What a weird, whacky snafu of a day. I want to assign blame but a portion belongs to me as well.
Suffice it to say, that a long chain of events led me to having a cardio stress test scheduled for today. I have significant shortness of breath that is getting worse. To the point of considering the ER a couple times this weekend. If I thought my life was impacted before well...it's quite horizontal these days.
I voiced concerns about this test. Someone along the way noted that they have all sorts of ways of doing this -- seated, meds, etc -- not to worry. But then there was the perky scheduler on the phone. She informed me they'd do an echo ultrasound of my heart, then I'd run on the treadmill, and then they'd do another echo. Umm, hold on, uh... could you back up there? Run on the treadmill? Uh, nope. I could walk slowly holding on, however, my motor skills would likely fade quickly -- similar to a wind-up toy going down. I thought my doc would have noted limits or issues on this test for me.
I placed more phone calls. Some were returned. Some weren't. My doc's office reiterated that she wanted me to do the test. I decided to go as I wanted the echo. My pal Mikel chauffered me in my car. He and I pondered how this would work. This test was at the hospital where I had brain surgery. Lots of memories came back as I walked familiar halls.
The long halls led me to quickly wonking which surprised me. I began walking through the molasses and soon started the slow bobbity walk. Why did I leave my cane in the car? Why didn't we grab a wheel chair? I hadn't been trying to deny my function. It's just hard sometimes to predict as it goes all over the place. And, things are different now. Am quicker to wonk and quicker to recover. Anyway, at this point I spied a chair by the coffee shop. Every ounce of energy was focused on getting to that chair.
I sat in the chair for a while vacantly staring and hoping the vibrating would stop. Mikel went off to find a wheel chair and soon we were off again. The assistant came out to get me. Surprise clearly was registered on his face. I walked across the room in a fashion I thought was my pretty walking. He and I discussed the appropriateness, or not, of the test. Mikel suggested I take the chair so I'd have it after the test. The assistant wheeled me back to the tech. They shared a wtf look with each other. I said I'd been asking along the way too.
Half-heartedly, I said I'd be game to try it for a bit but they probably wouldn't get the target heart rates. The assistant emphatically pointed out to the tech, "Man, you should see how she walks, she can't do this." While I knew he was right a small part of me inside said, "Hey pal, that's my pretty walking you're talking about!" In any case, a phone call was made and it was decided an echo would be done with the med/stress test later.
When the tech began the test, my arm/shoulder twitched a few times. I apologized and said that wasn't voluntary. Just my nervous system releasing stuff. She didn't say anything, re-positioned it and continued. I had a bigger trunk twitch about a minute later. She said, "Every time you do that I have to re-position you. Don't do that." Whoa, let me repeat. This is unvoluntary -- I have nervous system impairment. Oh, what's wrong with you? Oh, don't even go there. Actually I did for a while but could telling she wasn't tracking.
Mikel and I went out to the top of the parking garage. It was a beautiful warm, sunny day and we had a view of the city. I left through those same doors over a year ago after surgery. At that time I had hopes that, as a friend put it, the brain surgery would be the giant reset button. They didn't quite pan out. I contemplated my hopes now. I still have them. Just different ones now.

Donna, I am loathe to dispense medical advice so please don't take this as such but simply a reporting of what happened to me. About six years ago, I too was suffering from shortness of breath, did the stress test, followed up by an angiogram, which said I didn't have any blockages so we kept pursuing cause for shortness of breath. It turns out the cause was a mistake someone made in the dosage of my thyroid med because my normal 50 mcg dose had been written as 100 mcg, and having just retaken my thyroid test prior to the new med dosage, no one, including me, thought to check. I, having brought thyroid meds home for years, just didn't check the bottle. Long story short, once the dosage level was corrected, the shortness of breath went away, BUT I lost the normal use of my right leg after the angiogram, changing my life. Not a pretty story.
ReplyDeleteJudy
Judy, no worries about dispensing. I take what you shared as your experience and up to me to decide if anything's applicable. I have thought of thyroid itself as a culprit since my follow-up blood work was a couple months ago.
ReplyDeleteAm eagerly awaiting the echo results since my ECG was off. That's why I went to this crazy appt -- to get the echo. I'm so sorry to hear about your angiogram story. I'd be interested if you're inclined to share more -- my email is in my profile.
I appreciate you sharing your experience, your comments, your Haiku, and thanks for breaking form today.
Donna
totally impressed that you hung in there. After one ignorant assistant I would have done the exit left as the cartoon character does.
ReplyDeleteDealing with memories at the same time - you are definitely a strong woman!
Hope - a word with such meaning. Never loose it!
Warren Zevon song that I wish I could play for the peeps that ask me what is wrong.
warning of language for those who dislike bad words uses the $ hit word a lot
http://www.youtube.com/watch?v=qHDdqub"
Donna, I haven't been disabled for that long, so I'm still surprised when the medical establishment seems totally unprepared to accommodate people with disabilities. A tech watches you wheel up to a gurney, then stands with his hands in his pockets, apparently expecting you to levitate up onto it. They seem totally gobsmacked that you can't hop out of your chair and climb onto the table. Excuse me? This is a major teaching hospital. Am I really the first person you've ever seen who can't do this?
ReplyDeleteShortness of breath is scary. I hope you find some answers soon.
I don't have much to add beyond what's already been said with respect to the medical profession and their inability to handle disabled folks.
ReplyDeleteBut, re the stress test, has it been suggested to perform the chemical version? Skip had a stress test after she was no longer ambulatory ...
Reading this feels so familiar...the starting out "walking pretty" and then the molasses...the key in the back winding down, the involuntary twitching...the ineptitude of so called medical professionals. Yikes. Sorry you are feeling extra crappy on top of feeling crappy with the addition of people who technically should know better making you feel crappier :(
ReplyDeleteJan - Oh yeah, I'm a Warren fan. The link above didn't work, but I'm guessing this is one? :0
ReplyDeleteMaybe I'll try this with the Rheumy on Friday.
http://www.youtube.com/watch?v=qHDdqubE7zQ
Zoom - I think gobsmacked may be my new favorite word! Yeah, I was surprised that she seemed thrown off by my minor issues, including needing to adjust the pillow for the literally screwy portion of my head (they stick out a wee bit). I can only imagine how befuddled some act when they need to assist with a transfer!
Cranky - Yeah, my GP wants me to do the chemical version of the stress test. But a couple things are on the diagnostic table that I'd like cleared up first. That test sounds scary.
Laura - Yeah, I sometimes envision myself (not intentionally) as a little marching wind-up toy since I lean back, kick my legs out and then lean forward when wonky walking. I'll think -- is this really me?
Thanks all for the comments. It will get better or at least different.
I actually have ASKED for the medical stress test, but after last years 5 day stay in ICU which began w/tachycardia, stopping and "rebooting"(seriously? I know this is Seattle, but come on!) my heart TWICE, I've chickened out. You ARE brave and it seems we must be this.
ReplyDeleteZoom, I just have to say, UW Hosp/Med Center and I had a long battle in 2005ish over non-lowering exam tables. I went as high up as I could wrote letters, made calls, had article published in online magazine, mailed out brochures from a company that makes them and THEN I fought with Polyclinic----I won't give up, but we all need to demand these exam tables at every appt.
Donna, I too dream of that wind up walking toy. Dare to hope.
Yeah that's the one! I so get into that song sometimes.
ReplyDeleteGosh, the nerve of these hospital idiots/simpletons/nimrods! Maybe the Neanderthal tech didn't know what "involuntary" means. I would love to see some of these people go what we go through. They shouldn't have to see through our eyes to be compassionate. Stay strong and keep fighting that anxiety with a positive attitude. That's what I do. It helps some.
ReplyDeleteDiane - Yikes! Sounds scary -- the rebooting that is.
ReplyDeleteJan - It's a great song - thanks for sharing.
Maria - Yeah, it made me realize that I've been relatively lucky with good techs. Can't say that I've had much anxiety lately. This shortness of breath is a lot different -- I get it with talking or sitting up for very long. I will stay strong -- positive, well, not sure about that. I think it's over-rated :0
Hi Dona,
ReplyDeleteStaying positive and keeping hope alive is good.
Keep warm.
Love,
Herrad
Herrad - Yes, hope is definitely good -- I really try to keep that fed and alive without elapsing into delusions. I should probably clarify my comments to Maria about being positive. They make me sound downright curmudgeonly. Maybe I'll do a post on that. Thanks for stopping by!
ReplyDelete