Around the time I wrote that last post I began feeling some
side effects of the sirolimus. I became generally queasy, had a constant headache
and developed some unusually painful sores on my bottom lip. My new Mayo nurse
indicated that these side effects were not unusual and should improve over
time. Stick with the plan.
In the next 48 hours I started feeling much worse and
eventually developed the first fever I’d had since my July 2010 transplant.
Fever is not taken lightly in the transplant community because it can be a sign
of rejection or infection. I reached the on-call nurse at Mayo after a full day
in bed, but she was non-plussed and suggested I had a stomach virus. That’s
really all she could do from across the country – besides telling me to STOP
taking the drug or suggesting I head to the nearest hospital.
The general cramping and discomfort in my belly turned into
very specific pain. I tried to calm my nerves and get some sleep, but I ended
up with continual diarrhea and vomiting for the next six hours, into the wee
hours of that Thursday morning. My parents had gone to bed with their cell
phones at the ready, and I finally called upstairs around 5am to say I wanted
to go to the hospital. I had not experienced this type of belly pain before and
recalled that the last time I’d had a symptom I didn’t recognize, I had in fact
been dying from heart failure. That’s a lesson you don’t easily forget! My gut
said I should go to the hospital.
After a long and agonizing wait, I finally got some fluids
going and was given morphine – my best friend that morning (besides the toilet
haphazardly installed in a corner of the small ER exam room). I hoped to be
treated for the pain, get hydrated and stop vomiting so I could take my
medication, then I figured I’d go back home to finish getting better. That all
happened, but I didn’t end up going home until a week later, the day after
Christmas.
I was once again a mystery to the medical community. After a
slew of swabs, specimens, punctures and seemingly gallons of blood, it turns
out the sirolimus had made me very sick. It had taken such a bite out of my
immune system that I barely had any infection-fighting cells left, which left
my body feeling horrible and unable to defend itself. I felt like my bones were
slowly shattering inside of me.
It took a few days for the sirolimus to fully clear out and
another few to recover enough to eat. I finally ate enough on Christmas day
that I was released 24 hours later.
The good news is the sirolimus was responsible for that
entire episode so there was nothing permanently wrong, though things could have
gotten ugly if I’d stayed home and picked up an infection while my immune
system was so compromised. Also my family is wonderful and delayed our
Christmas celebration by a week, so I didn’t miss a thing.
The bad news, of
course, is that our latest idea for attacking my fatigue became impossible. We
weren’t able to test the hypothesis because I was never able to lower my
tacrolimus level. There is not another fully tested immune suppression therapy
for heart transplant patients – it’s sort of either tacrolimus + cellcept or
sirolimus + cellcept – and I assure you I will never even touch a sirolimus
pill again. If the tacrolimus is making me sick, the very unfortunate reality
is that I will probably always feel sick. There are some other mixtures of
drugs that we could try, and I hope to sometime soon, but we didn’t want to
mess with anything for a while after that Christmastime excitement.
So that’s the latest in my medical adventures. As for the
rest of my life, I’ve been gainfully employed again since the beginning of
February and recently bought my own home! I’m trying to at least pretend to be a normal person in hopes that one day reality will follow suit. So far: no dice. But a
girl can dream.
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| Triumphantly displaying the stick from the popsicle I ate - it was the first thing in a few days. |
