Yesterday may well have been the worst day of my life. I’m guessing anyone that has undergone an auto or allo has had one or more of these. How the heck did we make it to the other side?
It started Sunday afternoon. GI issues run amok. I was still able to eat, but the food was parking itself in my now rock-hard, distended belly. Nothing was moving.
Monday the pain became unbearable. I was folded into a human ball of suffering. I couldn’t eat or drink. And I’d been given so many drugs–IV and orals that they coaxed down me after hours of trying–I was hallucinating and barely conscious. Not the best time to be wheeled down for a CT-scan.
Yes, after an excruciating belly exam (does this hurt? YES!). Dr Tricot immediately ordered a scan.
My poor wheelchair driver. He thought I would stand up to swing around into the chair. I thought he was going to help lift me in.
Down I went, scraping my left arm as I sat, like a pile of pick-up-sticks at the side of my bed, surrounded by IV poles, a now empty wheelchair and bedside table. Too much stuff in two small a space, especially with me plopped down in the middle of it all.
Someone called for help. The pain was indescribable. Ten minutes and a three person pit crew later, I was up and on the way downstairs for my CT-scan.
Turns out it was a good thing it was ordered; apparently results showed a thickening of my stomach lining. Why? An infection and/or a touch of auto graft vs. host disease (GVHD). Yes, I was surprised to learn after my first SCT back in 2011, that auto patients can get a touch of GVHD, too. I endured significant GVHD in my GI tract for ten weeks or so. Now? My stomach was most likely reacting to over 8 million stem cells that I was force-fed last week.
I was back to my room by 3 PM. Slept until 10 PM. I thought it was 4 am. Proof I’m still a bit out-or-it.
At this point, who cares? I awoke feeling much, much better.
It was bad. I would have oft myself if I had a way. I was screaming, “Just stop the pain!”
This is a tribute to all of my fellow transplant survivors, especially allogeneic (donor) recipients. Sunday night and Monday gave me an unwanted glimpse into the hell you endure while your new immune system gets settled in.. GVHD meds, Waiting a month or more for engraftment. You’ll endure so many “worst days” on your way to a brighter tomorrow.
The thing is, all of the well wishes and, “hang in there’s,” you get, at some point it doesn’t help. I don’t know how I did it, but feeling sore and loopy is light year’s better than what I experienced the past two days. I’ll take it!
There’s a light at the end of the tunnel–and it isn’t the big one.”
Well said, Angela. But it felt like it could be the end for me yesterday.
Feel good and keep smiling! Pat