How does one coordinate?

[Gaspereaux]

Hello from sunny south Florida!

I am enjoying our last to weeks in the Keys. This winter was a very relaxing and much needed vacation. We had little company, so it gave me time to think about my recent diagnosis and come to terms with it. I am grateful to all of you for your support and, Donna, i feel like i know you, you are so personable! Just wondering about my return home to a small coastal village of less than 1000 people. I was so lucky to get referred to both the gastroenterologist and hepatologist, as we never had one in the northern part of the province until a year ago! So…

My GP (general practioner) lives about twenty minutes away.

The gastroenterologist is about 100 miles away. He has refereed me to the hepatologist after he diagnosed me (within three days) and I did have a brief meeting with the hepatologist before I left for Florida (he was very nice and told me to go down, get some sun, take my meds, and exercise when i could). He is also 100 miles away.

So….my question is: am I able to have my GP prescribe anything for joint pain, etc. or do i need to have the hepatologist s approval? Can my GP, if he feels comfortable, order scans, etc. if it has to do with the liver?

It would be nice to see the hep guy occasionally and just have to go up the road to my GP.

Sorry for the long post!

[butterflyEi]

Hi Gaspereaux

Glad you have enjoyed your holiday, relaxation and sun with a little exercise in between is such good advice from your hepatologist, he sounds very nice.

For most PBC patients providing you respond to the medication prescribed an annual visit to the hepatologist with your GP helping in between sounds like a good plan. I am sure if the GP had concerns he would refer you back to the hepatologist. Depending on your GP surgery equipment things like Ultrasound and/or fibroscan can, depending on your health care plan, be done annually by the hepatologist with a DEXA scan being done in the first year to get a base line and being repeated every 3 to 5 years depending again on your care plan.

Our system in the UK is, I believe, different to yours so a trip back to your GP to find out what he can help you with is probably your best.

hope this is helpful to you

[DonnaBoll Administrator]

First of all, enjoy those last weeks in the Keys. We were there just as Covid started and we loved it there. So glad you had the chance to get a hep doc as well. In most instances, any GI or GP is usually reluctant to order anything, especially medications, unless the hep doc gives his 'ok'. Many members drive 100's of miles to see a hematologist. Please make sure you see him at least every 6 months, if not then at least yearly. Labs should still be about every 3-6 months. As long as the GP follows all the criteria for when scans should be done, I don't see why he can't. This is when all the docs need to communicate for sure. Is there a patient portal that if the GP orders labs work that the hep doc can see the results? I've asked Robert from the Foundation to send me the link for the EASL Guidelines for the Diagnosis and Care of PBC. Thank you for your kind words... I'm trying my best to be available and understanding of how PBC can affect your lives. I've lived it.... We can still live our best life!