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Blog: Anna's Blog
Posted: Nov 25, 2013
Have you ever considered islet cell transplant?
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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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)
Related posts:Keeping track | My 13 year old self describing her DKA in the 70's | Edmonton man denied insulin for 20 hours | Twist and Shout – Sleep Apnoea | When You're Hot, You're Hot | My First Night with Dexcom G4 CGMS | Carb Counting | Home Stretch | Flying high and I'm afraid of heights | NO DELIVERY
Blog: Anna's Blog
Posted: Sep 8, 2011
Okay - if you've never heard of CouchSurfing - here's the low down - you register at the website - and viola - when you are going on your worldly travels - you can connect up with other like minded souls and the following statement says it all that is posted at the website - "CouchSurfing is turning a missed train into an opportunity for a new adventure. Starting a weekly dinner party. Teaching your kids about other cultures from your home. Getting advice for your next trip. Engaging with the world in a whole new way. ". So far, since registering a few years ago I haven't taken advantage of it, more so, because my DH isn't too sure about opening up our home to "strangers" - but I think I may have changed his views on the long weekend past.
I finally met up with Ginger Vieira back in July when we "performed" in her friends Dana Heffern's show called "The Antidote". We only got to spend abit of time as she was having to head off to the DLife headquarters in Connecticut right after the show that night but she offered me her place to stay as I wasn't feeling like making the 3 hour drive back to Montreal! Sadly, I'd already booked a little motel nearby the college - but I felt so overwhelmed by her trust in allowing someone she really didn't know - to stay at her place. We really only knew each other through the D-OC (Diabetic Online Community) - that was it.
Last week on Facebook, she was mentioning that she was coming to Montreal for the long weekend and asked for some suggestions of places to stay. Guess what? I offered her and her friend Allison Schauwecker to stay at our house (on the condition they take care of our rug rats aka pusscats since we were going away sailing on Jenna's Journey) - the cats need their slaves!
It was fun getting the house ready for my visitors from abroad - even better it gave me an excuse to clean (yuppers I'm not a big fan of getting rid of dust bunnies they are meant to be free). Now, was it because both of them are diabetic that I was enjoying this usually much despised chore? All I know is that it made for neat to put out little things like juice boxes beside their bed stand, spare bits and pieces (e.g. - if they needed insulin - they just had to go into the "Deli Drawer" of the fridge) that I knew we diabetics need!
If I'd had more time, I would have made gluten free bread for Ginger (psst - did you notice the September issue of Chatelaine - with GLUTEN free recipes?).
Anyway, coming home on Tuesday, I knew my cats had been taken care of by two lovely young ladies (Mia was spoiled by Ginger) and the beautiful flowers in my kitchen that they had left. Along with some great little notes that I'm keeping forever really made me smile and appreciate what the D-OC has brought into my life.
As Ginger/Allison wrote in one of their notes to me .....
So, if you're ever visiting Montreal - need a place to rest your weary head at night - you know who to contact - Diabetes CouchSurfing!!!
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Tags: cats (43) blog (28) kids (1) gluten (1) CouchSurfing (1) Ginger Vieira (1) DLife (1) D-OC (1)
Related posts:Surviving the Holocaust with Type 1 diabetes | Diabetes Expo | Victoza and lactose intolerance - or could it be something else? | Too Brittle - Chris Miller on his islet cell transplant journey | The Big Blue Test on World Diabetes Day - November 14th, 2009 | World Diabetes Day - Wear BLUE! | Diabetes Blog Week - AWESOME THINGS | Dana Heffern : Antidote Performance (on your screen NOW) | The Antidote | Brownie in a Mug (FatCatAnna Style)