He is the most interesting man in the world.
The "he", fyi, is Ed Damiano...a biomedical engineer turned Artificial Pancreas guru, and father of a type 1 child with diabetes. (and a speaker this year at Friends for Life. Perhaps he has been other years, but I've been kind of out of the loop. I was excited to hear his talk this year, to find out exactly how the Massachusetts clinical trials are going. (very well, apparently. On track to submit to the FDA in 2016, perhaps on time to be approved in time for his son to go off to college in 2017). And I was impressed by his drive (and smarts), but namely, I needed one very important question answered before I threw my approval to this particular artificial pancreas attempt.
NEWS FLASH: THERE ARE MULTIPLE ARTIFICIAL PANCREAS TRIALS GOING ON ALL OVER THE US, AND THE WORLD. I'VE GOTTEN A BIT TIRED OF HEARING ABOUT MEDTRONICS VEO SUSPEND(NO THANKS, DON'T TRUST IT) AND YES, EVEN DAMIANO'S. THE UNIVERSITY OF VIRGINIA HAS A VERY PROMISING ONE, THAT MIGHT JUST BEAT THE SOCKS OFF DAMIANO
'S.
Back to the topic at hand..oh yes, Damiano's trial. His system uses a dual chamber glucogon/insulin combo, and releases each, as needed. (other systems are solely focused on the insulin/suspend parts) My concern would be as to whether or not getting all that glucagon might make the user sick/nauseated, which Damiano assured me that the amount of glucogon released in the "microspurts" was only 1/8 of a standard glucogon dose and hadn't made anyone sick, to date.(I knew of a person in his trial who had gotten sick,and she assumed it to be from the glucogon. She had to drop out.) I mean, I guess a functioning pancreas does just that(release glucagon as needed) so it's not exactly a foreign substance to the body. (long term studies on this are still unknown though) By the end, I was thinking alot more highly of his AP then previously. (glucagon plus insulin just makes sense, and MIGHT keep the bg more stable then just insulin. But I dunno, because UVA's is also one sweet piece of technology and at this point I think I'd take any AP that was given to me) His system differs in one other key regard...it adjusts to the changing needs of the user. (not "fixed" on insulin: carb ratios and the like. Life is fluid, insulin needs are fluid, everything is always changing. And if my brain was an artificial pancreas I could do a heck of a lot better with managing my diabetes.(there are always so many variables that need adjusting for)
That session, regardless of my particular opinion, had every person in the room really excited and ready to go and sign up the very next week.(I get that, I do. It is cool beans, and if I lived around there I'd probably also want to be involved). But my involvement has been/and will be with the UVA project. (and then, I got an email from a clinical coordinator at UVA...which led to me being more excited for their project, then for Damiano's.) Still, anyone who has a desire to be in a clinical trial (esp. an AP one) should be.
Tomorrow I'm going in for a screening study. I'm excited to be a part of making a better world, for everyone with diabetes. (regardless of who wins this "AP" battle.)
(cross fingers and toes that I'll get in! I think the only thing that might preclude me from that, is whether my thyroid tests are in-range. I've been pretty bad lately over taking my thyroid pill.)
Showing posts with label artificial pancreas project. Show all posts
Showing posts with label artificial pancreas project. Show all posts
Tuesday, July 23, 2013
Friday, October 15, 2010
Random Friday Blobs
#1 I'm home today,quite unexpectedly,the plan was for another research study visit. However, the research coordinator is MIA (really, really, not like her..no email or phone confirmation, and phone messages go straight to voice mail) and I am not driving 8 hours round trip without some sort of confirmation. Call me unreasonable,but you can't even get into the building(unless someone lets you in) & I am not making that trip for nothing. I'm kind of worried about her,because she also has diabetes and I just hope she is ok. I also hope someone answers her voicemail & tells me what to do next, because I'm days away from (study supply) depletion, and while I have no problem using my own, I really don't think that is protocol & I don't wish to be kicked out of the study for that. I have the endocrinologist's (home) phone number,& may use it(I think this classifies as worthy to be bugged about)
#2 Hand Surgeon is back from his vacation,& a date is now set in stone.Unfortunately(again,sheesh, is this Friday the 13th?) the two (date) options were November 10 (wedding anniversary) or December 8. I really don't want to have surgery on November 10,but waiting till December really seems un-doable,it hurts too much. The only good thing about it is diabetics always get moved to one of the first surgeries of the day,because we've been fasting and might crash and burn if they don't do it asap. Not true, when one is on a pump,but I am not one to look a gift horse in the mouth,let them believe what they want to believe. It won't be hand surgery,it's at the elbow-an anterior transposition of the ulnar nerve (sub-muscularly,which the surgeon feels is more effective for thin,younger patients). Cast for 10 days.(no blogging/Internet except for what I can do one handed) Goodbye, (online) social life. I am glad I am in this research study, though,because it is a heck of a lot easier to fill/insert an Omnipod one-handed then it is a traditional set.(or reservoir fill) As for the Dexcom..I may just put one in right before and hope it lasts 10 days. It's darned if you do, and darned if you don't sometimes..you can only hope & pray that surgery does more good then harm.
I want it to fix everything but I'm aware that in some people,it causes permanent damage.
#3 On October 6, the diabetes community was saddened by the passing of Christopher Saudek,MD an endocrinologist at Johns Hopkins, and a real insulin pump pioneer. I enjoyed his talks with the local pump group,& he was a really nice, decent,interesting individual.(far and beyond his passion for all things diabetes) His is a legacy rich in helping thousands of people with diabetes (throughout his 35 years in practice) Unfortunately, he didn't get to see a cure but he believed in one passionately. I will never forget him.
(he wrote this book,and autographed it for me)
#2 Hand Surgeon is back from his vacation,& a date is now set in stone.Unfortunately(again,sheesh, is this Friday the 13th?) the two (date) options were November 10 (wedding anniversary) or December 8. I really don't want to have surgery on November 10,but waiting till December really seems un-doable,it hurts too much. The only good thing about it is diabetics always get moved to one of the first surgeries of the day,because we've been fasting and might crash and burn if they don't do it asap. Not true, when one is on a pump,but I am not one to look a gift horse in the mouth,let them believe what they want to believe. It won't be hand surgery,it's at the elbow-an anterior transposition of the ulnar nerve (sub-muscularly,which the surgeon feels is more effective for thin,younger patients). Cast for 10 days.(no blogging/Internet except for what I can do one handed) Goodbye, (online) social life. I am glad I am in this research study, though,because it is a heck of a lot easier to fill/insert an Omnipod one-handed then it is a traditional set.(or reservoir fill) As for the Dexcom..I may just put one in right before and hope it lasts 10 days. It's darned if you do, and darned if you don't sometimes..you can only hope & pray that surgery does more good then harm.
I want it to fix everything but I'm aware that in some people,it causes permanent damage.
#3 On October 6, the diabetes community was saddened by the passing of Christopher Saudek,MD an endocrinologist at Johns Hopkins, and a real insulin pump pioneer. I enjoyed his talks with the local pump group,& he was a really nice, decent,interesting individual.(far and beyond his passion for all things diabetes) His is a legacy rich in helping thousands of people with diabetes (throughout his 35 years in practice) Unfortunately, he didn't get to see a cure but he believed in one passionately. I will never forget him.
(he wrote this book,and autographed it for me)
Wednesday, October 06, 2010
Life as a Pancreas: Part I
I no longer doubt what my next a1c will be.
.JPG)
Granted, I don't know the precise number, but I'm sure it will be under 7. Yes, sure. (can't say I've ever felt that feeling before) I'm not cured, I have not "gone Atkins", nor am I am in training for an Ironman. (last time I went to the gym? don't ask)I just know that this clinical trial & me were meant to be.
.JPG)
I still have highs, but they're not a daily occurrence. No lows whatsoever in seven days. And that is exactly what the first phase of the Artificial Pancreas is supposed to initiate-elimination of the extremes. Perhaps this is not a huge deal to those who already keep their bgs "tight" but as a card-carrying member of the 250+ club, I could not be more thrilled. (to not go above that, multiple times a day) My TDD has dropped 20%, my insulin/carb ratio's have doubled(1/10 to 1/22) and I do not feel like this is my diabetes anymore. My diabetes loves insanity, not order. In the 70-80 range, I don't feel like stuffing my face(1-2 tabs cure the slight jitters). And the overnight Dexcom reading is not a series in insanity(typical night:either spike,drop,spike drop or monster spike) its either slight drop, or slight rise. Stability is not a River in Egypt..it is possible for me,and possible for anyone. I don't know if it's them,(I go off preprogrammed suggestions most of the time) or just the direct contact of the Omnipod/versus traditional pumping..I suspect it's some of both. (and mandatory 3-day pod changes really, REALLY help)
.JPG)
That being said, it's not all sugar-free cream puffs..my skin doesn't like the Pod tape,& I have some slight rashes from that. I will start using Tegaderm, should it continue to be an issue. I also cannot correct for a high,(premeal) because the Omnipod does not have a food IOB (and invariably, some insulin is still around from the last meal/snack. If I corrected, I would have to eat more, to keep from bottoming out post-meal) I am not happy that it doesn't have meal IOB,but it's something one could get used to. Because my decisions are not truly my own(I'm supposed to be trusting this thing, most of the time) it gets a little tricky, & I'm not really sure what I should be doing. (Study Endo hasn't called me back yet) I want to do what's best for my diabetes care,and it is a "behavioral study" but I'm new to this pump, and have no real clue what I'm doing. Certain things I love, certain things I hate,and certain things I do not know how I feel about it.(as of yet) Had to switch to Freestyle test strips, and as a die-hard One Touch fan that was really, really difficult.(although,bg comparisons showed them to be within five points of each other,so that helped convince me that they are just as (in)accurate) Right now I'm not doing much of anything, besides using the pump/meter/cgm & getting acclimated to it. Friday, I'll begin "tagging" events in the PDM (as previously mentioned, this is primarily an observational phase of the project, and they want to know what makes PWD tick.) That also entails filling out multiple psychological tests like the Beck Depression Inventory,which is every bit as dry & depressing as you may have guessed it is. But it's necessary, so I continue to plow through it.
Granted, I don't know the precise number, but I'm sure it will be under 7. Yes, sure. (can't say I've ever felt that feeling before) I'm not cured, I have not "gone Atkins", nor am I am in training for an Ironman. (last time I went to the gym? don't ask)I just know that this clinical trial & me were meant to be.
I still have highs, but they're not a daily occurrence. No lows whatsoever in seven days. And that is exactly what the first phase of the Artificial Pancreas is supposed to initiate-elimination of the extremes. Perhaps this is not a huge deal to those who already keep their bgs "tight" but as a card-carrying member of the 250+ club, I could not be more thrilled. (to not go above that, multiple times a day) My TDD has dropped 20%, my insulin/carb ratio's have doubled(1/10 to 1/22) and I do not feel like this is my diabetes anymore. My diabetes loves insanity, not order. In the 70-80 range, I don't feel like stuffing my face(1-2 tabs cure the slight jitters). And the overnight Dexcom reading is not a series in insanity(typical night:either spike,drop,spike drop or monster spike) its either slight drop, or slight rise. Stability is not a River in Egypt..it is possible for me,and possible for anyone. I don't know if it's them,(I go off preprogrammed suggestions most of the time) or just the direct contact of the Omnipod/versus traditional pumping..I suspect it's some of both. (and mandatory 3-day pod changes really, REALLY help)
That being said, it's not all sugar-free cream puffs..my skin doesn't like the Pod tape,& I have some slight rashes from that. I will start using Tegaderm, should it continue to be an issue. I also cannot correct for a high,(premeal) because the Omnipod does not have a food IOB (and invariably, some insulin is still around from the last meal/snack. If I corrected, I would have to eat more, to keep from bottoming out post-meal) I am not happy that it doesn't have meal IOB,but it's something one could get used to. Because my decisions are not truly my own(I'm supposed to be trusting this thing, most of the time) it gets a little tricky, & I'm not really sure what I should be doing. (Study Endo hasn't called me back yet) I want to do what's best for my diabetes care,and it is a "behavioral study" but I'm new to this pump, and have no real clue what I'm doing. Certain things I love, certain things I hate,and certain things I do not know how I feel about it.(as of yet) Had to switch to Freestyle test strips, and as a die-hard One Touch fan that was really, really difficult.(although,bg comparisons showed them to be within five points of each other,so that helped convince me that they are just as (in)accurate) Right now I'm not doing much of anything, besides using the pump/meter/cgm & getting acclimated to it. Friday, I'll begin "tagging" events in the PDM (as previously mentioned, this is primarily an observational phase of the project, and they want to know what makes PWD tick.) That also entails filling out multiple psychological tests like the Beck Depression Inventory,which is every bit as dry & depressing as you may have guessed it is. But it's necessary, so I continue to plow through it.
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