I am ready to get to a few hypotheses of my own. Why did I get CTEPH, the finale. I welcome all readers to comment below, especially if you have ideas about this strange illness. My primary question: How Did I Mess Up My Body and Get CTEPH?
Funny how my mind went through stages of fear and rationalization as I learned about CTEPH. At first, I thought “they will give me a blood thinner and dissolve the clot. Not great, but I can do that.” Then I learned that it isn’t a clot anymore, because after a few weeks it fuses with the artery. Bummer.
OK, medication won’t do it. But they could easily put a right heart catheter in through my internal jugular vein. Heck, I used to do that myself back in the day. They can put it in, blow up the balloon, and pull it out. Doesn’t even need an incision! I asked my pulmonary doc and he said “if only. No, it is part of the vessel now, and a balloon would tear a hole in the artery and you would die very quickly.”
Then I learned about SPECIAL balloons that can be guided right to the narrow area and expanded to help open things up. They do that in Atlanta, but only for people who are not surgical candidates, because of the high risk involved. Also, the patient must go back every couple weeks, maybe ten times, to get the vessels opened up.
More searching, and I found a bunch of devices that sounded like Ronco products (ask your parents if you don’t know). The Flow-triever, The Helix, The Cleaner, The Penumbra… all combinations of a suction catheter and a little thing that tears up the mass in the artery, such as a spinning helix or a little nibbling device. ALL were for non-surgical candidates for the same reason – because they are not as safe, and do not work as good, as an open endarterectomy.
I resigned myself to getting my sternum split. One comfort: “at least it isn’t open heart.” But it IS. Then “at least they don’t need to do circulatory arrest!” I’d seen a couple of those cases in residency, in people with aneurysms of the ascending aorta. In those cases the surgeon only needed 20-30 minutes to sew in a graft. Then the kicker… I will need circulatory arrest for HOURS. By that time I was used to all of the other things, so it wasn’t that big of a deal. Plus, frankly, I figured I’d be unconscious, probably die, and I wouldn’t suffer.
You all know it from there. But a question remains: why did this happen in the first place? Can it come back? Will my kids go through this? They took more than a dozen tubes of blood in red-top, blue-top, yellow-top, and other tubes I’d never seen before. All of my clotting tests were normal. My metabolic tests and chem panel were normal, as were liver and kidney functions. PSA was normal. Abdominal and pelvic CT – normal. Ultrasounds of my arms and legs and pelvis were all normal.
The one comment I noted was that it seems to run in families, and I have a family member who has had repeated blood clots in his leg.
I started thinking that I must have done something wrong. I rarely drink water – is that the issue? No. People who live in deserts do not drop dead from this. I was very ‘dry’ on my heart cath and I should drink more water, but that doesn’t explain why.
Oh boy… my drug use 20 yrs ago. After all, I used IV near the end, and one function of the lungs is to catch bacteria, air, or clots that get into a vein. “I don’t think so” my doc said. That was a long time ago, and that behavior is not associated with this disease.” Besides, I thought, I was obsessive about using alcohol wipes, clean paraphernalia, and only pharmaceuticals, never ‘street drugs’ from a dealer. My use wasn’t that different than a person getting meds in an IV. I should say – it was VERY different morally. But not that different mechanically.
I replaced the ceiling in a cottage built in 1921, back in the 1990’s. After driving around with the old tiles in the back of my jeep, sometimes with the wind blowing through open windows, this genius took them to an asbestos abatement company. They were asbestos, but ‘good asbestos’ (Amphibole) rather than ‘bad asbestos’ (Chrysotile). No known association, and those particles usually cause problems in the airway, not in the blood in pulmonary arteries.
I’ve had many people suggest it was caused by COVID, the COVID vaccine, or both. But the surgeon believes I have had this for at least several years, and that lines up well with my history of dyspnea, which I first noticed while hiking Mt. Piestewa in Arizona in January of 2020. I’ve climbed to the top many times over the years, the first in 1993 after my oral board exams at the Hyatt at Gainey Ranch. Those were the days….
When I tried the last time, in 2020, Nancy slipped, fell, and tumbled dangerously close to a drop-off. But I struggled to breathe, even after I stopped laughing (listen, I’m JOKING!). I made it 2/3 of the way and had to turn back.
It has been slowly downhill since. I walked two miles most nights last summer in our hilly neighborhood. This spring I could barely do one mile. I did the three mile walk at Walleye weekend in June but it was very flat, and I huffed and puffed the entire way. Nancy kept saying “just make sure we don’t finish last!”. We were close.
You ask, “why did you make us read the post about the dumb null hypothesis??” I don’t know. Most docs have a sadistic side, as you know. Seriously though, MY hypothesis is that something caused me to develop CTEPH; that it wasn’t just random chance. So our null hypothesis is that my illness was a random event, caused by nothing. We tried to prove that by looking at every way I was different from most people. We call those ‘variables’. We came up with nothing, except a history of blood clots in a relative. The null hypothesis, that my illness was not caused by anything, has not been disproven in my opinion.
That means that for now, my own hypothesis is not supported. Maybe this happened in result of nothing beyond bad luck. There are likely other variables we haven’t considered and maybe they will help provide answers at some point.
Thanks for playing along. For the name of a new blog I wanted something that is a little funny, something that conveys my interest in science, and something that reflects my medical training. I thought of med school when those of us in the MD/PhD were called (lovingly I’m sure) ‘mid-phids’. So today I bought midphid.com for $18. If I decide to use it, I will transfer everything there, including my old posts at ‘patienttimes.com’ and some other articles from different sources. If you all HATE the name, please let me know!