– In which Dorn’s Mystery Illness is revealed. Sort of.
(This concludes the story started in Part 1, here).
ER VISIT 3.
t was a record-setting year for rain in 2018, and by summer our yard was saturated. Living right on the shore of the Chesapeake Bay, with the hills that in other places make up Calvert Cliffs right behind us, we were seeing a torrent coming down onto or property every time it rained, with more precipitation in the forecast. I was busy trying to divert some of this wash off of our back yard by digging a berm and supplementing that with sand bags. It was heavy work, and by the time I was done I was aching all over.
Big doses of Motrin helped.
I slept hard that night, but woke up in the middle of the night feeling funny. I was dizzy with cold sweats, faint-headed and a bit disoriented. I’ve never had a heart attack, but I didn’t want my first to be my last, so we high-tailed it to the emergency room again!
It wasn’t a heart attack, but the illness I was suffering from did seem to somehow involve a lot of bleeding into my GI tract. So they sent me home from the ER, with instructions to check in with my gastroenterologist (and my cardiologist, just in case).
The next day, I got an appointment with my GP, Dr B—. I told him I had already scheduled a colonoscopy in a couple of days, and a visit with my cardiologist a couple of days after that. He hit the roof! “You can’t go around getting a colonoscopy, or any other invasive procedure, until you get your heart checked out! Even if it wasn’t a heart attack, you still need to clear that first!!” When he wasn’t convinced that he was making his point strongly enough to me, he interrupted my consult to call my gastroenterologist himself, and tell him not to poke me with anything until I’d gotten a clean bill from my cardiologist.
That’s what I like about Dr B—: he cares enough to get worked up if something’s going on that puts me at risk. The laconic country life is great for most things, but I had already learned (in part 1) that I like a little nervous tension in my medical relationships. I also like that if Dr B— doesn’t know something, he’ll tell me rather than pretend that he does. (What I don’t like so much is that there are things I wish he knew that he doesn’t. Like what was wrong with me.)
Anyway, I got a bunch of tests and scans (in the right order, with the cardiogram first), but nothing showed what was causing the GI bleeding. Over the next few months as these tests progressed, I slowly recovered, until finally my doctors and I concluded that the original culprit was probably the Motrin I took, so let’s cut that out of my diet completely, and hope that this Mystery Illness was a one-time thing that won’t plague me again.
That strategy worked–for about six months.
ER VISIT 4. When Kathleen and I retired this last winter, we had planned on taking a road trip up the coast and into Canada as soon as we could. I had some knee damage from an old injury that made driving longer than an hour or two painful, so I scheduled an arthroscopy to fix the internal damage.
I had the outpatient procedure in July, almost exactly one year after the onset of what I referred to as “the Motrin incident”. The work seemed to proceed without complications, and I was assured I’d be walking by the end of the week. That night, though, I went into shock–I suddenly felt extremely cold, and couldn’t stop shaking. Kathleen said it looked like a seizure. So, back to the ER we went!
There they found that my blood pressure was so low that they had to strap me to a bed upsidedown-ish, with my head lower than my feet. I had had extensive bleeding into my GI tract again. Well, so much for the swear-off-Motrin-and-hope-it-doesn’t-recur strategy of medical management. It was time to start the care and diagnostic cycle all over again, and this time, I wasn’t stopping until I knew exactly what was causing the Mystery Illness (and then fixing it)!
I had my trusty GP Dr. B—, a GI specialist, and a blood specialist all working the issue. We did all the standard and some not-so-standard tests and scans. Again. A pattern developed: see the doctor, suggest a test that might inform us, wait for the scheduled test appointment, wait a few days for the results, make a new appointment with the doctor, find out that test didn’t tell us anything useful, repeat.
Meantime, the bleeding had stopped, and my anemia, which had plummeted to about half of minimum “normal” blood count values, slowly started improving again. I was glad to start feeling better, but worried that the longer the investigation failed to find the cause of my illness, the more healed I would be, and the less likely that future digging would spot it.
Until the next incident, that is, which I was now reasonably confident would occur, sometime when my body was stressed. What frightened me was, what if the stress that triggers the bleed is something that has already put my body into a weakened state? Like a car accident, or emergency heart surgery?
I started to despair that, despite our best efforts, this incident might also end like the first, without knowing what caused it and so not being able to prevent it or keep me safe when it happened again. It was time to abandon my attachment to the laid back ways of country medicine, and go find some hot-shot city slicker doctor with some new ideas.
I found Dr G— at Johns Hopkins Department of Gastroenterology and Hepatology, and presented all my symptoms, test results, specialist notes and speculations to her. You can picture my relief when she said, “Oh, it looks like you have * . I see that all the time. Let’s set you up with this specialized test to confirm, and if that’s it, we can fix it.”
This test is still several weeks away, and if her prediction is confirmed, there will be treatment procedures to undergo after that. But if the Illness isn’t banished yet, at least I have hope that the Mystery is. Maybe now I can think about something other than the next scanning or scoping (like planning that road trip!).
So that’s my story, at least to this point. Thank you, as always, for listening.
Thanks!
Dorn
9/10/2019