Doctors and Dragons: The Adventure Continues

Read Part 1 here

Third quest: selecting a specialist

Why I chose my gastroenterologist, and why I chose a gastroenterologist over another specialist, was important. As a vertical transmission, my virus had been in my system for decades and it wasn't just affecting my liver anymore. Hep C is a systemic virus, meaning sometimes a hepatologist is useful, but he/she will ultimately have trouble with someone facing  extrahepatic manifestations.

These are, generally, the types of doctors who treat hep C: HIV Specialists, infectious disease doctors, hepatologists (liver specialists), gastroenterologists, general practitioners/primary care physicians, and transplant docs (although they usually will coordinate with another specialist).

Some doctors are also better at getting around a denial claim. So when denials aren't a doctor's strong suit  and if you're searching in your area for doctors who are more likely to approve hep C medications, this is a searchable database of doctors who treat hep C.

When my liver was in F1, I saw a GI every two years or so, my hepatologist each year, and my GP with more frequency. As my liver damage progressed to F3, I started to need my GI  more than my hepatologist, as frequent hospitalizations and outpatient surgeries (like endoscopies) required a more comprehensive approach toward my entire GI tract. Infectious disease doctors, and HIV specialists, can help with treatment, and with symptoms much like a hepatologist. A GI Doc usually can also perform endoscopies which are necessary if you develop esophageal varices. But when it gets to F4 (End Stage), a GI and a transplant doc are going to be the team that keeps you alive.

Final quest: Make a list and check it twice!

Post transplant: In addition to my GI, transplant doc, and general practitioner, I had a dermatologist and a physical therapist. Technically, there were lots of secondary surgeons and other doctors who would step in for outpatient operations, but largely my team was the same. Make sure you have researched a doc in each area which you might need.

Your healthcare team may include:

  • General practitioner/primary care physician
  • Hepatologist, infectious disease specialist, or HIV specialist
  • Gastroenterologist
  • Physical therapist (If you get to F4, start looking for these too)
  • Transplant doctor
  • Dermatologist

Don't forget to bring a pen, because all of this questing is going to be lot of paperwork over the years. It's a different kind of DnD adventure. But either way, you get to slay a dragon, and that's the adventure of a lifetime.

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