Thursday Thoughts

[DonnaBoll]

What were your initial reactions after your diagnosis?

[Samanthaann]

A little confused. Wanted to know what caused this. Started doing research , This was a year and half ago and when I tell my other doctors primary, obgyn, ortho etc they all know very little about this condition. So don’t be surprised when you mention it to other providers or nurses that you get a strange look.

[Lollypop89]

I need more information and need to even see/speak to specialist (which I still haven’t to this date,diagnosed July last year)

[DonnaBoll Administrator in reply to Lollypop89]

For the most information that is up to date and accurate in every single word, I highly recommend getting Dr. Jones' book. He has a first and second edition - get both if you can. "The Definitive Guide for Patients with Primary Biliary Cirrhosis". It is written entirely so everyone can understand it. This book is invaluable. He is the world's leading expert on PBC. So much information there! They are available on Amazon.

[Gaspereaux in reply to DonnaBoll]

It came in the mail yesterday! I am reading it this month, and my husband next month!

[DonnaBoll Administrator in reply to Gaspereaux]

Great!!!

[Gaspereaux in reply to DonnaBoll]

Finished the book in two sittings. It is definitely a “must have” for any patient or advocate of PBC.

[DonnaBoll Administrator in reply to Gaspereaux]

if only everyone had a copy. it is invaluable for sure. I will continue to suggest everyone get a copy of both editions.

[Gaspereaux in reply to DonnaBoll]

Donna, would you necessarily need the first edition if you bought the more current, second edition?

[DonnaBoll Administrator in reply to Gaspereaux]

I only have the second edition but I'm told there is a difference. It makes sense if you are only getting one, to get the second edition in my opinion. Dr Jones was at the Summit last year. I am hoping to meet him this year.

[lovesoccer]

I was terrified because I started researching it right away and all the sites - reputable ones at that - were showing poor prognosis. It wasn’t until after seeing a hepatologist that I got more appropriate perspective.

[DonnaBoll Administrator in reply to lovesoccer]

PBC is not a death sentence by any means. For those who respond to Urso their life expectancy is not any different than from anyone else who doesn't have PBC. We all have to live in the now. No one knows what will happen in any of our futures. I read somewhere that worrying about the future makes you miss all of the todays. Glad you got a better outlook from this disease with education.

[Wocket]

I felt very depressed and was worried about what was going to happen to me. It took about a year to get past that but now I have come to terms with it. I am doing reasonably well now after 7years so I’m not particularly worried.

[DonnaBoll Administrator in reply to Wocket]

Glad you are feeling better about it overall. In the beginning it really is overwhelming. The more we learn, often the less scary it is. Worrying doesn't change a thing - believing that is the challenge. Good to hear you're doing well.

[Wocket in reply to DonnaBoll]

I consider myself very lucky because I can lead “normal” life, whereas my brother has it so much worse with multiple sclerosis. We are a really health bunch 😂

[DonnaBoll Administrator in reply to Wocket]

yes, we can. Some people surely suffer with so many systemic effects thru their whole body. I think MS would be much worse for sure. Sorry to hear that for him. We are blessed in many ways - we just have to look. We have meds to take, we can walk and talk, and the progression is very very slow. I love that you do feel 'lucky'. We are when we look around us at others.

[Gaspereaux]

it all happened so quickly, i didn’t have much time to think. It is still barely four months since it was picked up in a routine blood test, sent for US and full body CT (as i had to have a cranial scan anyway for a coclear implant), off to the gastroenterologist who got an AMA (same day) to confirm his prognosis, which was correct. Met with the hepatologist two weeks after but was just to get to know each other before I left two days later for southern Florida. It was a whirlwind, and i guess i would say I was in a numb state. I could only research when we stopped at hotels en route. I joined the three liver foundations (uk, us and ca) and ordered the book Donna recommended. I am booked for Fibroscan, bloods, etc in May, and will by then be prepared to ask the right questions….my GP reacted so quickly, simply because he admitted he didn’t KNOW what was going on with me. I am truly grateful, and feel that everyday is a gift. Be your own advocate….Donna, y9u are an inspiration to all of us, and i hope your positivism is contagious! 👍

[DonnaBoll Administrator in reply to Gaspereaux]

Thank you for your wonderful uplifting post. It is a whirlwind indeed. Even being a nurse at the time of my diagnosis some 38 years ago, I sure had never heard of PBC. Getting the right information from the right sources is key. Glad you got the book. Every single person who has PBC should purchase it. Sounds like you doc, even though he admitted he doesn't know much about PBC, is doing all the right things. The Canadian PBC Society is also a good source of information. Join online as well. Where did you say you live? If you live near Edinburgh,I'll be there in early April. Thank you for your kind words. I just want everyone to know it is not the end of the world --just a slightly different one for us.

[Gaspereaux in reply to DonnaBoll]

Oh my, I live in a small village on the northeastern coast of New Brunswick, Canada. But I am in Florida at the moment, and on April 13, will be going to the Patient Education Day (hubby, too) at the University of Miami….it is on Advances in Hepatobiliary Diseases. Looks like an interesting day…..

Itinerary

[DonnaBoll Administrator in reply to Gaspereaux]

I think so too. On April 13th, I will be leaving Edinburgh from The International PBC Summit. Do you belong to the Canadian PBC Society? lots of good things from them....