One of the reasons that prompted me to start this blog was so that I can share with others the many different tests and interventions I was going through with FH. I sometimes felt like a human guinea pig - and I still do, 40 years later, with every test and every new drug they send my way.
In addition to the quarterly lipid and liver panels that I have had done since I was 8, many other tests and investigations were added after FH had caused atherosclerosis and heart disease: yearly ultrasounds, CT scans and MRIs, every-five-year angiograms, yearly ABIs, which are like a radio-wave test (I think) checking for narrowing of your peripheral arteries. To say nothing of all the X-rays for every cough you can’t explain.
I wanted folks that might be diagnosed with FH to have some expectation of what tests are needed or required and for what purpose.
Every type of radiation ever invented, I believe, has gotten through this body at various intervals. I know not to wear my jewelry (or anything metallic) when I do an MRI and I know that the CT contrast solution will make you feel like you just wet yourself.
When the technologist walks you to the CT/ MRI/ X-ray/ Ultrasound room and asks (they ask every-single-time) “have you ever had a CT/ MRI/ X-ray/ Ultrasound before”, I roll my internal eyes and always say “yes”. I know that I am not allergic to the dye in the CT exam and that I taste metal whenever they flush the IV lines with saline. I know I am allergic to the glue on the EKG stickies as well as the glue of medical tape, after they tape up the IV to my arm, or after they pull the IV line out or collect blood samples from me and apply pressure to send me home, covering the gauze with said tape.
After all these years (40 years of FH and about half of those of heart disease), I pretty much know the drill at every test and I know my reactions, or lack thereof for every test. At least I thought I knew everything. Till today ...
Today, I had to get a CT scan (with and without contrast) of my abdominal aorta. I knew the drill: they would put an IV in, make me take my bra off and my belt if I had one (I didn’t on purpose), make me lie on a table and put my body through a donut looking machine, move the table with me on it in and out of the donut a few times, tell me to hold my breath a couple of times, and at the half-way point inject the contrast solution in my veins through the IV. They asked me if I have had the test before, and I said yes. They asked if I had ever reacted in any way to the contrast solution and I told them no, but that I hate that it makes you feel like you lost control of your bladder. They said, well, yeah, they can’t do much about that (actually, they can do nothing at all about that unless they put you to sleep but they won’t do that).
So, we go through the motions. The tech does the first part of the test (no contrast), and then she warns me that she will send the contrast in and she’ll do the test again. All I was expecting was the really warm feeling when the solution goes through my bloodstream and the crazy sensation I have told you about. I knew it should be about 2 minutes and then it’ll all feel normal again.
Only this time, it was different. This time, that warm sensation did not last for two minutes. After about a minute it got worse. And was getting worse and worse as time went by. It was not just the warm feeling, but my head felt like it was about to blow up. My face was numb and felt paralyzed, and the ceiling of the room (all I could see when lying down) started spinning. The table felt rickety and shaky and my head was so hot I thought it would implode! I kept thinking “I am dying! Oh, Lord, this might be it! I am losing my consciousness and I am surely dying.” It lasted for what seemed like forever, although I am sure it was more like 10 minutes. The tech came in and I was not moving and I could not even answer her. I heard her voice but I didn’t know what she was asking. I vaguely heard her asking if I was OK, and I faintly said “I don’t think so”.
After I explained to her what I was feeling, she took me to a different room and sent a nurse to come and take a look at me. My speech was slurred and faint, like in a whisper.
The nurse evaluated my symptoms and concluded that what I was having is what they call a “physiological reaction” - not to be confused with an “allergic reaction”. She said with an allergic reaction, my tongue and throat would swell up, I would have hives and start sneezing and have an itchy face or body, but I was not having all of this. Instead, I was having something similar to a head-rush because the contrast was injected at a high speed. She said your body is kinda confused and trying to tell you “oh, no, what just happened?” - because it got too much dye too fast in a short amount of time.
She said CT contrast is injected at various speeds and different tests in different areas of the body ask for different speeds. The abdominal CT tests require a higher speed and this is probably what happened. She said there is nothing they can do to prevent this other than just lower the speed. But she said sometimes this is not possible because lower speeds might not capture clear pictures.
The nurse said for an allergic reaction, they can give you Benadryl, but for a physiological reaction, there is nothing but awareness and taking it easy after the reaction happens ...
She said next time I am getting another CT like this to warn them that the higher speed will make me loopy but to expect that there is not much they can do about it.
I was wearing a mask in the office and all I wanted was to be out and breathe some air without a mask. She offered to keep me in the office for a bit as I was still dizzy, even after 20 minutes or so from the test. But I walked out, holding on to walls and slowly making my way to my car. It was another 20 minutes in my car till I felt well enough to drive.
Even after I got home (45 minutes later from waiting in the car for a while), I was still in a fog. I was still dizzy and unstable on my feet, and after having some lunch and feeling a bit stronger I felt completely drained for the rest of the day.
I am posting this just as a personal account of what can happen over time - no two tests, I guess, are alike, even if on paper they are virtually the same test. The nurse said anything can happen with time. Your body changes, your body’s tolerance for things changes and the factors that influence your body at the time of the test are always changing. I might have been fine all these years getting CT scans like they’re a fun pastime in the photo booth at the fair, but my body is different now and it can react differently than ever before. You just never know.
I don’t think I’ll ever discount any new “old” test that I am going to have from here on out - and will look at it with new eyes and know that anything can happen.
And oh yeah, the tape they stuck on me during the IV and after they pulled it out did break me up all over, but at least this part I was expecting.
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