Shakin’ All Over
It’s been a while since I posted anything. It wasn’t out of intent. I just couldn’t do it, literally. I was feeling a little foggy for a while, having some trouble pulling my thoughts together. The bright side was, I was getting stronger, I figured the brain thing was a very temporary thing. Then, things happened.
I agreed to be part of this research study. It was the usual double-blind format study: I didn’t know if I was getting the study drug or a placebo. The first infusion was shortly after my transplant, when I was still in the hospital and I was in a constant daze and they were giving me oxy like candy and I couldn’t have told you whether I was feeling any particular way from one minute to the next.
A couple weeks later, I went to the clinic for my first outpatient infusion. I started getting a little drowsy in the chair and when I tried to stand up after the infusion and the waiting period were over I got dizzy and had to sit back down for a minute. I stayed a little bit woozy for the rest of the day and I kept dropping off for a couple days. I had to consciously focus on staying awake or I would just fall asleep. I imagine that is what narcolepsy must feel like. (if I am being unfair to actual narcoleptics, as I said it’s just what I imagine it might feel). I only had these symptoms for a couple of days and I was on very limited activity anyway, so I pretty much forgot about it.
At the beginning of June I had my second outpatient infusion. This time, my experience was quite different. I was getting very dizzy during the infusion and I fell asleep mid-conversation with both Erin and the nurse. I also noted my legs were feeling numb and heavy when I tried moving them in the chair. When it was over,I fell back in the chair three times trying to stand up. The nurse and Erin wound up helping me get to my feet. I was unable to bend my knees to walk, and ended up sort of doing a rolling kick stagger. I had to ride the wheelchair down to the exit because I couldn’t walk. The nurse and the research coordinator downplayed the symptoms, assuring me that they would fade away in a couple hours, a day or two at the most.
They didn’t. I had to be helped to get up into our SUV, my legs just wouldn’t work that way. On the way home, my legs and arms/hands started shaking uncontrollably. from that point to today, I have to figure out how to eat only things that I can eat with my hands; my hands shake too much to cut any food up, and keep it on my fork. I have trouble eating soup because by the time I’ve gotten the soup to my mouth, only dribbles remain. I’ve been working on this post for three days because the longer I try to type, the more my fingers refuse to work the right way.
In the middle of all this, I almost forgot the good news. My two-month heartiversarry was yesterday! Happy re-birth day to me!
I volunteered for the study because it’s part of my mission. Anything I can do to help ease the path for transplant donors and recipients is something I believe in. I’m also generally in favor of volunteering to help science in the interest of saving and extending life. But I’m dropping out of this. I never signed on to being miserable and barely able to function for weeks after every infusion.
On the bright side, I am feeling better when I not sick with the infusions. The doctor is ordering cardiac rehab for me this week. I’m looking forward to being pushed in a supervised environment. I’m going to start gathering up my spare change and saving up for an E-bike. I’m not being lazy, I just want the boost for hills that are too high for me to tackle on my own and as a rescue for those times when I go for a ride and overestimate my reserve of energy to get all the way back home.
I’m also finding the fog is lifting a little more each day. I can concentrate more than I have been able to since the transplant and my memory and ability to thing cogently is gradually improving too. I am hoping I’ll be able to start working on my book again before long.
For those of you still hanging on, thank you. I appreciate your patience and your interest. And I know for many of you, the regular addition of my GoFundMe link. I’d love to be able to stop that, but I’m still incurring a lot of expenses traveling between Chicago and home, my prescriptions keep going up and rehab, while it’s not going to be a huge expense, is just another rock on a pile I’m getting buried under. If you have contributed already, thank you so much. If you haven’t and you aren’t able to, please pass the link along to your network. small amounts given by a lot of people still add up like big amounts from a view very generous people.
Mark's New Heart, organized by Erin Rausch
https://ibetmylfe.medium.com/ We invite you to follow along, using the link above. Mark shares the valuable, and…
I promise my next post will be more timely, and more upbeat. I’ve been doing a lot of kvetching of late. (For those who don’t speak Yiddish kvetching=whining)