hcv stories

Mathew Scheiner
Oberhofer, Tropic of Pisces, Mon Khmer
DISCO DIVA.JPG

Chronic Illness:
Hemophilia, Hepatitis C

How long have you had Hemophilia and Hepatitis C?
Hemophilia you are born with, and I was exposed to Hep C at about five years old from a contaminated batch of plasma for treating my hemophilia (kick ‘em while they’re down). At least I was luckier than lots of other Hemophiliacs, who ended up getting HIV in the same fashion. Historical note: Blood donations [which are the source of my hemophilia treatment] were not being properly scanned for contaminants until 1987, hence the nationwide spread of HIV and other blood-borne illnesses in that decade.

How does it affect your professional life?
Touring is “less fun” when you have to worry about “did i put enough ice in the case to keep the meds cool until we get across the Mojave?,” or “Hey guys can we stop at the hospital so I can dump my sharps container?” However, people in other bands think you’re pretty cool when they walk into the green room and you’re sitting at the table with a tourniquet on, a needle in your arm and a 60-cc syringe in hand. So, there’s that.

How does it impact your personal life?
Personally, my hemophilia (a genetic blood-clotting incapability, for those who don’t know) causes 99% of its problems for me in my ankle, so I can’t go running or play soccer anymore. I can’t even go for very long walks, I just bike everywhere. Which is why I fought hard to put the bike rack on the van before going to SXSW. And the Hep really hadn’t affected my personal life until I started treating it. Then, I had to give up alcohol and every drug, except grass and certain prescriptions. Mildly awkward social situations have come of this.

Outside of your professional and personal dealings with Hemophilia and Hepatitis C, what else would you like others to know about it?
My health insurance costs double my rent, but this year alone they have shelled out over $150,000 in the interest of keeping me alive and well. When I neglect to clean my room for a few days, the scene generally includes empty vials, used syringes, bloody needles. I have an impressive collection of fancy tourniquets from around the world.

Even though the circumstances under which I contracted hepatitis were unique to my being a hemophiliac, I recommend everyone get tested. I’m just past the halfway mark of the treatment for it and (knock on wood) am expecting to be cured by mid-March. Which is great, because although I’m currently not in a state of health emergency, I’ve already had the virus for over two decades and my liver would start breaking down in a few years. I’d just like to add that despite how much of a bummer a chronic illness may be, we are so lucky to live in modern times with modern medicine. Learning to stick myself at 14-years old, and moreover learning about patients twice my age having to assimilate into very long treatments without any certainty of a light at the end of the tunnel made me realize that we all have a high threshold for the integration of unusual things into our daily lives in the interest of survival…. reposted from paste magazine 2012….

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