"What's the Prognosis?"
Yesterday somebody asked me what the prognosis was for me, having diabetes. And I was taken aback by the humongousness of the question, even though I've answered it before, for myself and others.
In the end, the best answer (which I didn't give), is that the prognosis is uncertain. I'm unlikely to die of diabetes in the next decade. I already have complications and I might develop more, have the ones I've got get worse, or even have the ones I've got get milder. I am likely to die of diabetes, though not in the next decade. I am likely to live long enough to do many meaningful things and to make my education worthwhile.
I know that it is possible to live a long time with diabetes, but I feel irritated when people feel compelled to share stories of people who did. I know that "noncompliance" doesn't help, but it doesn't make me feel better when you describe your relative who is forty-five and dying of type one diabetes as having been noncompliant.
I am 19 years old. I have had, by medical standards, well controlled diabetes for two years. By normal laymen terms, my diabetes has been on a roller coaster ride. I had uncontrolled, undiagnosed diabetes for a few years prior. If I am lucky enough to live to be 45, which I think is likely, then it is also likely that I will have months and years in which I'm more and less willing able to control diabetes. I spend most of my time with one eye on diabetes. Can you imagine that that won't grow tedious in twenty years?
A medical person I trust says it takes a cumulative five years of poor control to wreak havoc on the middle, average person's body. My body had probably endured that by the time I was diagnosed. I am sitting on a bomb.
But the catch is that nobody knows if it's a dud. Maybe I'm that lucky diabetic who could run blood sugars of 300 for sixty years with no major ill effects. I know I'm not the unlucky diabetic who can't run blood sugars of 300 for even two years, because I've already done that. Over the last two years, my average over a given month has varied from about 105 to about 160. Both of those extremes are considered good diabetes control. Neither one will save me if the bomb I'm sitting on is a potent one. Any improvement in diabetes control will lengthen the time it takes for the bomb to go off and it will lower the odds that the bomb will explode with much force. But I have no hope that the bomb will not go off. I am already dealing with minor, early complications. I am only hoping that it will take decades for them to get bigger, and that it will take decades for new complications to join the ones I've got. But I don't truly believe that it will take decades. And I don't know. I can't know. Diabetes complications unfold very differently in different people.
And as a last and tricky monkey wrench, I do not know if any major medical advances will benefit me. The CGMS will not make a major difference, I do not think. I think that the benefits will be nice, but in the long run not much benefit. I see no benefit for me personally to an insulin pump, and I don't plan to use one. I think that islet cell transplantion may help the body recover and may reset the timer on the bomb while it allows for temporary (maybe a year's worth) of euglycemia, but it requires immunosuppressants and major surgery. Kidney dialysis could also improve to make kidney disease less threatening, and so could various heart disease therapies. The current BCG trials for diabetes are unlikely to make a huge difference for people whose diabetes was caused by more than just GAD autoantibodies (mine was caused by at least GAD 65 and ICA 512), but maybe something else will. And perhaps adding cpeptide and amylin back into the mix will help things. I really couldn't say.
What's the prognosis? Ask me in ten years.