muddybrooks

My experiences post total pancreatectomy.

I’m Angry!!!

on June 5, 2014

I’m really angry with the fact that I have to deal with surgical T1D!!! But I feel I don’t have the right to be. After all, I chose this…well, sort of. I’m the one that decided to have the rest of my pancreas removed February 8,2013, after having had half of it removed January 31,1994 due to chronic pancreatitis. I knew diabetes, type one, was a real possibility, but I really didn’t think it would happen to me!! Seriously, I was having MY islet cells removed, before they threw away the rest of my pancreas, purified and then transplanted back into my right kidney where there is a large blood supply. There was no risk of rejection. So, surely, my islets would be happy there and continue to provide me with the insulin I would need for the rest of my life. Right? WRONG!!!

My transplant surgeon explained to me the usual scenario with the rates of T1D after pancreatectomy. One third of patients require no insulin and their islet cells take after transplantation and all is well with the world. Another third, some of the islets take and they only require a little bit of insulin. And, the last third, the islet transplantation fails and these people have to deal with what I was told is “brittle diabetes”, meaning wildly fluctuating blood sugars that are difficult to control. I truly never thought I would become part of the last third. I wholeheartedly believed my transplant would take. These are, after all, my own islet cells. What would make them fail??(I have to say though, that I don’t feel my diabetes is unmanageable! Is it difficult? Yes, but so is everyone else’s diabetes. I feel very fortunate to be managing my BG’s fairly well. I was so scared I’d be dealing with this unmanageable beast and I’d be riddled with complications in short order. This, thankfully is not the case!!)

Right after my surgery, in the surgical ICU, my islets seemed to be functioning beautifully but I was requiring a minimal amount of short acting insulin. OK. So, I would be one of those that had some success but would need a little bit of insulin. I could deal with that. A few days later, I developed a high fever that was sustained for a number of hours despite Tylenol. Immediately following the fever, I started to require large amounts of insulin with fluctuating BG’s. This can’t be happening, I thought!! Seriously, I was given a brief foray into partial success with the need for only small amounts of insulin, but now, a fever wiped out my islets!!! I couldn’t believe it. I had tasted success only to have it ripped away.

Boy was I angry!!! But, right away, I felt bad for being angry. I knew this was a possibility, yet I chose to have the surgery anyway. Who did I think I was being angry?? I was thinking about all those who had innocently acquired T1D through no fault of their own, especially the children, yet, I directly had a hand in my T1D and I had the gall to be angry? This is how I continue to feel. I don’t know if it’s right or wrong but I feel directly responsible for my diabetes, so I have no right to be angry.

I’m also angry with myself for not even considering the possibility that my islets would fail resulting in T1D. Maybe then I could have researched the whole thing and been prepared for what was to come. NOPE!!! I did NO research until after I was discharged home from the hospital, and then I couldn’t read enough about it!! I always feel guilty when I have these times of feeling angry about the whole diabetes thing.

Part of the reason I started this blog is because I feel I don’t “fit in” in the diabetes community because I didn’t get my diabetes from an autoimmune disease or through genetics. There are some things that are different about my T1D than the usual PWD. So far, I haven’t met, face-to-face, any other surgical T1D’s. Luckily, though, I have a group of us that communicate through Facebook. I don’t know what I would have done in the beginning if I didn’t have this community of people. We all have had the same surgery and find ourselves dealing with this “Daily Guessing Game” together. I would, however, like to connect with some other surgical diabetics that live in my area or here on Muddybrooks. People that have either had a pancreatectomy through a trauma or electively, like myself. We can learn a lot from each other. How do you feel about your diabetes??

Hope you’re having a great Wednesday and I apologize that this isn’t a “Wordless Wednesday” pictorial post. But I just had to get this off of my chest. Thanks for reading along!!

 

Remember, Check!! Don’t Guess!!

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