Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
My current transplant really never did work the way it was supposed to. I have high antibodies from my previous transplant; my body is primed to fight any foreign object. After the transplant, I underwent four rounds of a highly toxic anti-body lowering drug treatment called IVIG. Despite those arduous treatments, the rejection episode I had just after surgery had done its damage and my kidney was destined to fail from there onward.
Most folks who get successful transplants visit the transplant clinic frequently until the docs are comfortable that things are going well. After that, transplant recipients who are doing well can visit the clinic as infrequently as once per year. A good transplant, combined with a good patient, is a sweet gig.
I visit the clinic more often – pretty much every six weeks for the last four years. The clinic visit, aside from the excruciatingly long wait, is basically a five minute check in with the doctor. That morning’s blood draw reveals how the kidney is working and what pharmaceutical adjustments might be made so that everything remains in working order. It’s a straight-forward event.
Unless the numbers keep slipping the wrong direction. And then that damn appointment is torture. The three days before the appointment are an exercise in keeping cool. The most infinitesimal details of my health become exaggerated as the appointment nears. And the thoughts begin to race.
“Are my ankles more or less swollen than yesterday? Do I feel more tired than I did last time I went to clinic? Have I been drinking enough water? I wonder if my blood pressure is up? What am I going to do if my kidney function goes even lower? If my potassium is high will they check me into the hospital again?”
And my favorite: “What if this is my last visit to clinic? Is dialysis going to start tomorrow?” My life as I know it is seemingly in the hands of some numbers on a page. The laboratory places an “@” next to each blood value that is out of “normal” range. The doctors don’t show you that report until after I’ve waited, and wondered, what the expressions on their faces might be saying. If you’ve taken the SAT, or waited on the results of a job interview, you know how this feels. Waiting for someone else to tell you what your future holds: anguish-laden at best.
As it stands today 12 of the 26 items on my blood values report have the foreboding “@” symbol. My GFR (glomerular filtration rate) is now 18; a GFR of 15-29 is considered “severely reduced kidney function.” There is no category below 15, that’s just failure. Your GFR is probably between 90-100.
Lately, the days between appointments seem to all have hints of worry. I’m three points away from failure after all (it can hold here for a while, but not forever). My next appointment is July 17. To date, my 3 days of paranoia have been limited to just that – speculation based worry. And while I am firmly and confidently walking towards a real future, there’s something comforting about remaining only paranoid.
Only paranoid. How about that?