PBC care in the US/ Transplant times/ success rates

[IAmTheGlue]

So… when I was diagnosed we lived in Indiana and I was getting care at IU (misdiagnosed as AIH/PBC overlap) but we were obviously scared/ sought a second opinion at the Mayo Clinic in Jacksonville, FL. 45 days later we were moving to Central Florida after purchasing a house we had never set foot in. My husband did a corporate transfer and here we are. At the Mayo Clinic they said PBC/PSC overlap syndrome

It’s been 4 years and I’m relatively stable. I go to the Mayo Clinic twice a year for MRCP for monitoring for HCC as I’m in early cirrhosis and I have a small, stable tumor in my bile duct. I love my doctors. I have full faith in them. We moved here with intention of being between Miami and JAX for the purpose of dual listing if I need a transplant.

So…. here is our delima… housing prices in Central Florida are soaring so we could sell this house and make enough profit to pay for an entire house elsewhere which… that’s obviously tempting. My husband can transfer literally anywhere with his company. I don’t really want to leave the US though.

So, any thoughts? I am scared to leave here. We moved here with intention but fully owning, paying cash for a house opens up a lot of other options for our family.

Thanks for listening/reading.

Stay strong.❤️

[Floridachick]

I am also being treated at the Mayo Clinic in Jacksonville. Who is you physician there?

[IAmTheGlue in reply to Floridachick]

I see Dr Raj Satyanarayan. They just call him Dr Raj. I absolutely hold full faith in him and the Mayo Clinic. He has been amazing. I cannot say enough good things about him.

I have been sick about moving. I told my husband last night, maybe we need to look at it like “thank God we moved before housing prices went insane”? I love it here. I love the Mayo Clinic & my PCP.

But if there were somewhere better we could be I would consider it:

[Michi1]

The "mother ship" so to speak for PBC is Mayo Clinic in Rochester, MN. Minnesota is cold as "f" in the winter but it's a great place to live. My guess is it's cheaper there than anywhere in FL right now, but without the tax advantages. I'm in Miami and we have an exceptional hepatologist here who trained at Mayo in Rochester (Dr. Cynthia Levy) but housing here costs more than Orlando so if saving on housing is your goal you wouldn't find that here.

[IAmTheGlue in reply to Michi1]

Thank you for your reply. That’s what I was thinking too. I think we are going to just thank our stars we bought in before the housing prices went crazy.