Some 'tips' for new/already diagnosed members

[DonnaBoll]

If at all possible, see a knowledgable hepatologist

Only use trusted and reputable sources for information

Don’t google unless the article is current and from a reputable source such as The American Liver Foundation, Canadian PBC Society,The PBC Foundation, LivingWithPBC, Cleveland and Mayo Clinics.

PBC is not a death sentence.

Just take a breath. PBC is manageable. Most die with PBC - not because of it.

Eat healthy and keep moving - do whatever exercise you can.

Try to find a compassionate doctor who knows about PBC and you want a long term doctor-patient relationship with.

Look up all of the words you don’t understand or have never heard of - There is a glossary of terms in the PBC app

Stay calm...it will be ok.

Find support that offers what you are looking for

[exy21]

I see a gastroenterologist and have done for 18yrs. Why only a hepatologist?

[DonnaBoll Administrator in reply to exy21]

Very often a gastroenterologist isn't familiar with PBC enough to treat someone for a long term relationship. If you are confident he can give you the care you need then I'm happy he can. Being a rare disease so many primary and GI docs just don't treat many people with this disease.

[ninjagirlwebb in reply to DonnaBoll]

This is very true…my primary care doctor was also a GI and he knows nothing about liver diseases i.e. pbc and referred me to my hepatologist.

If available, good to choose an expert who is on the forefront of the new research, tools to manage pbc. Of course, also have to find someone who does not rush through appointments and also available to consult with as needed.

I am very grateful for the referral to my hepatologist. He is very responsive and very prompt about getting back to me. I have 2 doctors like that. They either get back to me the same day or the next day. Makes me worry less about things.

[DonnaBoll Administrator in reply to ninjagirlwebb]

You are very fortunate to find someone who you feel confident with. Many of us with PBC usually start with a diagnosis by our primary or GI doc but are fortunate enough to be referred to a hepatologist. We just have to feel secure that they are knowledgeable about this rare liver disease. All the more reason for us to educate ourselves about PBC as much as we can from those reliable sources.

[ninjagirlwebb in reply to DonnaBoll]

I was diagnosed by the hepatologist after he sent the biopsy slides to an expert pathologist at Columbia Presbyterian University for review to substantiate. I was put on urso right away.

[DonnaBoll Administrator in reply to ninjagirlwebb]

Sounds like the very best plan for sure. I know of some of my members have had concerns that the pathologist who looks at their liver biopsy slides was not really knowledgeable in what to look for. It really makes a difference. We all need to be sure that we express to any doctor who does a liver biopsy that it's viewed by someone who knows what they're looking for. Getting on Urso right away is the key to keep the disease from progressing unchecked. I assume you have your liver enzymes repeated every 3-6 months. Good care and confidence in your doctor is so important.

[gwillistexas in reply to ninjagirlwebb]

Same here. I think of my hep as a “liver whisperer “. So compassionate, kind and calming. I spoke with his nurse Wednesday about a couple concerns regarding this new drug. He has scheduled a televisit with me to try and out me at ease. Love him.

[gwillistexas in reply to gwillistexas]

Meant “put” me at ease.

[DonnaBoll Administrator in reply to gwillistexas]

Having a doctor who is kind can make all the difference, can't it?

[gwillistexas in reply to ninjagirlwebb]

I’m already mixed up on my days and for whatever reason was thinking this is Friday. Too busy to think straight. I talked to the nurse Monday and got msg yesterday that he scheduled the televisit.

[DonnaBoll Administrator in reply to gwillistexas]

we all have 'days' like that....😀

[DonnaBoll Administrator in reply to ninjagirlwebb]

First of all, I applaud any doctor who admits he doesn't know how to treat a particular disease. Knowing he couldn't give you the best care, he knew you needed someone else.

[ninjagirlwebb in reply to DonnaBoll]

He is a very caring primary care doctor. He nagged me to get to the bottom of the issue. Kept insisting on a liver biopsy. I was too scared. So he said I know I wont convince you so I need you to go to the hepatologist so that he can convince you.

So I made the hepatologist appointment and my PCP discussed my case with him and sent over my medical history prior.

After I was diagnosed, my hepatologist gave him an update on me. My pcp called me to comfort me…told me while I have the pbc, at least it is being addressed and that my hepatologist will take good care of me. I was very touched.

Needless to say, during that time I was an emotional wreck. In hindsight I should have spoken to a therapist. It was so draining on me and the constant worrying.

[exy21]

I really am surprised as my gastroenterologist is all the things you state. Knowledgeable. Caring. Takes time with me to answer questions. Responsive also to calls. In the UK you don't get options to pick specific specialists unless you go private. SHE Donna Boll is my gastroenterologist and very upto date with new research etc.

[DonnaBoll Administrator in reply to exy21]

I'm so glad you have found a doctor who you trust and feel can give you the care you need. Having a doctor who answers questions and responds promptly to calls is often not the case. I know we are very fortunate here in the US to have access, in most cases, to a hepatologist.

[ninjagirlwebb in reply to exy21]

Glad you have the GI…sounds like you are in good hands.