Approaching my 22nd month on the transplant list, I must remain patient as I face serious problems trying to control my blood sugar. At this point, I’m glad to have survived some recent episodes.
On the transplant front, all has gone silent.
For I haven’t had a call from the Thomas E. Starzl Transplantation Institute with a worthy offer of a kidney and pancreas for seven months after having been called in eight times — three times in one week in February — with potential offers for donor organs that, as it turned out, did not meet quality standards for transplantation.
I’ve been told I’m at the top of the list for my blood and tissue type.
So what’s the hang up?
When I went to UPMC Montefiore for monthly blood work, a UPMC official told me that organ donations, for some reason, have fallen off in recent months. The transplant institute also has had problems with its live-donor program, but that was not supposed to affect the deceased-donor program. I’m can only speculate that suspension of the live-donor program also affected the deceased-donor program.
Survival continues to be my goal. That’s been a real challenge of late.
Two weeks ago, I got on a bus in Oakland after an newspaper interview. My blood-sugar levels were dangerously low, and I failed to get off the bus Downtown. I ended up in the Swissvale at the end of the bus two unconscious hours later. There the driver got my attention and told me I had to leave the bus.
I can only remember sitting on a curb when a Port Authority police officer asked if I needed help.
“Diabetic” was all that I could say.
I ended up on an ambulance that rushed me to the UPMC Shadyside Emergency Room, where my wife and daughter eventually stopped by to scoop me up and haul me home.
Oh, it gets worse.
I was on our riding mower over the Labor Day weekend and wife Suellen went off to buy paint.
My sugar again dipped too low. I failed to stop mowing to test my sugar. I ended up on a harrowing roller-coaster ride on the mower all over the yard, up and down hills and around steep slopes, and down through little valleys before ending up running the mower into a creek and being dumped over the side into the creek bed.
When Sue returned home, she suspected problems when she could not find me or the mower and my car still was in the driveway. (Dramatic music.)
Soon she found me wallowing in the mud, face down in the creek and covered with crawdads.
She rushed to the house, got the Glucogon kit and returned to inject me with glucose. Finally able to walk again, but not yet fully conscious, I emerged from the creek bed completely covered in mud save for my wide-open eyes. She said I looked like a character from the movie “The Deer Hunter.”
She took me to the side yard, undressed me, and hosed off the mud. She threw away my pants they were so laden with mud. Then I got sick, and couldn’t keep down the juice she gave me.
Then she helped to bathe me -- twice.
So how was your weekend?
As a result of these “challenges” — Sue isn’t happy with me and isn’t as diplomatic in describing my misadventures — I’ve lowered my insulin by a full quarter of a dose. Still I’ve have had some low blood-sugar episodes.
Part of the problem is that I’ve improved my diet dramatically. Not as much processed foods and no sugar, dairy or meat. I could be wrong, but I think it’s my best chance of preventing dialysis with my creatinine levels at an abysmal 6.3, although down from the previous reading of 7.0.
I’m currently at 9 percent kidney function. My doctor said I must begin dialysis at 7 percent.
Yes, the waiting game continues. No, I’m not giving up or growing frustrated.
I now test my blood sugar before I mow, then multiple times while mowing. I mowed the entire 5 acres of the farm last weekend successfully while avoiding wallowing in the creek and visiting my crawdad friends.
Survival with more erratic blood sugar levels and ever-declining kidney function has turned into a life-threatening puzzle. I know the transplants also will be a big-time challenge, but they will be a welcome change from living with type 1 diabetes coupled with end-stage kidney disease.
At least, I hope.