bavachromatosis

We’ll see how much I can reflect on 2022 in the next few days, I still feel like I have to blog about what’s happening now so thinking about 12 months of time might have to happen after the new year, which may save me from publicly committing to resolutions that will become quickly marooned on the bava island of hopes and dreams.

But 2022 was a good year on several fronts, and one I don’t blog about too much here is health. Sometime in early 2019 I got a scare after some routine blood tests showed crazy levels of iron proteins in my blood along with high readings for liver enzymes. I was still going to the doctor in the US when this happened, and driving back from the visit with a prescription for an abdominal scan as well as gastroenterologist visit I remember thinking this this may be the beginning of something else. The levels were high enough that it was impossible for the physician’s assistant to hide their concern, and that concern was contagious. I got to thinking, “Really? The kids are still young. Never been happier at home. Reclaim is getting to a really good place. WTF?!” You can just imagine the mental dramatics of someone caught in traffic on the I95 trying to process what turned out to be a not-so-routine visit. I even started imagining I could feel my liver revolting within me like a grotesque scene from some crazy Cronenberg film. I could swear I felt something above my stomach, which was probably just the expected dread of a moment like this.

Turns out the liver scan was normal and their was no immediate cause for alarm there, so I could hang-up my Walter White plans for a bit. Nonetheless there was something behind these ridiculously high iron levels, but I’m pretty good at burying these concerns if not immediately in danger. In fact, on a visit back to the US a few months later I was telling my sister Kissy, who happens to be a nurse, and after hearing my blood levels she immediately said, “It’s probably hemochromatosis.” I had no idea what she was talking about, but damn if she wasn’t right on the mark. She even told me exactly how it would be treated (phlebotomy) and that if my heart hadn’t been damaged and/or my liver wasn’t shot already, I should be alright. In that short 10 minute conversation in her living room on Long Island I had a blueprint for what was to come—I am still quite impressed by her for that. She was better than any doctor I had seen—and funnier!

And while Kissy’s diagnosis was not yet confirmed, I was still between two health care systems, and had yet to make an appointment with a gastroenterolgist in the remaining six months of 2019. As life took over that never happened and by the time I returned to dealing with it in 2020 the pandemic hit—and I was not going back to the US any time soon. I did finally return in October 2020, but that was a Reclaim Arcade trip and I never did make the time for a doctor’s visit (maybe I was in denial?), but it was still in the back of my head and would occasionally fill me with thoughts of biological dread. 2020 was also the time Antonella and I decided not to return to the US anytime soon, so it would mean I was officially switching to the Italian healthcare system in 2021, and boy was that an awesome choice.

So, at this point it is early 2021, the pandemic was still raging with the Omega strain and things were not opening up on the medical front. I did manage to get my iron and liver enzyme levels tested again in mid 2021, and by this time the iron protein ferritin had doubled to over 2000, so I was now almost 7x over normal limits, which meant the biological dread returned more frequently in 2021. And while the pandemic was still overloading the healthcare system, by the end of that year I managed to get an appointment at a local blood bank to start giving blood given I was still feeling absolutely no symptoms of any kind (sometimes it is linked to fatigue, discolored skin, impotence, etc.). In fact, hemochromatosis can often be asymptomatic, which means if I didn’t get a comprehensive blood test in 2019 that looked at my liver enzymes and ferritin levels I might still be in the dark on this condition.

Once they saw my levels at the blood bank they referred me to a specialist in Verona, and it was at that point in January of 2022 that my sister’s diagnosis was corroborated. They prescribed a test to see if I had the gene given hemochromatosis is often genetic passed on by the parents, and once the gene’s presence was confirmed all my treatment thereafter was 100% free. Socialized healthcare means paying far less than in the barbaric US system, but full blown, idealized communist health care is when you have a rare blood disease and you don’t even pay the 10 euro visit fees. There are some in Trento who bemoan their healthcare system, but I try and assure them that if they had the US model it would only get 1000x more expensive, and as a result that much worse. Civilized health care is reason enough not to go back home. The horror the average American experiences as a result of health care costs and the uncertainty of insurance coverage is evidence of how deeply deleterious the revered practice of profits before people can be to a nation’s soul.

So, for all of 2022 I have given anywhere from 350-500 ml of blood a grand total of 21 times. That averages out to once every 2 and a half weeks for an entire year. My ferritin levels have dropped from 2000 in December of 2021 to 540 in early December 2022. Here’s to hoping by mid-January my ferritin and liver enzyme levels will be normal for the first time in at least 3 years.

One of the fun facts about hemochromatosis is it usually occurs in Northern European men, and based on some internet research Antonella did there is a hypothesis that this genetic mutation was common amongst Celtic warriors anywhere from 1000 to 3000 years ago.* This condition might have developed over many generations to help deal with the large amounts of blood loss suffered in battle. I’m sure there are some finer points to this genetic history I’m missing here, but this does kinda mean I’m a Highlander, and I can lose a lot of blood. For example, I gave blood on average every 2.6 weeks and never got dizzy once. I am a super hero—the true heir apparent to Iron Man! So 2022 was pretty good in that regard, the whole confirming my superhero status and getting carte blanche access to the Italian health system #4life!

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*The scandanavians are arguing it is actually a Viking gene, but given I am of Irish origins I hold with the Celts

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5 Responses to bavachromatosis

  1. Tim Klapdor says:

    FYI Jim – Ireland was settled by the Vikings. Dublin itself was established as a Viking city. Don’t downplay the Vikings in all this 😉 Glad you’ve got a diagnosis and treatment in place – although I’m very curious about what Jim Groom going Walter White would look like.

  2. Those pesky routine tests that turn up potentially life-altering diagnoses. Fun! Glad you’re ok-ish. And glad you have actual health care in the Do-lo-MITEs!

    I was signing up for a better life insurance plan as I approached 50, and it required a routine medical screening. No problem! I’m healthy! Blood test turned up something weird, followed up with my GP who gave me a concerned look and referred me to a hematologist. Awesome! Anyway, the early diagnosis was a good thing, and I’d never have caught this in time without it. I was declined for the life insurance though. I was the other end of the spectrum, with anemia and very low RBC levels. The anti-Highlander? Almost back to normal-ish, after treatment. Again, thanks for socialized medicine. The most expensive part of treatment was paying for parking at the hospital.

    • Reverend says:

      Yeah, the Canadians and the Italians are on to something, don’t be beguiled by the the great healthcare con—what a racket. As to early diagnosis, sounds like we had the same experience at about the same time, and it’s certainly a moment in life when the whole mortality thing starts to pop up more and more both in your personal thoughts, but also in the news all around you. I sometimes miss the Long Island coffee banter which is always a recounting of who got sick, it is usually quite morbid, but at the same time there is some sense of ritual connection around something we all must go through that is oddly reassuring, despite the often terrible details. My mom was the queen of this, every story of someone else’s ailment was both a deep concern and an education in how to gracefully deal with the inevitable with humor. That is the one of the things I miss about the Long Island clan, nothing was above poking fun and hence it all seemed somehow more approachable. Anyway, I don’t know why this comment turned into a nostalgic therapy session, but there you have it. You always brought out the best in me, Norman!

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