Living with bad things - Hemochromatosis

Christopher Paolini, of the Eragon series fame, wrote a book of short stories a few years back that I enjoyed - The Fork, the Witch, and the Worm. Overall, the book was pretty good, but there was one story I really enjoyed - The Worm. A dragon moves into a valley and attacks a village. A young woman witnesses it killing her father and vows revenge. Over the years, she becomes a very accomplished wizard, but all efforts to combat the dragon failed and it would periodically descend on the village to feast on the people. Then, one day, a worse terror enters the valley and the dragon does battle with it, not to defend the town or its people, but to defend its territory. But, in the process, the dragon actually saves the lives of everyone in the town. The woman eventually realizes her limitations and learns to accept the situation she was in, finding healing and happiness as a result.

I thought this was a good metaphor for life. There are bad things out there and sometimes life sucks. But, that doesn't mean the bad things were targeting you and it doesn't mean there aren't things that are even worse. And, sometimes, the bad things can actually bring something beneficial. I have a personal story as an example.

I have a genetic condition known as hemochromatosis, a condition where your body stores too much iron. It attacks the joints, body organs, and can even damage the brain. The treatment is pretty simple - take blood as needed. This reduces the amount of iron in your system. Fortunately, I have a very mild condition. Other people have cases that are so severe it makes their skin turn yellow.  Unfortunately, I did a couple of long deployments in the Navy to Europe in the 1980s. The problem with that is that there was a outbreak of mad cow disease and now they won't take blood of anyone who was there for six months, or more, which is the standard length of a Navy deployment (although usually longer than that). I had, unknowingly, been self-treating my condition by donating blood. Suddenly, I could no longer donate blood and, at that time, my condition had not been diagnosed. The iron began building up in my body.

After many years, my military doctor was curious about the high iron levels in my annual blood tests and and my complaints about joint pain, so she sent out a sample for genetic testing and I came back positive. Once diagnosed, they began treatment and I gave six units of blood over a seven week period. They told me I could lose a lot of blood and would be okay. What they didn't tell me was how painful that last unit would be. I barely made it home before collapsing on the couch and sleeping for several hours. But, it worked and my joints began feeling better in the following months.

This diagnosis also triggered a series of organ tests to see if any damage had been done. It had been nearly thirty years since they stopped taking my blood for donations and they were concerned about the long-term effects. Everything came back clean but then I was sent in to have a sonogram taken of my heart. They told me there was a very small chance of damage, but it was enough that they needed to investigate. In the worst case scenario I would need a heart transplant. Small chance, but enough.

So, I showed up for my appointment at the scheduled time of 6 AM and had to wait for the technician to arrive. That's the way military medicine works. If you're there on time, you have to wait. If you try to outsmart the system and show up late, they'll cancel your appointment and you have to start all over. So, I was there on time, knowing I'd have to wait, and they told me to take a seat in the waiting room. I was the only person in the room and fell into thoughts about being sorry for myself when, after quite some time, I realized I wasn't the only person there anymore. The room had quietly filled up. I looked around and noticed I was the only man in the group and all of the women were wearing hats or wigs. There was a sign directly in front of me that said the waiting room was reserved for chemotherapy patients on Tuesday. It was Tuesday. Suddenly, I realized that I had nothing to complain about and stopped feeling sorry for myself. Even a little ashamed.

I went in for my sonogram (it was seriously cool watching my own heart beat on the monitor) and came out with a clean bill of health. I have often wondered about those women in the waiting room and hope they all made it.

So, now, I get an annual blood test that indicates how much iron I'm storing and they take a unit when necessary. I still can't donate blood so they burn it. When I asked what it looked like, they told me it burns a very pretty blue color. 

That's my dragon - or at least, one of them. And, just like the story, this dragon has some benefits and may have saved my life. 

I caught COVID very early in the pandemic. No one had yet died in the US from it when I first came down with the symptoms (the evening of February 25, 2020 - I remember it precisely) and we didn't even know it was in Texas yet. I got sick - very sick. I mean, probably the sickest I've ever been. If I tried to lie down the coughing would get so severe I couldn't sleep and had to sleep sitting up for about a month. I could feel the fluids moving in my lungs when I moved about. I had terrible vertigo and the fatigue that hit me was so mine numbingly painful I would simply sit back where I was and sleep for two hours, or more. I had severe brainfog so bad that one day I realized I couldn't even remember the names of my siblings. This continued for more than three months. Curiously, I never had a fever and I never lost my sense of smell or taste. Despite the fluid in my lungs, I never had problems breathing and I never felt my health was at risk. 

Looking back, knowing what we know now and after talking to doctors, it's clear I should've gone into the hospital. I came out okay, but it could've easily gone the other way. However, considering the amount of fluids in my lungs I think they probably would've put me on a ventilator and I suspect I might never have come out again. So, what saved me? My dragon - hemochromatosis. It turns out that extra iron in the system improves my ability to breathe. I can hold my breath for a long time and when I was kid I always won the breath holding contests with my friends. Every time. 

My hemochromatosis may be a bad thing, but it wasn't targeting me - it was just one of those things. There are worse things in the world, as we've all seen. And, as it turned out, there was actually some good from it. 

Just like the woman in the story, I've learned to live with the bad parts of my dragon and am grateful for the benefits it brings.