I'm tired. It's disjointed. I apologize in advance. Confused? ask questions and I'll try to clarify...
*be forewarned, bad grammar, run on sentences and poor spelling ensue*
For those of you that don't already know, in May 2006 I had an islet cell transplant at University of Illinois Chicago Medical Center in, you guessed it, Chicago. Illinois. Since then I've discovered that many people in the diabetes community are critical of islet cell transplantation, and specifically of the need for immuno-suppression drugs afterward to prevent graft rejection. I think rightly so, to suppress the immune system opens up a whole Pandora's box of potential problems. The real question is, is it worth it?
Before I had my transplant I was on an insulin pump, testing my blood sugar 7-10 times a day and yet even with frequent lows my hemoglobin A1c was usually in the low sevens. Before pumping I don't think I got below 8 in my 20 odd years of diabetes. I was fairly insulin sensitive. My basal rates varied from .65 units of insulin an hour to .15 units an hour during activity and I'd often still go low even with the smaller basal rate. I was hypoglycemic unaware to a scary degree. I tested under 30 more then once after thinking, in the fuzzy glucose deprived way your brain gets during a low, "what have I been doing for the past hour? I'm hungry. No I'm not. I think I'll lay down on the floor. Maybe I should test. What am doing here?". I also tended to go dangerously low while sleeping, and a more then a few times woke up with an emt staring down at me. I like emt's, they're good guys and all, but they're scary to wake up to. I was afraid of dying like my mother did when her heart stopped because her blood sugar dropped low enough her body couldn't handle it. I decided I needed to do something. Anything. My first thought wasn't "transplant!" (my first obsession was continuous glucose monitoring, made available in my area only weeks after my islet transplant), however, while I was researching general diabetes type management, I developed an interest in islet transplant research.
Here I am. four years later, transplant past, immune system suppressed, beta cells beginning to decide not work as well as they once did (they're doing good, really they are, they just like to go on strike occasionally) and do I think its worth it?
That's the part that difficult for me. it;s what I get stuck on, because it's not as easy to palpate as some of the negatives out there of supressing the immune system (like medication side effects, the increased risk of infections and certain cancers). I can say I feel better, but some days I don't. I can say I have more energy, and then anemia rears its ugly head. My blood sugars are good. really good. I can pretty much eat what I want and most of the time my islets do their thing. But then there are days when, like i said before, they go on strike and my blood sugar goes up higher then I'd like it to. Those days frustrate me to no end. Those are the days you all read about here when I'm whining, but the majority of the time I have great control and I'm happy with my borrowed cells.
With the control I have, I've gained what I think is the best part of the islet transplant, peace. I no longer worry about going low in the middle of chasing my nieces around the block, or babysitting. I can go hiking and not have to plan for every diabetes related disaster that might befall someone in three hours in the middle of nowhere. I go to sleep and know I'm not going to wake up and have an emt staring down at me because I bottomed out in the night. Last winter we blew out two tires hitting a pothole and had to walk in the snow and cold. I had no food on me, or cash, and no access to an atm. We were no where near a store anyway, so I couldn't have bought food even if I needed it, and it was just such a relief to know I didn't have to worry about my blood sugar. That's the kind of peace I mean.
Before my transplant. I thought about diabetes constantly. It never went away. I still think about it a lot, but I think about it because I want to, not because I have to. I still test my blood sugar, usually two ro three times a day. sometimes more. sometimes. not at all. I test it to keep an eye on how things are progressing and for the reassurance that my islets are still functional. I no longer feel the need to test in order to make it through the day.
There are other things to be thankful for, like the fact that my kidneys have improved. I also I can't remember the last time I felt that annoying burning pain in my feet from neuropathy. And I have glaucoma, the few years before my transplant the pressure in my eyes was slowly increasing, yet over the past two years that has stabilized. I still have damage from glaucoma. I'm still not allowed to drive but my vision hasn't gotten any worse.
So yeah, in the diabetical sense I'd say at this point having had the transplant was worth it. And If i get to the point that my borrowed islets quit functioning and I end up right back where I was, I still have my cancer diagnosis and cure.
For that, I shall always be thankful!
So yeah, I'd say it was worth it.