Monday, June 2, 2008

Medical (Unsolved) Mystery

Today J., who took me to the doctors' office (notice the plural), mentioned that her husband watches a show called Medical Mystery every night (the name of my imaginary board game!). Medical Mystery is on the Discovery or National Geographic channel, she wasn't sure which. I'll have to look for it. My husband joked later that they could make a new version for me, more along the lines of Unsolved Mysteries.

My passing out could definitely be benign and pain related. Or it could not be benign and be something else.

Spurred on by my my PT's congratulations last week that I wasn't taking pain medicine (I thought, wow, "I'm not?", had forgotten to mention it), remembering just before I was wheeled off for surgery that I was allergic to latex, and forgetting the sulfite allergy a few procedures ago, I finally grumpily realized it's getting dangerous for me to rely on my memory alone, so I used an online program to start recording allergies and medications I've taken/do take. I also realized as my medical history becomes extremely complex that I forget about some issues such as having chest pain in March (I happened to reread my blog), so I should keep a few concise notes. I can still control the rate of info, but it's more accurate and less difficult for me to remember something within a finite appointment. I didn't today mention the aphasia or alpoecia, for example, though the aphasia was obvious to me today and to my friend, who hadn't seen me like that before (was pretty bad when I was first in the car). Pain and lack of sleep from pain, I think.

I saw two cardiologists, not sure why, maybe because the newest one is well, newish? I can think of several explanations, not sure. It was a bit like being interviewed by Thing 1 and Thing 2, or playing good cop/bad cop. I kept my story straight, but since it was a long one, it was exhausting to play again. Maybe doctors win Medical Mystery more often when it's a multi-player game. Ha, but I brought J. in with me, so we're matched. I was glad I had J. with me because I forgot a few details later. Even she said she felt like she needed a tape recorder to remember it all. This is the gist of it, a long way of saying, "we don't really know what's wrong with you, if anything, but here are tests that open up about 75 possibilities":
-echocardiogram because of possible relation to rheumatic issues, to check squeezing function of heart (this is what I referred to as the "ejection fraction," but okay, the first doctor can use less technical terms if that's easier for him)
-recheck of most bloodwork to make sure there's no occult bleeding ("hidden bleeding," the second doctor called it), no subclinical thyroid issues, no low electrolytes (ha, with all the fluid they pumped into me postsurgery), no major anemia, etc. The only anemia I probably have is from having blood drawn all the time.
-14 day monitor that both triggers itself and that I can trigger, to check for arrhythmia
-possible tilt table test after these depending on other results (I didn't admit I know what this is).
-possibly looking at spine issues since it's possible that there could be some postsurgery compression that's a more major issue. Cardiologist #2 said this is an easy test (J. remembers this, I don't, it would have to be redoing nerve testing).

I had the echocardiogram and labwork done today, but they'll make me wait a month to find out as part of a test of how medical mysteries perform under stress. (Actually they're waiting to get the heart monitor test results back at the same time. I assume they'd call earlier if there's something more drastic found.) This is in such contrast to Elizabeth's experiences with a far more severe condition that I feel additionally bad for her. This is almost too easy for me to get everything I need done. I don't understand it. She needs more help in this regard than I! Too much unfairness in this world.

Cardiologist #2 said that I definitely need to go to the ER immediately if I pass out again for my own safety. I'm not sure what the concerns are, but he was emphatic about it, despite the possible costs and waiting, which he acknowledged. He said it was for my own safety and no other reason.

J. said she was impressed by my medical knowledge and said she learned a lot. She said it was very helpful that we made a list of representative blood pressures/heart rates when I felt most dizzy, compared to my usual blood pressure/rate. She said my details were good, that she said she would have said, "I felt dizzy and passed out," and would have been unable to remember the other information. I was glad for her company. It was nice to wait with her and made the time pass more quickly. I've been a little desperate for adult company!

This afternoon I went to my daughter's awards ceremony at school. I realized how many friends we have from this context alone. Many, many people were offering to give us additional assistance as we need it, with driving, errands, foods. I think some of them are going to get hurt feelings if I don't call on them! So I do need to rely on them. Plus it would be good sometimes just to have them bring their kids over to play with ours or to take them out somewhere, just everyday errands and tasks, since I can't take them out so much.

The vacuuming is done and bathrooms are clean, but my husband does need a little more of a break since he is working continuously all the time.


Elizabeth McClung said...

I am glad, since some posts ago that you were saying you wish you could have some help that the help is coming. Congrats on your daughter's awards ceremony (can I ask what for?). I am confused on two cardiologies (teaching hospital) but would defend with teeth my right to tell anyone that they were looking for (insert Vincent Price playing an organ) OCCULT BLEEDING in me. I think I would bring it up at every test.

So any sign of that..(pause)...OCCULT BLEEDING yet?

And that is why even when I am TRYING to be nice, most specialists find me a big fat pain in the ass. But still, OCCULT BLEEDING!

I though your ejection fraction was okay? Wow, this is kinda of serious/interesting. What about backflow showing up on the echocardiogram? (see, even I can find problems they didn't mention! What are friends for. No, that is only my things, because of Marfans, you don't have marfans - you have a case of POSSESSION: a) Exorcist head spin in tub, b) possible OCCULT BLEEDING c) I don't know but I can't to fill this space. I know a good albiet dodgy priest with the exorcist kit if you are interested.)

Seriously, I hope my strange humor doesn't offend, I think you did a great job keeping track of everything. I hope they find the problem soon - and postsurgery compression makes sense, nerves are funny things (haha!)

FridaWrites said...

Your humor definitely doesn't offend--I am in dire need of such good humor.

I'm thinking 2 cardiologists because it's not very straightforward and there are so many possibilities. Occult bleeding could be postsurgery (rare from spinal, though could happen), taking too much pain med over time and messing up stomach lining, bowel problems. That should show up on bloodwork. Hopefully it's not that, because a lot of not fun and phobia inducing procedures could result, though probably quickly fixable.

My ejection fraction is great--for someone much older. It fits in the normal range, but not in the normal range of someone my age, even in my 20s when I was in excellent shape. That's probably hereditary in my family and just something to watch over time. The backflow on the echocardiogram in the past was from increased blood volume from pregnancy and is annoying as hell but not life threatening--I'd be interested if I still have it.

I think my sister has Marfans, but I don't. She has the reverse breastbone, specific bone issues, etc. I never remember to look at her finger length/bendability when she's with me.

Well, an exorcism should cure me then. I'll have to add that to my list. :0) At first I read something about a priest with a "kilt" and I was more interested.