Tuesday 'Tips'

[DonnaBoll]

What general piece of advice would you give to a newly diagnosed member?

[Samanthaann]

take a deep breath and really educate yourself. Stay active on this forum and ask questions, read others post. Don’t be afraid to ask questions to your health care provider. Stay positive.

[DonnaBoll Administrator in reply to Samanthaann]

great advice! the more someone knows about this disease from reputable sources the less scary it can be. No one knows about this disease when newly diagnosed, making even the idea of having a liver disease seem ominous. Attitude makes all the difference for sure. There is nothing easy about PBC. Exchanging experiences makes us feel so much less alone in this. Thanks for your helpful input! Taking that deep breath does help....

[Gaspereaux]

Don’t Google, get your information from reputable sources. Be your own advocate! Lots of GP’s have never treated this disease before, so stay “au courant” yourself. Ask lots of questions, don’t stay in the dark. This is a great place to connect with others. Stay positive!

[DonnaBoll Administrator in reply to Gaspereaux]

I love everything you said! Google is not your friend when first diagnosed and yet this is usually the only place someone even knows to go. The more we know, the more we can be confident in knowing the care we are receiving is the right care. You are so right about asking questions. Get answers that you understand as well. So many doctors are treating patients with PBC who don't really know how to. We have to educate ourselves all too often - never being afraid to question our care. Thanks for your response.

[Sister65]

To get Dr. David Jones's book, "PBC, The Definitive Guide..." which is available on Amazon.

[DonnaBoll Administrator in reply to Sister65]

absolutely!!! I wish this book was available at the doctor's offices when diagnosis is made right from the beginning. I have the book right next to me now. So much misinformation would be avoided by folks 'googling' for information that either scares them or is just wrong. This is a wonderful tip - thanks so much! I love that it's written that you can understand everything too.

[Sister65 in reply to DonnaBoll]

I have used it to help me ask questions of my doctors. I was going to a gastroenterologist who knew PBC existed but not much else. When I began seeing a liver specialist, I had already read the book so had questions ready so I could get as much information as possible from my appt. I refer to it often. I am lucky in that my numbers are good, I responded immediately to Urso, and I feel absolutely fine but it was a great help when first diagnosed. Doctors here in the US are so pressed for time, they don't go into the detail needed for a person just told they have a life long condition. Having specific questions forces them to take that time. Like you, I wish the book was given out by docs.

[DonnaBoll Administrator in reply to Sister65]

So glad the book made you more empowered to know you're getting the right care. It certainly gives anyone who reads it the right information - so vital to deal with this complicated disease. Doctors should have to read it too! Thanks for your comment.

[lovesoccer]

Don’t go down the rabbit hole of broad-scale internet searching PBC. It put me into a mental tailspin. Instead, look to the PBC Foundation both for relevant, current information, and for support.

[DonnaBoll Administrator in reply to lovesoccer]

for sure!!! so many newly diagnosed folks are so traumatized from the very beginning due to misinformation. Some of it could easily be avoided if health care professionals (who hopefully know themselves) would just take the time to give them some guidance on where to get information. The PBC Foundation is totally dedicated to education of patients as well as physicians. Dr. Jones' book is a huge part of getting the right information in such a way that everyone can understand. Do you have his book?

[Wocket]

Take your Urso and don’t panic

[DonnaBoll Administrator in reply to Wocket]

thank you for your few but of so wise words!!😀