

  • I'm a male 38. I was diagnosed with pbc 6 month ago and I haven't still plan to have baby yet .. Does pbc effects make fertility too ?

  • Welcome Lee. it's okay to feel terrified at first. Our stories are so similar. I was just diagnosed in May. I was shocked and so scared. Once I saw the specialist I was so relieved as my prognosis is good. I am on Urso for life. I am starting to settle and feel so much better. what I think has helped me is trying to learn everything I can about PBC. However trying to do this by finding up to date research and health info rather than info that is already outdated. What I understand is that we are so fortunate to live in a time where research and early diagnosis/treatment have radically improved prognosis. I am so grateful for that . This site is another amazing resource for information but also support, kindness, and knowing you are not alone.

    I wish you well in your journey and living a full life with and or despite PBC. Great decision joining us. 😊

  • 75 years old and leading a busy, active life.. I only mention PBC when I want an early morning appointment for a scan, holding a bladder full of water for hours on end or missing food to have a blood test does not appeal!

    The PBC site is the best for accurate information, leave the Internet alone and get on with your life and I hope it is a good one.

  • I too was shocked when I found out (60 years) that I had PBC. I developed symptoms over a few years, everyone's journey is different is a phrase I had heard so many times, since diagnosis. Fatigue is one symptom that can affect you, if that happens, allow your self some time, or like me you will get frustrated (I learnt to allow my self a snooze when I needed it)

    Good luck on your journey, Remember to stay positive, and enjoy all the positives in life of which I wish you many.

  • Don't be scared I just found out a year ago, I am 42 years old , I am at stage one . people can go as long as 10-15 years. it depends on the person. the doctors told me to they are not worried. I get blood work every three months. I just got blood work in June and nothing has change since the last 6 months. I am taking ursodiol of 1200 milligrams.

  • I am 72 years old. Diagnosed in 2011. Started on URSO straight away. I would not bother with information on the Internet. I listen to my consultant, whom I trust, and check into this site regularly. The PBC Foundation is the best source of up to date information. Importantly just get on with life and enjoy.

  • Hi Lee, can't add anything that hasn't already been said. Welcome to the group, the PBC foundation are wonderful, become a member through their website, they are on top of all the latest developments, and their info is totally trustworthy - can't always say that about other websites... Try not to panic, this disease gives you full on permission to love yourself and look after yourself. Follow YOUR rhythm, no one elses, you know you best. **hugs**

  • HI Lee I was diagnosed 12 years ago, I've never had a symptom, my consultant says my results are very boring, and nothing to worry about really. I was told more people die with PBC than from it. I take 3 Urso tablets daily, but apart from that I nothing really has changed in my life. Apparently your diet doesn't affect PBC so you should just eat healthily as a general rule, not because of PBC. You'll be fine, try not to worry.

  • Welcome to our world - it is not as bad as you are fearing. You will get used to the idea and come to terms with it. There are many far worse diagnoses. Be kind to yourself and get plenty of rest. You will be OK. Keep in touch with this site and the Pbc foundation which has the best information. Sending a big hug ☺

  • Hello,

    Newly diagnosed your not alone I was 39 when I was diagnosed. Trust me then I thought it was a death sentenced terrified, uncertain , fear of the unknown.

    My son was 16 years at the time.

    Fear is what I had not aware of the rest of my life.

    I prayed and asked the good lord to give me strength and faith.

    Today I am 54 years old almost in a few weeks ready to celebrate my 55 birthday. My son who I saw graduate from high school and college he and his good wife will blessed with a baby in December.

    Yes, grandma time !

    Don't worry yourself the illness progresses with time you may never experience any symptoms be aware of the disease but don't let it rule your life.

    Everybody systems are different and some may even develop other disease's or have overlaps

    Sjorgen's and scleroderma. Cirrhosis of the liver , I now have. All three however I still function each day I still work full time. I play tennis, walk, ride stationary bike, swim.

    You still continue your life I can't stress enough don't worry and cry everyday. Trust because I did and stress is the worst thing for our bodies. Be on tune with your body when it speaks to you listen

    Someone on this site told me that it was great advice.

    Also, get doctors who understand the illness I have a rheumatoid

    Doctor / internal medicine, liver specialist, Gastro, and my primary care.

    What has helped me is changing my attitude stay positive and also I have worked in healthcare for 30 years I've seen good and bad days.

    You, will have good and bad days and also see that certain foods and things going on in your can trigger your body.

    Stay alert, don't fear, your not alone.

    Everything going to be alright!

    Peace

    Sap

  • Hi Lee, sorry to hear how scared you are, please try not to worry

    I,m sure that each member of the PBC foundation has experienced the same fears as yourself, but gradually the fear fades when you realise the prognosis isn't too bad. I was only diagnosed about two years ago at the age of 73 and was shocked as had always been healthy. Now I just carry on with my life and make the most of every day. I think looking back that I had had PBC for years before diagnosis. Just carry on the way you are, eat healthy and take some excercise, I can't give any more advice than what has already been said. Take good care of yourself, Best wishes

  • Thank you everyone for the advice and support. Physically I am feeling great...I guess what scares me the most is the info regarding you can have 10 to 20 years. This is not enough time for me, I have always visioned living well into my 80s or 90s. What does this 10 to 20 mean? Is that it or is that the approximate time before a liver transplant could be required?

  • hi this is Martha it all depends on the person they can go 10 -30 years before needing a liver transplant. I'm at stage one. there are four stages of the liver disease. complications start when cirrhosis start. everybody progressives with the disease different. keep taking ursodil.

  • Thank you Martha, I like your positivity!! Just scared and tired of the run around I have received from doctors.

  • I was diagnosed 2 years ago at age 50. My aunt (mom's sister) was also diagnosed with PBC when she was 50. She is now 83 and doing very well aside from the usual 83 year old ailments! She has been on Urso the whole time, does not drink at all and has not needed transplant or any other significant treatment. Hoping to have the same outcome....with an occasional glass of wine!!

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