PWD w/ PE – Part 2

Okay, so apparently ending the last post with “to be continued” may have caused some undue panic…but to those of you that reached out to make sure I was okay, thank you. You’re a kind bunch. And just to clarify, I’m not dying…at least not at a substantially faster rate than I was before.

So back to the story…after reviewing the CT test results and considering the fact that I’d been walking around with this for 2 weeks, my doctor thankfully decided that admitting me to the hospital wasn’t really necessary. After all, all they would do is put me on blood thinners and then I’d sit around waiting for it to work. I was started on 2 different types of medication (fun fact, btw, “blood thinners” are more accurately anticoagulants…they don’t really thin the blood, just reduce the ability to clot). I was started on 1 Coumadin pill (easy enough to swallow), and twice daily injections of Lovenox. Since I’ve been injecting things for, oh…21 years or so, my doctor figured I could handle this on my own. And I can, but that doesn’t stop it from hurting like hell. For you diabetic folk out there, it’s basically like giving yourself a Glucagon injection twice a day. Here’s a shot (get it?) of that friendly needle:


It’s been 9 days so far and we’re still getting the dosage worked out (up to 3 pills a day now), so I’m becoming good friends with the folks in the lab at my doctor’s office. Apparently I’ve become a bit of minor celebrity around there…one test they ran on me to check for all sorts of genetic clotting disorders required 13 test tubes of blood…when I came in the next day and only had to do 1 tube, I made a comment to the nurse about the previous day’s test and she said “oh, I heard about you!”. Oh, and the insides of my elbows now look like Lance Armstrong before the Tour de France a heroin addict’s, so there’s that.

Unfortunately, we still don’t know where the clots came from, and my doctor seems to think we may never exactly figure it out. I don’t have any of the common genetic or biological clotting issues, and all of the ultrasounds and other scans have come up empty. Unlike pretty much everything else, this isn’t even one of those “more likely to happen in people with diabetes” things. Right now the leading contender is a clot that somehow formed due to severe dehydration after the stomach virus I had a month or so ago.

Thankfully at least as far as diabetes is concerned, things have gone pretty smoothy. The medication doesn’t appear to be affecting my blood sugar (although the lack of exercise isn’t helping things), and aside from taking longer to stop bleeding from the numerous holes I’m poking in myself daily, things are going pretty well. That’s not to say I haven’t tried to find answers to diabetes & PE questions online, but finding information on those 2 conditions in combination is a bit like hunting Captain Ahab’s white whale.

My medical team has been great though. I’m not saying getting a potentially fatal condition is the best route for everyone to take, but it does seem to get you better than average treatment from the healthcare community…I got a direct call on my cell from my endo on the day of the diagnosis, and my PCP has actually come out to the waiting room several times to talk to me while I was there for lab work. I’d gladly trade “the star treatment” to be healthy, but it is nice to feel that they’re concerned.

So that’s pretty much where we stand now. We know what’s wrong, but we don’t know why, and we don’t know exactly when it will be better, but we’re working on it. It sounds like eventually I’ll be back to 100% with no permanent issues, but I know it’ll take longer than I want it to. In the meantime, thanks for reading and I appreciate the support. Talk to you soon!

1 comment so far

  1. Scott K. Johnson on

    Wow, dude! What a shock!

    I’m glad that you are doing alright, but it must be frustrating to not have any answers about how and why this happened.

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