I have had PBC for 36 yrs. I don't itch and have tons of energy, My alk phos is always elevated but my bilirubin is always normal. My mother also had it and lived another 22 yrs with a liver transplant. She had 48 hrs left to live when she got it. So grateful!!!!
Answer Summary
Members rallied around the idea of starting a Zoom support group for people living with PBC, with several expressing enthusiasm and interest... Read more
Hello JoanKlatt2
We will be looking at doing a pilot if it gets approved. It is a support group rather than an education group. The Education piece mightbe something the community managers can look at?? A support group is very unstructured hence the members can share where they are at, did they have a good week, a bad week, are they improving do they have any info based on their own experience to help another member who's having a bad week. Its that kind of group.
Would be interested in joining the group if you expand Of course I understand that you would like to keep group small and manageable so another alternative would be perhaps to learn from the group about new treatments for PBC
I will be seeing my hematologist so will pass on any new information that he relays to me for he actually takes time with his patients to have a conversation and even answer questions !!
Hi Lisa
Thanks for the update. Look forward to you working out the kinks and getting us going.
Hi Vickie. That sounds like a great idea. Sometimes it is easier to ask questions when there is a person that you can see. I've wanted to do a meet-up with people close to where I live.
We will do a pilot first as soon as I get the ok from administration. The group will be small so it’s successful. Then hope to add more groups after it’s vetted by admin.