Too Brittle - Chris Miller on his islet cell transplant journey
Anna's Blog By: FatCatAnna
The Roller Coaster Ride of Diabetes! Whoo! Whoo!
I am a Type 1 diabetic diagnosed back in the early 60's as a child. I am living in Montreal, Canada and enjoy scribbling about diabetes from time to time. I’ve had my ups / downs just like any person would experience with going through life - diabetic or not. My motto in life? Diabetes does not control me – I control it!!
You can find more posts/discussions at my Facebook page called "The Roller Coaster Ride of Diabetes" and also on Twitter under my name of FatCatAnna. Feel free to "friend" me at both places - since I love to meet up with new folks all around our big blue marble!
Day 4: PROUD #dmpad - Nov 04
Here's the story behind my friend Richard's picture I posted for today's topic. I think at the time he was on the phone wheeling and dealing something from his hospital ... more
The Big Blue Test - You Can Do It - Nov 03
I'm kind of feeling abit down. After my endo appointment earlier in the week - with the weight issue (I wasn't surprised by that - but still brought back memories ... more
A friend of mine here in Canada, Chris Miller is going this route and is blogging about his experience – Too Brittle. He is like me - VERY “sensitive” to insulin. The old fashioned term for this is still referred to as "brittle" – and I have abit of a hatred of that word as you’ll see below. Dr. Peter Nebergall gives a good description on what “brittle” means (you can find his expanded words at this link ) – and you’ll find me quoting him a few times through this blog – because I finally understand myself with his simple description (yes – I’m always learning)–
“Real "brittle diabetes" doesn't follow patterns. Individuals whose diabetes is "brittle" experience unpredictable, out-of-proportion rises and swoops in blood glucose, within short periods of time, as a result of very small deviations from schedule “
So, what’s my beef with the word “brittle” (arrhhh – I hate typing it out with a passion – but it’s all part of this blog). Well, as a sweet faced (NOT) teenager I had this feeling when my German endo would look at me in the eye - with disgust in his face. I know - over dramatization here on my part - that I was being evil/bad with my results (actually - I was at that time – watering down my urine samples - like WHATEVER – the blood draw revealed the truth as we all know). I was undergoing a year long journey towards a delightful DKA adventure – unbeknownst to my Mum –as she’d handed the reins over to me for my diabetes control at an earlier stage than most D-parents (T3’s) would do these days (aka she trusted me). A diabetic diagnosed as a child never forgets things like this (for any parents reading my scribbles – take note).
Now let us skip 40+ years later (I know, I know, insulin has kept me looking far younger than my “real” age – do not compliment me on my model looks ) and I'm finding out that with my fights with controlling my BG to remain stable - not going low so often or high in my BG - that I'm sensitive to insulin. I'm finally understanding that I need less insulin at certain times of the day (and when I say less - it's almost like I'm CURED) - and I'm tweaking my insulin pump programming to relate to my sensitivity to the insulin I give (next step will be seeing how I can transfer this knowledge to Lantus when I go to multiple dose injecting (MDI) again - with the i-port being used for my NovoRapid - aka bolus insulin).
Again, though, as Dr. Nebergall points out – even with tight control (which we “try” to do – without diabetes taking over our lives to the point of insanity) – things go amuck – and here comes that word “brittle” again from Dr. Nebergall …
“These are the diabetics, even practicing tight control, whose blood glucose level "over-reacts" to minute changes in diet, exercise, and/or insulin. These individuals experience unpredictable rises and swoops in blood glucose, within very short periods, as the result of very small departures from schedule. Small changes "break" their control, and they are thus said to be "brittle.”
I had considered islet cell transplant about 15 years ago in Edmonton – and human guinea pigs were being asked to step up. I did – despite my endo’s disapproval (just like he was with my going on a pump) – but I didn’t qualify as I didn’t meet the criteria. The way I comprehended my refusal was I had to be almost on deaths door step, and some of the recipients of the islets in the beginning that I read about – were indeed close to dying (kidney failure, etc.). Now fast forward and they are screaming for participants. The other islet cell transplant that had peaked my curiosity has been the Auckland Island porcine islets– that’s still ongoing (no results yet have been published).
So, the jist of Chris’s blog is that he had just about sunk as low as he could - with dealing with low blood sugars that the last few times had caused great distress to himself and his family members. He cannot live alone due to his being unaware when his BG's drop down. He cannot exercise due to the sudden drops that occur. It's not really life to him - and I don't blame him in what he's undertaking in the hopes that the expense of the drugs he'll have to take for the rest of his life for antirejection - will give him back a better control of his life.
I’ll be following his blog about the steps he's taking in preparing for the islet transplant. I'm just hoping that this will make his life better - and give him a greater outlook on life with diabetes – even if it means a little jab of the juice of life now and then – but more control of his BG’s and outcome on living.
Do you know the annual cost of managing your diabetes? Would you like to find ways to reduce your costs? Calculate your total budget and identify ways to save money. You can do this in just a few minutes by entering facts about the products you use. This quick analysis will provide you with a comprehensive overview of both spending and potential savings.
Blood glucose monitors offer an easy way to test your blood sugar at home or on the go. Use this comparison tool as a guide to learn more about the features and benefits of your current monitor or to find a new one.
Ever wonder if you are at a healthy weight? Then enter your height and weight in our advanced Body Mass Index (BMI) calculator. This tool provides you with two important numbers reflecting the estimated impact of your present body weight and shape upon your overall health.