Chicago Marathon 2012

Chicago Marathon 2012
You Can Still Run For A Cause!

Monday, November 10, 2008

Ponderings on Family, Diabetes and of course, Research.

Ever feel like you're stuck in your head and you can't get out?

I've been thinking a lot about diabetes, the quest for holy grail, erm, diabetes research, and my family.

Family first right?

My parents both died six years ago. My mother was type 1 and died of complications of diabetes. Specifically, hypoglycemia in combination with cardio-vascular disease. My father, who was type 2, died of lung cancer, just 10 weeks after my mother and 8 weeks after his cancer diagnosis.

My oldest sister, Lisa, died this spring waiting for a liver transplant. She had diabetes also. Hers was a complication of cirrhosis. And now, my other sister is pregnant and has gestational diabetes. She's active, she's not overweight, she eats a healthy diet and yet still she got hit with it. Chances are it will go away when the baby is born, but the thing is, you never know. My sisters were adopted, so why did they end up in a family of diabetics? Who knows. The only person left is my brother and sometimes I wonder when he's going to call me and say "hey guess what? me too!" I hope it never happens, but still. I wonder.

It's as if we're cursed. Six people, five with four kinds of diabetes (three if you count cirrhosis induced diabetes as type 2). If you go back before my parents, there is no history of diabetes at all, on either side of the family. I know there are a number of factors influencing the increase in diabetes diagnoses in the past 100 years, including better diagnostic measures, increased average life span and the fact that people live longer with diabetes and are therefor breeding more of us into the gene pool. The media seems to forget these points when they talk about how fat and lazy our society has gotten. I'm not dismissing lifestyle, but lets not dismiss genetics and better living through medicine either.

So what to do? Not breed? Of course that's no answer. After all, it might prevent my children from getting diabetes but it doesn't help those of us already diagnosed. Live a better lifestyle? Good advice for everyone, it's easier said then done and, again, not much use in preventing diabetes if you've already been diagnosed, not to mention, it also doesn't prevent autoimmune diabetes. So we look to researchers for a cure, which sadly (and frustrating to everyone involved I'm sure) is not an easy endeavor. The body is a weird weird complicated thing to say the very least and one thing I've learned through out the whole transplant experience is that islets don't like to be messed with.

For each islet transplant there is usually more then one isolation done before an adequate supply of well functioning islets are obtained and able to be infused. Also, many patients need more then one infusion to be insulin free. UIC's program has managed to narrow that a bit and I was fortunate. I've only needed one infusion of islets to get off and stay off of insulin for two and a half years so far. I say so far because there are no guarantees. I understood that when I signed on, I still understand and accept it now. But what does the whole thing mean?

It means, at this point, if islet cell transplants were pushed forward into standard diabetes care and out of clinical trials that a large number of people would be put on a waiting list for one (or however many it takes before they get enough qood quality cells isolated that they can transplant) of very few available pancreases. And then, if the patient is able to get off of insulin with hopefully, one infusion, will their immune system still destroy those cells even with anti-rejection meds? Will the immuno-suppression meds be toxic to the cells because islets are that fragile? Will the immuno-suppression meds make the patient sick enough that quality of life isn't any better then before transplant? And then, will the patient be compliant and do their part in safeguarding themselves and their newly procured cells? Is a big undertaking by all involved.

So you see, there's a lot to work around when it comes to curing diabetes, be it through islet transplantation or other methods. No medication is with out side effects and no matter how you look at it messing with the immune system is going to have its pitfalls. If it were easy, it would have been done years ago, like back in the 80's when my doctors kept saying "there's going to be a cure in the next 5 to 10 years", and then said it again 5 years later. A lot of us with diabetes gave up holding our breath the second or third time we were told that. Funny though, I haven't heard it in a long time. well, not until I got my islets. Oddly enough, even though I think i understand the difficulty of it all. I think I believe once again in a cure.

For type 1's. But what are we doing about type 2? or LADA or any of the MODY's out there? We need more funding for research, durn it!

*sigh* see what I mean? These are the things that get stuck in my head and I'm in no way qualified to find answers. So they rumble around, I don't sleep, and I think.

Once again, I just need to get out of my head...

No comments: