I chose diabetes...well, sort of

Thursday, 6 June, 2014

On Sunday I'll be sixteen months post total pancreatectomy and autologus islet cell transplant. Hard to believe it's been that long but it has. It's been a long road physically & emotionally but one I'm glad I chose! I've had my share of bumps along the road which I'll detail in another post, but I'm most effected by the new onset of my diabetes. It has taken me a long time to call it my diabetes because I was in denial I even had it for a long time. It never occurred to me to even consider the chance that my autologus (meaning my own cells from my body) islet cell transplant would fail!! Why would I consider such a thing?? I was relatively young, 51 yrs old, had never had a problem with my blood sugars despite having had three quarters of my pancreas removed in 1994 & was in fairly good health if you didn't count the chronic pancreatitis and all that it had done to my body over almost 26 yrs. I'm usually not one to overlook obvious possible outcomes, especially when it comes to my medical life, but I seriously missed the boat on this one!!

Long story short, immediately after the surgery it seemed my little islet cells were loving their new home in my right kidney & began to function as they had in my pancreas, but then I got a high fever. Over the next 24 hours, my once happy islet cells stopped producing insulin & my insulin requirements sharply increased well above what I had initially been requiring. By the time I went home, I was requiring more insulin than had been predicted. I still held out hope though. "Maybe the islets just needed to wake up & then they would start to work." was what I told myself on a daily basis as I injected my insulin. I was told it could take a few months for them to fully function. This surely was my case I told myself.

I finally had to face the truth that my transplant had not taken when my c-peptide (a direct measure of how much insulin your body is producing) was basically zero & had not moved since the fever. I was still in denial. "They're still asleep!" is what I continued to tell myself even though my endo(crinologist) told me there was little chance of the islets starting to function at that point but I refused to believe him! After all, he was only the expert in this department! What did he know??!!

I finally had to accept the fact that I had type 1 diabetes when I started to tolerate eating regular food and stopped my tube feedings. A typical post meal blood sugar was in the range of 400 & I was requiring more & more insulin. I had a tough time accepting it but eventually had to. I've come to believe there must be a reason for my having this disease. I'm still looking for that reason but I have to believe that some good has to come from my struggles with this. So, I chose diabetes over chronic pancreatitis & unlike many other living with this disease, I can say I chose diabetes. It didn't choose me!!

some things we have no control over but accepting it is good
i've had t1 since 1936 & on the minimed pump
let's just enjoy life

We never get to totally choose or unchoose this path. You know before insulin, it was routine that families would allow their loved ones to perish rather than treat the disease that would always win. I am reminded of that when I consider how fortunate I am to be born in a time when choice was an option.

I can never say diabetes is good, or that I would ever wish it on another. It is way to harsh a consequence. But in a way we all choose every day to live our best, get along, to have our struggles, loves, happiness and yes sorrow. We choose life. You have also chosen life May you live it large, and show the world the fruit of your being. Yes we chose life and living. All the messiness and upset, and disappointments are tempered with the joy and love and warmth of living.

No we did not want the choice, but then again we have a choice and that is the celebration of our age. Bravo for trying to keep those little islets plugging away. Bravo for sharing your story. Thank you for sharing it here. rick

I definitely did chose life, Rich. And I have a great one. I too am glad I have diabetes now when the technology, although not perfect, is certainly better than in the past. I admire all those that lived thru the archaic days of diabetes.

like me
i did not know any better
i made it

Shoshana; did you have your pancreas removed too??

but my pancreas sleeps