Post by rockstarrick on May 12, 2016 9:02:38 GMT -5
courtesy of pahelgreg
An open thank-you letter to Mannkind and the people behind Afrezza
Thank you Mannkind team. Thank you for giving me the tools to get my life back from diabetes. Thank you for giving my family the chance from getting our life back from diabetes. As my wife put it when a friend ask her how Afrezza was working for me: “I can see him turning from black &white into full technicolor”. Me and my family we all hope, we pray, for Afrezza to survive so we can keep enjoying this new “diabetes-free” life, and hopefully others can benefit from this revolutionary drug as well.
My story probably is different from most users that benefited from Afrezza. I had T1D for the last 20+ year, using multiple day injections, and on the pump/cgm since 2012. I always had very good control of my T1D (A1C between 6 and 7). But at a very high cost: Carbs where my enemy. I dreaded change. I avoided situations where I had to be still for long periods of time. As a family, we really avoided road trips (I would stop the car to take walks because the freaking insulin wasn’t fast enough). My moods were always tied to my success, or lack of, my control. So anything that produced the smallest modification to my meticulous routine, would then go into my list of “things to avoid in the future”. Conferences, oh god, I really didn’t like those: you are stuck in a room, sugar starts raising because of whatever, and you can’t get out. The feeling of marinating in your own poisonous glucose chasing me all the time. And counting carbs. I am really good at that. I counted and weighted everything. And when I couldn’t, I wouldn’t eat it. I was thinking about diabetes every single second of the day. And nights. Nights. Nights for me were always an unknown. I really think one of the worst things about T1D is the impact on sleep quality. For me, having a night without interruptions was a luxury, and a rarity. So with all of this in my head, my level of anxiety because of diabetes, and my family’s anxiety, was constantly high, very high.
But here is the incredible thing: We human beings are resilient. I got used to this. This was the normality. Which is why I really hadn’t realized about the craziness of my life until I started using Afrezza. And to be clear, I didn’t start using Afrezza because I wanted a better life. I thought I had a good life, or at least that was the best it would get. I am a triathlete. And it was exercise what motivated me to try something different. I was just sick and tired of injected insulin and how it takes too long to act, and stays longer than needed. And this made my triathlon training very energy-consuming. I had to plan my day by the hour to make sure that I could train in the afternoon without crashing with a severe low.
So I started looking for new things. I almost got into the whole do-it-yourself closed loop “artificial pancreas” movement. And then I heard about Afrezza, I think on Twitter. The first step was convincing my endo: “why do you need this if you have great control already?”. This is a key piece of the story. It’s very hard for anyone other than the diabetic and his loved ones to know what absolutely incredibly hard it is to live with diabetes. And I told her that I just wanted to get rid of the whole “insulin on board / stacking” issues with insulin and exercise. She is smart and trusts me, so she approved.
The first couple of days where tough and fascinating: Wow, this is one heck of a fast insulin! And, I was trying to use Afrezza using the strategy of injected. It didn’t help that the Afrezza instructions tried to do the units matching as well. I was suffering what I named the Afrezza “seesaw effect”: I would take Afrezza, the thing would act quickly, it would look as I was going to crash, so I over corrected, then Afrezza would go away as it has a short tail, so my glucose would go up again. And so on. But then I got the basics. By the third day I was already seeing the benefits with exercise: Look, I can eat carbs a couple of hours before exercise, then do my training, and I wouldn’t have a violent low sugar episode. Amazing!
That was just the start of the Afrezza goodness. As I used Afrezza more and more, I would start noticing all these little things that made my daily life, that I was doing or not doing because of diabetes. Eating after a long workout required planning and waiting at least 20 minutes. Breakfast used to be no-carbs because I would then get in the car to go to the office. I almost avoided carbs while in the office, as sitting down made insulin work slow. I had to interrupt my work to go for walks not because I wanted, but because my glucose levels where rising as I had that little piece of bread with lunch. And so on, it’s a never ending list of things. All of these diabetes-imposed activities, tasks, or rituals, stopped with Afrezza. I could now basically do whatever I wanted when I wanted, with no diabetes anxiety at all. I was in control of my life again. Eating carbs and then having a nap? Yes! Or going for a walk with no fear of having a severe low? Indeed! A fruit binge? Bring it on. Being spontaneous? Yep.
After three weeks on Afrezza, I realized that all the complex custom basals I used with the pump where there because of the way injected works, with all the stacking and IOB complexity. Eliminate that, and the pump became pointless for me. I was pump free! I really don’t miss having a beeper stuck to my butt 24 hours a day, that’s for sure.
3 months into Afrezza I went to the doc and got my A1C: It went down from 6.5 to 5.4, and with 1/10 of the effort. Incredible. Also other health metrics where much better: My cholesterol was down, my lean mass had increased, and overall I had never felt better before in many years. I have had my best triathlon season so far this year, and Afrezza played a key role there.
I am now at almost the year mark. In the last months what I noticed as I absorbed this new normality, is that sometimes during the day I was not thinking about diabetes. At all. This is so huge. I was not thinking about diabetes. And it’s because I know I am always in control, and nothing diabetes throws at me will screw the rest of my day and maybe the next one. It’s a liberating experience. The only thing I carry now with me when I go out is my inhaler and some Afrezza, that’s it. I am living a mostly non-diabetic life. And now, after some tweaking, even my nights are non-eventful most of the days.
For diabetics, usually the tighter your control, the further away from a non-diabetic life we get. That used to be me. Now I can have both non-diabetic numbers AND a mostly non-diabetic life. And my family can enjoy an incredibly much better life with me because of this.
As I said at the beginning, thank you Mannkind team for Afrezza. I hope me and millions of others can keep benefiting from this wonderful invention.
Cheers,
Gustavo Basualdo
Twitter: @guasaman
An open thank-you letter to Mannkind and the people behind Afrezza
Thank you Mannkind team. Thank you for giving me the tools to get my life back from diabetes. Thank you for giving my family the chance from getting our life back from diabetes. As my wife put it when a friend ask her how Afrezza was working for me: “I can see him turning from black &white into full technicolor”. Me and my family we all hope, we pray, for Afrezza to survive so we can keep enjoying this new “diabetes-free” life, and hopefully others can benefit from this revolutionary drug as well.
My story probably is different from most users that benefited from Afrezza. I had T1D for the last 20+ year, using multiple day injections, and on the pump/cgm since 2012. I always had very good control of my T1D (A1C between 6 and 7). But at a very high cost: Carbs where my enemy. I dreaded change. I avoided situations where I had to be still for long periods of time. As a family, we really avoided road trips (I would stop the car to take walks because the freaking insulin wasn’t fast enough). My moods were always tied to my success, or lack of, my control. So anything that produced the smallest modification to my meticulous routine, would then go into my list of “things to avoid in the future”. Conferences, oh god, I really didn’t like those: you are stuck in a room, sugar starts raising because of whatever, and you can’t get out. The feeling of marinating in your own poisonous glucose chasing me all the time. And counting carbs. I am really good at that. I counted and weighted everything. And when I couldn’t, I wouldn’t eat it. I was thinking about diabetes every single second of the day. And nights. Nights. Nights for me were always an unknown. I really think one of the worst things about T1D is the impact on sleep quality. For me, having a night without interruptions was a luxury, and a rarity. So with all of this in my head, my level of anxiety because of diabetes, and my family’s anxiety, was constantly high, very high.
But here is the incredible thing: We human beings are resilient. I got used to this. This was the normality. Which is why I really hadn’t realized about the craziness of my life until I started using Afrezza. And to be clear, I didn’t start using Afrezza because I wanted a better life. I thought I had a good life, or at least that was the best it would get. I am a triathlete. And it was exercise what motivated me to try something different. I was just sick and tired of injected insulin and how it takes too long to act, and stays longer than needed. And this made my triathlon training very energy-consuming. I had to plan my day by the hour to make sure that I could train in the afternoon without crashing with a severe low.
So I started looking for new things. I almost got into the whole do-it-yourself closed loop “artificial pancreas” movement. And then I heard about Afrezza, I think on Twitter. The first step was convincing my endo: “why do you need this if you have great control already?”. This is a key piece of the story. It’s very hard for anyone other than the diabetic and his loved ones to know what absolutely incredibly hard it is to live with diabetes. And I told her that I just wanted to get rid of the whole “insulin on board / stacking” issues with insulin and exercise. She is smart and trusts me, so she approved.
The first couple of days where tough and fascinating: Wow, this is one heck of a fast insulin! And, I was trying to use Afrezza using the strategy of injected. It didn’t help that the Afrezza instructions tried to do the units matching as well. I was suffering what I named the Afrezza “seesaw effect”: I would take Afrezza, the thing would act quickly, it would look as I was going to crash, so I over corrected, then Afrezza would go away as it has a short tail, so my glucose would go up again. And so on. But then I got the basics. By the third day I was already seeing the benefits with exercise: Look, I can eat carbs a couple of hours before exercise, then do my training, and I wouldn’t have a violent low sugar episode. Amazing!
That was just the start of the Afrezza goodness. As I used Afrezza more and more, I would start noticing all these little things that made my daily life, that I was doing or not doing because of diabetes. Eating after a long workout required planning and waiting at least 20 minutes. Breakfast used to be no-carbs because I would then get in the car to go to the office. I almost avoided carbs while in the office, as sitting down made insulin work slow. I had to interrupt my work to go for walks not because I wanted, but because my glucose levels where rising as I had that little piece of bread with lunch. And so on, it’s a never ending list of things. All of these diabetes-imposed activities, tasks, or rituals, stopped with Afrezza. I could now basically do whatever I wanted when I wanted, with no diabetes anxiety at all. I was in control of my life again. Eating carbs and then having a nap? Yes! Or going for a walk with no fear of having a severe low? Indeed! A fruit binge? Bring it on. Being spontaneous? Yep.
After three weeks on Afrezza, I realized that all the complex custom basals I used with the pump where there because of the way injected works, with all the stacking and IOB complexity. Eliminate that, and the pump became pointless for me. I was pump free! I really don’t miss having a beeper stuck to my butt 24 hours a day, that’s for sure.
3 months into Afrezza I went to the doc and got my A1C: It went down from 6.5 to 5.4, and with 1/10 of the effort. Incredible. Also other health metrics where much better: My cholesterol was down, my lean mass had increased, and overall I had never felt better before in many years. I have had my best triathlon season so far this year, and Afrezza played a key role there.
I am now at almost the year mark. In the last months what I noticed as I absorbed this new normality, is that sometimes during the day I was not thinking about diabetes. At all. This is so huge. I was not thinking about diabetes. And it’s because I know I am always in control, and nothing diabetes throws at me will screw the rest of my day and maybe the next one. It’s a liberating experience. The only thing I carry now with me when I go out is my inhaler and some Afrezza, that’s it. I am living a mostly non-diabetic life. And now, after some tweaking, even my nights are non-eventful most of the days.
For diabetics, usually the tighter your control, the further away from a non-diabetic life we get. That used to be me. Now I can have both non-diabetic numbers AND a mostly non-diabetic life. And my family can enjoy an incredibly much better life with me because of this.
As I said at the beginning, thank you Mannkind team for Afrezza. I hope me and millions of others can keep benefiting from this wonderful invention.
Cheers,
Gustavo Basualdo
Twitter: @guasaman
