I went to the cardiologist today who said my heart is fine. He said he could not say for sure but that it was "very unlikely" I would develop any of the heart problems associated with Freidriech's ataxia. As far as the light-headedness goes, he basically said: Watch yourself; you have low blood pressure so you will really feel a drop of 10 points. This was great news, but the dream I had last night was too odd not to tell ...
Last week, when we were waiting to see the cardiologist, I started telling my little sister all the doctors I have seen. I got up to the neurologists and geneticists of NIH and lost track. Last nigh, I got a chance to see them all.
I dreamed I went back to NIH for a follow-up. It was not promising.
I got there and recognized many of the doctors as they introduced themselves. The first test was to ride a stationary bike that also had an arm exerciser. The doctors called in a therapist to make sure everything was safe and I was warmed up. I was hoping it would be one of the therapists I am still in touch with, but instead it was someone who looked like Sue Sylvester from Glee. She proceeded to get on the bike, ride a bit, announce her muscles properly stretched and leave.
Mom helped me onto the bike. It required me to take off my shoes, but I still rode well. I thought I did. The doctors said things like: Is that the best you can do and Not so easy, is it?
From there we headed to another office. I wanted to stop at the bathroom, but there was a baby in there being catheterized or something and a mother blocked the door, daring me to go past her.
I went back later. Holy cow! What a bathroom! It had fountains for bidets and lots of stalls. There was also a row of bike-like devices. But best of all: a self-serve soft ice cream dispenser. It seemed that the women's bathroom did not offer ice cream because several women were in the men's room getting cones.
Afterward, I went back and waited for my next appointment. NIH had changed. It had become kind of a hospice spot. I saw a lot of dead people, mostly older.
That was more or less fitting because when I finally got in to the appointment, the doctor told me there was "substantial" decline in my systems from the Freidriech's ataxia. They had only expected a "moderate" decline so they thought we should get "aggressive" in treating the FA. I don't know what they suggested. It did not involve radiation treatments. At least, any more radiation treatments. They told me that one of the doctors at an earlier NIH visit had treated me with radiation, which they said they do not use anymore. But don't worry, they said. (JUST TO BE CLEAR: Never had radiation treatments.)
That's all I remember. It wasn't all awful, though. I also won a pair of round-trip tickets anywhere in the USA at some town fair.
It was not limited to the continental U.S., and my top four choices were: Alaska, Hawaii, Puerto Rico or a U.S. territory in the Caribbean. It was so weird airline, like Scandinavian Air.
I was trying to decide if I should take the friend who encouraged me to play the carnival game where I won the tickets.
Apparently, I am not going to die because of the light-headedness; I am not so sure about the FA radiation treatment.
Subscribe to:
Post Comments (Atom)
3 comments:
will there be an ice cream dispense in your bathroom in the new house? K and joed would camp in there.
sdt
I like sdt's idea. It's better than JoeD's two toilets so you could chat while using the facilities.
BT
Who wants little kids camping out in m bathroom?
Post a Comment