New Diagnosis

I am 49 years old and have recently been diagnosed with PBC. I had never heard of PBC and it certainly came as a shock. After meeting the Hepatologist I understand my prognosis is good. I started Ursodiol right away and will likely need it for life. I am very interested in learning more, listening and supporting others. I am very interested in what others are doing to maintain healthy living with PBC?

11 Replies

oldestnewest
  • Hello and welcome to this group. I was diagnosed about ten years ago in my early fifties and have taken Ursofalk ever since. The PBC Foundation is a good source of information as is the LiverNorth group. There is a PBCers Organisation which can be found on FaceBook or through Yahoo Groups. Depending on where you are, if in the UK, there are some local groups which have diary dates for meetings which can be found on the Foundation's web site, join as a member to get into the member's section. Best wishes to you and I hope you continue to do well.

  • Thank you! I will most certainly heck those out. I wish you well also😊

  • Hi fullembrace ,Firstly you should contact the PBC Foundation if you haven't done all ready here they can give you all the correct information you need they will help you in any way they can . As for Healthy life style for me I stay active by going to the gym only recently though as I have lost weight and eating a healthy diet of fresh fruit and veg etc no processed food I do feel much better.I don't find the gym easy and am usually tired after needing to sleep for an hour but then feel refreshed again xj

  • Yes I agree. I am slowly making changes. Ensuring adequate excercise is my biggest challenge right now. Good for you that you have made it a priority. I think it will only help you in the long run.

  • Hi, FullEmbrace. Welcome to the "club" that none of us chose to join. I was diagnosed a year ago and have been on urso since then. The difference in my life now is like night and day between June 2014 and June 2015.

    The key for me was trying to find balance in the various areas of my life. I scaled work back to about 35 hours a week instead of 40+ and changed my daily schedule to include rest breaks between periods of work. I am self-employed and work from my home so it was easier for me than others to make these adjustments. I changed personal care products to all natural products with no chemicals or preservatives. I reduced the amount of sugar in my diet and increased the amount of fresh fruits and vegetables. I use walking for exercise and worked up to a mile a day.

    I take each day individually and like others, experience good days and bad days with the amount of energy available to do what I need to do. I have learned to take care of myself...something I was not good at before the diagnosis. I work with special needs students and know that I must take care of my health if I am going to serve them.

    From the posts here, I have learned that this disease is very individual and you must find what works for you. The people on this site are wonderful and readily share what they have tried to deal with the various difficulties that this disorder brings. I wish you success as you seek answers that help you find balance in your "new" life now.

  • Thanks so much. I really appreciate hearing other's experiences and wisdom. I was scared at first but am slowly learning more. I chose this site for the same reasons you have mentioned. People are very compassionate, supportive, and incredibly knowledgable. I know I will learn so much from everyone. I feel so much better knowing others can understand.

    It sounds like you have also learned so much in your journey. I admire your commitment to take charge of your own health and wellness.

    Do you have other symptoms in addition to fatigue or has Ursodiol helped to slow down progression and therefore other symptoms?

    Thanks again. Best of luck to you.😊

  • Welcome fullembrace hope you're feeling ok any questions about pbc and ee are all here for you this is the best place for any queries you may have also if you just want to learn more about pbc xxx

  • Thank you so much. Yes , I feel like this is a positive place to be in so many ways. Have a wonderful day.😀

  • Good morning FullEmbrace,

    I have sent you a message with our details

    Best Wishes

    PBC Foundation

  • I live in Canada but love your website, supports, and resources. Thank you!!!

  • You are welcome, if we can be of further help , please contact us.

    Best wishes

    PBC Foundation

You may also like...