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Too Brittle - Chris Miller on his islet cell transplant journey


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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 the name of FatCatAnna.  Feel free to follow me at both places or send me a private message!


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 Blog Entries
The joys of having Bowie my CGMS – Chapter 1 - Sep 02
 Okay, for those of you who have never read my #dblogs before, I give names to all my little gizmos that I use for controlling my diabetes.  What we have today, ...
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In a slump and scared - Jul 21
It’s rare for me to compose a #dblog that is not all “chirpy chirpy” … I think the last time I did one that was kind of down was at Diabetes1.org ...
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Surviving the Holocaust with Type 1 diabetes - Mar 27
  " To the best of my knowledge, I am the only diabetic who survived years of imprisonment in German concentration camps. This is my story "   The above words ...
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Sugar and Your Health - Mar 06
The other day I emptied out a 4 kg (about 10 lbs) of white sugar that I had dated a year ago when I opened it.  I use white sugar purely for cooking (I make my own ...
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Eating from the ground - Yuca Fries - Feb 20
I am home now from a working holiday, in the Bahamas and Miami.  Despite the weather being abit cooler then normal (they only get 2 weeks of winter - we were there in ...
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Posted: Nov 25, 2013 13:13
  • 1 Comment.
  • Too Brittle - Chris Miller on his islet cell transplant journey

    Have you ever considered islet cell transplant?

    Chris Miller's Blog Logo

    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.

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  • By: FatCatAnna: Mar, 21, 2014 12:13 PM

    UPDATE - Sadly, Chris has been asked by the folks at the islet transplant program to no longer post about what is going on with his islet transplant cell experience.  We all found this abit odd (I know I did) to be told this - but in order to not jeopardize his transplant chances, he did as they instructed him to do.  He wants  these islets NOW!!!  LOL

    In order to appease those of us curious with following someone with their step-by-step adventure as he was doing for us - he's managed to encourage another transplant receipient to start writing up a blog about her own experience.  Mellisa's now into her 6th week after the surgery - you can follow how it's going for her at this link.



    Tags:
    Chris Miller (1) blog (1) Too Brittle (1) Edmonton (1) porcine (1) Auckland Island (1) blood sugar (1) BG (1) sensitive (1) brittle (1) islet cell transplant (1)

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