Let me introduce myself. My name is Donna Boll. I have been given the wonderful opportunity from The PBC Foundation to facilitate your online support group, Health Unlocked. For the last 6 years I have facilitated an amazing online PBC support group for The American Liver Foundation. I too had PBC for some 20 years before receiving a life saving liver transplant 18+ years ago - and am doing well. I know first hand the many challenges someone with this disease encounters on an almost daily basis. For 43 years, before my retirement 9 years ago, I practiced as a registered nurse . There were ways I found helpful for my members to get to know each other as just ‘people’ - not merely someone who has a common liver disease. I may,in time, see if these prove helpful for this group as well. Self care, both physically and mentally, is of the utmost importance for all of us. I want to let you all know that I am looking forward to checking in on the site throughout the day to reply with any information / suggestions that I can as a nurse and/or as a PBC patient myself. As always, no medical advice is given except from your own physician. All of us exchanging information and experience is priceless. Please be patient with me, as I am in the US and may not be familiar with some UK terms or your health care. I hope to learn from all of you. I don’t want any of us to think we are only a common disease group - we are so much more who need to always strive to live the best life we can. I hope you will be patient with me as I begin this learning journey with all of you. Looking forward to getting to know you and help in any way I can with this very complicated disease. We are all in this together. .Any suggestions for the group are gladly welcomed. This is your group. I will officially begin on February 1st.
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Hi Donna, welcome to the group. I look forward to your communications. I was just wondering if you have any experience with Vanishing Bile Duct Syndrome (Ductopenia)? I'm on the verge of being diagnosed with this and feel a little lost. I haven't had much info from my hepatologist about this yet. I'm very nervous about it all. Thanks
Welcome, Donna! I found your post really interesting. I think for the most part we are told once it’s triggered we will always live with PBC, and that even after transplants the condition continues. But you say you “had” PBC until your transplant. I’m curious if you made any changes in your diet or lifestyle after the transplant? Do you take Urso now?
I'm not sure if I answered your questions or not.... I try to eat healthy but struggle with weight issues for many years even before transplant. I do take Urso since the transplant - and for 20 years before it. I try to remain active. I love water aerobics at the Y twice a week. I have continued to see my hepatologist and get lab work regularly since the transplant.
Welcome to you, new admin! I have found the forum helpful. I am also in the US and luckily have access to a great healthcare provider who is familiar with PBC. As for suggestions, you could periodically post links to any pieces that come out from the foundation or newsletters and seek comments from participants. I have found that a lot of times, if I have a question, it turns out there is an article addressing it.
Oh Donna I am overjoyed to discover you are facitilating here on HealthUnlocked. I have missed your input, your knowledge, expertise, and your thoughtful responses! Best wishes and welcome!!
Hi Donna! It’s Mary Kay from MN. I know you will offer this group much knowledge and support. I went to the PBCers Conference in PHX a few weeks ago and learned a lot. I’m still doing fine and hope you are too.
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Cause of PBC
Should I mentally prepare for the possibility..?
