I’ve written versions of this before, and I might still update it if something changes or I remember something. People are fascinated with the details of my illness and its cause and treatment. The story of it is pretty interesting I suppose, and we’ll get to that in another post or posts when I can. The illness itself is pretty boring, or I might just be bored with it because I’ve had to talk about it so often. I’ve also always been annoyed at people who only complain about their health, although I understand that a little more now. Still I think you should probably know the basics before I reference it all the time.
My doctors all disagree with each other over almost every aspect of this, but here’s the basic rundown.
In late 2021 my liver failed. They all agree that this is generally bad. I don’t disagree. This, lucky for me, happened on the same day I had an appointment to get checked out for Lyme disease since I had been feeling worse than usual after being bitten by a tick.
My primary care physician hadn’t been seeing me long, but since I originally sought treatment for anxiety, depression, focus issues, high blood pressure, and a too-heavy reliance on alcohol to medicate all of those things. I had been improving in that regard, but I was still not in the healthiest of places. So he did the math and gave a diagnosis that I don’t blame him for: cirrhosis, probably alcohol related.
It sounded a bit odd to me since I was sober at the time and had been for a while, and labs had come back showing improvement and not deterioration. He chalked it up to damage already done that just needed a kick into total failure by a new medication or something. I had just started a new blood pressure med that was liver toxic, and had been on other prescriptions that can cause acute liver injury.
Anyway my liver happened to go into full failure the day I had an appointment with him. I mean the day of. My eyes jaundiced sometime between me putting my contacts in that morning and my appointment for Lyme screening. He sent me straight to the hospital and I spent five days there. By then they were already fully on the alcohol cirrhosis train, but did test for tick related illnesses while I was in. All of them came back negative.
They decided I very likely would need a liver transplant within a year and so we started that whole process.
I was satisfied with this explanation, especially since the tick tests came back negative. My wife, however, was not. She found a lot of my symptoms correspond to a lesser known tick-borne illness called babesiosis, which is caused by parasites that eat red blood cells and other things. I didn’t buy this, but I do like making my wife happy so we pressed the doctors to test for that specific parasite. They also didn’t buy it but they did it anyway and it came back negative.
For me, that was that, although I wish it hadn’t been. The treatment plan was to do what was necessary to live long enough to get a transplant. To me, it didn’t really matter the cause because the basic facts were my liver wasn’t working, it looked unlikely to get better, and I needed a new one.
Now, I don’t know if you know this, but liver failure is not pleasant to live and die through. It’s a cliche but it’s really one of those things you can’t possibly understand unless you’ve lived through it. I just wanted to eliminate any complication or confusion that might get in the way of me getting a new liver and feeling better right-the-hell-now. Babesiosis was too rare to take seriously, and besides, they had already tested for it.
My wife never quite gave up on it though. She noticed coincidences and developments in my condition that weren’t adequately explained by alcoholic cirrhosis. There were abnormalities in labs that showed me getting worse when I should have been getting better. I had symptoms that are generally not associated with liver failure. Also I was 34 at the time, which is an extremely young age to die from alcoholic cirrhosis. I would have to have been drinking an insane amount of alcohol all of the time for basically ten years - an amount that would have been impossible to hide even without holding down a marriage and a job.
You can probably see where this is going. She continued to research and found that many labs for tick-borne illness are unreliable at best and absolute garbage at worst. She found one of a few labs that exist that have more advanced and robust testing and ordered a kit. She persuaded me, kicking and screaming, to ask my doctor to give me the test, and so I dragged him kicking and screaming to do it. So we did it, had a good laugh, and moved on. Women, right?
So of course the test came back positive. Super positive. For a strain of parasite not seen as often on this coast. It would be incredible, but it’s RNA was in my blood and I had a huge amount of antibodies built specifically to fight that parasite. There is absolutely no way to have a false positive for those things.
The thing is, babesiosis looks like a lot of other illnesses. For some it looks like a cold or flu. For others it looks like fibro myalgia or depression. For some, like me, it can damage your liver and create the appearance of diminished liver function from other causes like, say, alcohol. Doctors also have almost a pathological hatred and denial of tick-related illnesses, and insurance generally doesn’t cover the diagnosis.
Detecting it before my transplant was a stroke of insane luck on my part and the result of crazy love and determination from my wife. If I had gotten the transplant with this illness undetected, I would have had to go on immunosuppressive drugs - which would have killed the one thing keeping the parasites at bay, and thus, me, and nobody would have been the wiser. Just another failed transplant. Happens all the time.
Anyway I got treatment for it - antibiotics and anti-parasitics. Or I should say I’ve been getting very inadequate treatment for it. To have a chance at killing it dead the docs would have to put me on much more than what they gave me.
That’s kind of where we’re at now. In a lot of ways I’m getting better. In a lot of ways I’m not. My liver, while functioning better, is still not recovered and theres a percentage of function, how much I’m not sure, that I’ll never get back. Ammonia is still building up in my brain rather than being turned into pee by the liver like it should be, which causes a kind of dementia which may reverse and may not. I am on in insane diet that has robbed me of all but the blandest foods. I’m only allowed 1.5 liters of liquid per day. Not water, liquid. Popsicles count. Soup counts. I have to take diuretics to ensure that my abdomen doesn’t fill up with fluid that my liver can’t process fast enough. I get fatigued easily and I lost most of my muscle mass. I get swelling in places I shouldn’t and, uh, don’t in places I’d like to. I can’t work yet in the traditional sense. And my liver can still fail if it wants to, along with any other organ who has had to pick up the slack.
It’s still scary, there are a lot of frustrations and unknowns, but generally I’m feeling better and hope to continue to. Like everything else there’s more to this but that’s generally the context you need if I shorthand it later.