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Post by babaoriley on Mar 12, 2019 1:46:31 GMT -5
JEvans, some awfully good advice for you in this thread. Nice job, folks!
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Post by akemp3000 on Mar 12, 2019 5:08:29 GMT -5
Agreed baba. Some really great people here wanting to help. The Afrezza Jake video is the best I've seen. I am forwarding it to everyone possible. I hope we get an update on this thread regarding Al, the horse trainer. It's a sad situation that has the potential to be another great turnaround story. It's hopeful she regains control of her diabetes instead of living at the mercy of an old school endo who follows ADA protocol and recommends a barbaric solution. I hope the endo gets to see how her quality of life improves. Maybe they could swing by and have lunch with Dr. Kendall to discuss further  |
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Post by sayhey24 on Mar 12, 2019 5:33:19 GMT -5
JEvans - the easiest place to start with a pump user is using afrezza for corrections or meal time bolusing. If you know a doctor and can get a script buy her a box www.insulinsavings.com and then buy her a bowl of ice cream and have her try it. The purchase site says it ended in February but its still active. I would be nice if they updated the words. |
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Post by sportsrancho on Mar 12, 2019 5:40:57 GMT -5
DOCTORS NEAR ZIP 91361 YAROSLAV GOFNUNGENDOCRINOLOGY 1250 LA VENTA DR, WESTLAKE VILLAGE, CA 91361 818-487-0040 NA SHENENDOCRINOLOGY 100 MOODY CT, THOUSAND OAKS, CA 91360 805-418-3500 This sounds like the UCLA Doctors. Dr, Yaroslav is actually the 1st Dr I visited upon my Thyroid diagnoses about 5 years ago. At that time he had not prescribed Afrezza, but good to know he and UCLA are on board now. Thank you I'm thinking VDex might be a more informative place to go to get someone over the fear of changing and managing insulin's and delivery options. Everyone's responses are so positive. Thanks again I can’t think of any better advice than what was given on this thread, but I’m just going to agree with you and say Vdex:-) Nothing like personal one on one help ..getting it right the first time around. |
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Post by mnholdem on Mar 12, 2019 6:19:37 GMT -5
Horse trainers are typically self-employed and without medical insurance unless covered by a spouse's policy, so cost could be an issue. Pumps aren't exactly cheap, but neither is Afrezza out of pocket, so the current plans being promoted by MannKind may be a good opportunity to give Afrezza a try. Considering her location, it may be worthwhile to suggest a visit to VDex if for nothing other than to get more information.  |
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Post by dh4mizzou on Mar 12, 2019 6:57:15 GMT -5
Once you're done getting her to a new doctor I'd suggest making up flyers and passing them out right in front of her current endo's doors. The flyer should say something like 'why are you going to a doctor that doesn't put YOUR health concerns first"' and then include the story of your friend.
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Post by uvula on Mar 12, 2019 7:58:13 GMT -5
YOU ARE ALL MISSING THE OBVIOUS PROBLEM. This lady should have a cgm like dexcom so that she knows if the pump is not working properly. And she needs it immediately.
After this she can pursue afrezza.
If she already has a cgm then we are missing some details of her situation.
If she doesn't have a cgm and her doctor never suggested a cgm then her doctor should be reported and she needs a new doctor.
(Standard disclaimer. I'm not a diabetic or a medical professional. )
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Post by agedhippie on Mar 12, 2019 8:37:07 GMT -5
Hello everyone, I am a long time share holder of Mannkind and I know this forum is generally about the money, but I have a request for help! My young daughters horse trainer who I'll call, "Al", who we all adore is a type 1 diabetic and has been since she was a young girl. Now in her 30's she's been on a pump for approximately 13 years. According to Al, her Endo will not even consider Afrezza. Al has had this doctor for a very long time. She is fearful of dying without the pump. I'm not sure if it's because of her Dr. or if her own reality of having lived with this for so long, that she doesn't know anything different. She had never heard of Afrezza prior to us suggesting it to her a few years ago. But, her Doctor is adamant about not using Afrezza and I don't know if he's even heard of it or if he even is prescribing it. Al is a super, super sweet beautiful woman who my daughter loves so much and Al is just this live, vivacious girl, trainer, friend, who you wouldn't even know is always getting sick because of the failing of the pumps delivering her insulin or her insulin itself. She is very proud and doesn't talk about it much. The problem is, Al is either really sick, or in the Urgent Care every other month. Recently, she passed out and was found unconsciousness in her car where she almost died. Something went wrong with her pump. We live in Westlake, Ca, 5 minutes from MC. I've seen posts that people are getting off their pumps with Afrezza, I just don't know enough about the process on how to help her and if Afrezza can work for her. I've been a believer in Afrezza since the day I invested in it. Can anyone help? You bet she is scared of dying if she comes off the pump. This is one of those things a lot of people overlook - this is a condition that will easily kill you in a matter of hours and that is something you are always very aware of. She is a long term diabetic, and given how long she has been on a pump at that time insurers had to be fought tooth and nail for a pump so it must have been seen as important. My guess is that the pump gave her a lot more stability than she had before and you are now asking her to stop. Pumps fail to deliver insulin because of occlusions or pump failure. If the description is accurate I am guessing these are occlusions which are blockages in the tubing that obstruct the insulin flow. Pump failures happen but they are very rare, maybe one every few years, and overdosing failures are an order of magnitude rare than that. Certainly the manufacturer will insist on replacing the pump after a failure because they want it back to analyze the fault. As to Urgent Care, the question would be why? Is it because she is hypo, hyper, dehydrated, or even something not diabetes related? Does she have other conditions that she doesn't want to talk about (since she is described as. "She is very proud and doesn't talk about it much.") I suspect that an attempt to sell her Afrezza is not going to end well as she would see it as people interfering in her private affairs. If you really want to do this I would find another diabetic she knows and trusts and get them to help. People mean well, but it often doesn't seem like it when you are on the receiving end (from personal experience. Not related to this forum btw.) |
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Post by agedhippie on Mar 12, 2019 8:38:38 GMT -5
YOU ARE ALL MISSING THE OBVIOUS PROBLEM. This lady should have a cgm like dexcom so that she knows if the pump is not working properly. And she needs it immediately. After this she can pursue afrezza. If she already has a cgm then we are missing some details of her situation. If she doesn't have a cgm and her doctor never suggested a cgm then her doctor should be reported and she needs a new doctor. (Standard disclaimer. I'm not a diabetic or a medical professional. ) Yes. A CGM would let her see issues before they became problems and avoid a lot of these issues. |
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Post by novafett on Mar 12, 2019 8:56:04 GMT -5
My heart goes out to this young lady. I hope you keep us posted on what happens here. Just reading it over and getting a quick glimpse into her story I'm afraid she may end up just staying with 'what she's known all along' until something terrible happens. I know for myself I'm always afraid to try new things until someone comes along and personally shows me how great the new thing is. You'd think after all these years I'd learn. So to echo some of the above, it would really be great for her to have an advocate speak to her personally face to face on the merits of change and especially if that advocate was someone who's gone through the same transition that she would have to go through. Throwing a bunch of links, phone numbers, and even videos at her might not help at all. Though the video is probably second best to a face to face as she at least will see someone who she might relate to. Keep us posted! Feel like this one could fall through the cracks  |
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Post by sportsrancho on Mar 12, 2019 9:27:55 GMT -5
I’m very familiar with stubborn horse trainers I used to work for one, and I’m a stubborn personal trainer, independent contractor..we’re all like that. We work for ourselves, we don’t like people telling us what to do.
You can have her call me. DM for my number. ( If you like ) I’ll explain who Sam is and get her hooked up with him or Laureen.
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Post by sellhighdrinklow on Mar 12, 2019 9:31:25 GMT -5
Hello everyone, I am a long time share holder of Mannkind and I know this forum is generally about the money, but I have a request for help! My young daughters horse trainer who I'll call, "Al", who we all adore is a type 1 diabetic and has been since she was a young girl. Now in her 30's she's been on a pump for approximately 13 years. According to Al, her Endo will not even consider Afrezza. Al has had this doctor for a very long time. She is fearful of dying without the pump. I'm not sure if it's because of her Dr. or if her own reality of having lived with this for so long, that she doesn't know anything different. She had never heard of Afrezza prior to us suggesting it to her a few years ago. But, her Doctor is adamant about not using Afrezza and I don't know if he's even heard of it or if he even is prescribing it. Al is a super, super sweet beautiful woman who my daughter loves so much and Al is just this live, vivacious girl, trainer, friend, who you wouldn't even know is always getting sick because of the failing of the pumps delivering her insulin or her insulin itself. She is very proud and doesn't talk about it much. The problem is, Al is either really sick, or in the Urgent Care every other month. Recently, she passed out and was found unconsciousness in her car where she almost died. Something went wrong with her pump. We live in Westlake, Ca, 5 minutes from MC. I've seen posts that people are getting off their pumps with Afrezza, I just don't know enough about the process on how to help her and if Afrezza can work for her. I've been a believer in Afrezza since the day I invested in it. Can anyone help? You bet she is scared of dying if she comes off the pump. This is one of those things a lot of people overlook - this is a condition that will easily kill you in a matter of hours and that is something you are always very aware of. She is a long term diabetic, and given how long she has been on a pump at that time insurers had to be fought tooth and nail for a pump so it must have been seen as important. My guess is that the pump gave her a lot more stability than she had before and you are now asking her to stop. Pumps fail to deliver insulin because of occlusions or pump failure. If the description is accurate I am guessing these are occlusions which are blockages in the tubing that obstruct the insulin flow. Pump failures happen but they are very rare, maybe one every few years, and overdosing failures are an order of magnitude rare than that. Certainly the manufacturer will insist on replacing the pump after a failure because they want it back to analyze the fault. As to Urgent Care, the question would be why? Is it because she is hypo, hyper, dehydrated, or even something not diabetes related? Does she have other conditions that she doesn't want to talk about (since she is described as. "She is very proud and doesn't talk about it much.") I suspect that an attempt to sell her Afrezza is not going to end well as she would see it as people interfering in her private affairs. If you really want to do this I would find another diabetic she knows and trusts and get them to help. People mean well, but it often doesn't seem like it when you are on the receiving end (from personal experience. Not related to this forum btw.) Do you really believe that a Type 1 will die within a few hours of being removed from their pump? That's factually inaccurate to say the least. Quite the roundabout way you have to try to dissuade someone from helping someone getting off the pump who is obviously having problems with it. But then again you spout negativity at 98% of the turns here w regard to Afrezza. |
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Post by mannmade on Mar 12, 2019 9:31:53 GMT -5
Yes I would try a Vdex. I believe they have an office in Caniga Park which is not too far. Am not sure if the hours.
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Post by uvula on Mar 12, 2019 9:51:40 GMT -5
You bet she is scared of dying if she comes off the pump. This is one of those things a lot of people overlook - this is a condition that will easily kill you in a matter of hours and that is something you are always very aware of. She is a long term diabetic, and given how long she has been on a pump at that time insurers had to be fought tooth and nail for a pump so it must have been seen as important. My guess is that the pump gave her a lot more stability than she had before and you are now asking her to stop. Pumps fail to deliver insulin because of occlusions or pump failure. If the description is accurate I am guessing these are occlusions which are blockages in the tubing that obstruct the insulin flow. Pump failures happen but they are very rare, maybe one every few years, and overdosing failures are an order of magnitude rare than that. Certainly the manufacturer will insist on replacing the pump after a failure because they want it back to analyze the fault. As to Urgent Care, the question would be why? Is it because she is hypo, hyper, dehydrated, or even something not diabetes related? Does she have other conditions that she doesn't want to talk about (since she is described as. "She is very proud and doesn't talk about it much.") I suspect that an attempt to sell her Afrezza is not going to end well as she would see it as people interfering in her private affairs. If you really want to do this I would find another diabetic she knows and trusts and get them to help. People mean well, but it often doesn't seem like it when you are on the receiving end (from personal experience. Not related to this forum btw.) Do you really believe that a Type 1 will die within a few hours of being removed from their pump? That's factually inaccurate to say the least. Quite the roundabout way you have to try to dissuade someone from helping someone getting off the pump who is obviously having problems with it. But then again you spout negativity at 98% of the turns here w regard to Afrezza. Some people are so hell bent on destroying agedhippie that they are losing their objectivity. The goal is not to get her to switch from a pump to afrezza. The goal is to get her to a safer stable place. There is so much information that we don't have and the OP doesn't have. |
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Post by sportsrancho on Mar 12, 2019 10:45:11 GMT -5
Well that was a little much I’ll have to say:-)
Try not to get it in your head that it’s hard to approach people, that they aren’t going to want to listen because that’s just not true 98% of the time ..when you have in your hand the Dreamboat you’ve got the iPhone of insulin. A secret most people don’t know about. And you get to tell them, it’s beyond fun!
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