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Eastern PA Doctor Recommendation?


#1

I was diagnosed with PSC about a year ago and had one ERCP and am doing well.
I live about an hour north of Phila and 1 1/2 hours west of NYC. I chose Johns Hopkins in Baltimore for my doctor based on recommendation I saw here that one find “a hepatologist that is connected with a transplant hospital”. Well the doctor that I selected has decided to move on from JH and I, not being thrilled with the drive to Baltimore anyhow, am considering other options and am open to suggestions. I live in the Allentown PA area so of course, this area would be the most convenient but I worry that we are not large enough of a population here for the doctors to have seen many PSC patients. Philadelphia is reasonably close and NYC is not out of the question. I could stick with JH too and just deal with the traffic.


#2

Ken,

My 23 year old son was diagnosed in 2016. If you end up considering NYC, I highly recommend:
https://weillcornell.org/brett_fortune_md
Easy to get in touch with (responds to all my emails) and he was willing to prescribe Vancomycin, which has helped my some pretty much normalize all his liver enzymes.
Best of luck.

Doug


#3

I don’t know if anyone has used this site before, I just found it yesterday. I don’t really understand all the stats. But there are a few PA hospitals listed. https://www.srtr.org/transplant-centers/?&organ=liver&recipientType=adult&location=12839&distance=250&sort=transplantRate


#4

Thanks Doug!


#5

Thanks!


#6

Hi Ken,

We were going to UPenn as it was in state for us initially, in our specific scenario it was fumble after fumble. We’d go in for a scan to do a procedure & not hear back for 3 weeks then hear we’d been changed to another doctor that was part of the cancer team (he has never had cancer). We were concerned. Since arriving at JH it’s been much different. We were told the team there does around 120 liver transplants a year & around 20 a year are PSC. We’ve never been moved to a different doctor or had a hard time contacting in an emergency. Everywhere should be like that but I don’t think Philly could make that promise. For instance, the Philly GI refused to refer my husband to the Hepatologist, said it was pointless for the time being (even though he’d had a stint in for 4 months at the time of that appointment and that’s time to schedule).
It does seem related to the Philly culture/communication problems as the GI we saw did his fellowship at JH & left for the Mayo Clinic a month after we left his care. All signs point to him being a good doctor but without a solid team or patient review to make sure clients didn’t slip through the cracks.


#7

Thanks for this information CER87. This definitely helps.