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“As active as I want to be” - Dianne Mattiace uses Eversense CGM to thrive with T1D in her 70s
Manage episode 415430190 series 182538
This week, managing type 1 diabetes into your 70s is a bit of uncharted waters.. While thankfully more and more people are living long with T1D, that wasn’t always the case. I’m taking to Dianne Mattiace who is in her early 70s and was diagnosed as an adult, 30 years ago. She was the first person in the US to use the Eversense CGM when it was approved in 2018 and she’s still using it today. She answers your questions about this implantable CGM, why she’s stayed with it and what else she does to manage in retirement and beyond.
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Episode Transcription:
Stacey Simms 0:00 Diane Matisse. Thanks so much for joining me. Welcome to Diabetes Connections. It's great to talk to you.
Dianne Mattisse 0:04 Thank you so much for having me. Yeah, let's
Stacey Simms 0:07 jump right in. Let's start with your diagnosis story, because you were initially misdiagnosed, right? Take me through what happened? Yes,
Dianne Mattisse 0:15 I was 40 years old. And my family history was type two diabetes. And they actually, as soon as you say that to a physician, and it was a general practitioner, it was not an endocrinologist, they automatically just put that label on me and said, you know, you're another type two in your family. It went on for about three months. And I actually was in the honeymoon phase, which now was not even recognized back then. But I, it was at the time where you're making enough insulin to keep you from going into DKA into ketoacidosis end up in a hospital, but not enough to make you feel well, so my blood sugar's were still rising, the medication they had me on wasn't working. And finally, after, I think about three or four months, well, during that time, I saw an endocrinologist. And he also was doing a lot of testing, even the C peptide, which is now a diagnosis tool wasn't able to be done where I lived, they had to send it out to a lab in Atlanta. So once that was kind of established, he admitted me, and started me on insulin and, you know, multiple injections per day,
Stacey Simms 1:35 why did you What led you to actually seek out an endocrinologist?
Dianne Mattisse 1:39 I was not feeling great with the general doctor treating me and I just kept getting worse and worse. And I was taking oral medications, they weren't all these designer meds that they have now for type twos. Back then it was couple pills. So I was I would call them increase the pills. And as I was increasing the pills over the three or four months, so was my blood sugar increasing, and I kept losing weight. And I'm thinking, well, this is a great diet I'm on I was eating better. But my blood sugar's were going into the three hundreds. So finally, I had been in the medical field before that, actually, it was in the medical field at the time, I was a controller for a nursing home company, but it didn't really have access to a lab or anything like that. I was actually the Regional Controller. And I was on the financial side, right? So I actually went to a lab got my blood sugar taken. I didn't even think to buy a meat or anything like that, which I should have, but I did not. And I kept seeing my blood sugar's go up and up and up. And so I finally just on my own said, I'm gonna go to an endocrinologist. And as soon as I went, he told me, I think you're a type two. And type one, I think you are type one, misdiagnosed as a type two. And let's do some testing. He started he did the C peptide, sent it out, did a bunch of other tests. I have no no recollection. Now, it's been 33 years of what else he did. But over that weekend, so that was like a Friday over that weekend, I just be compensated more I started getting muscle cramps, I called him and he said, go to the hospital Monday morning, seven o'clock and bring a bag you're being admitted. So I did. And he said, I was really on the brink of going into diabetic ketoacidosis. So it was really, really just, you know, it's good that I went to the hospital that morning and got on insulin, I think but I think a lot of people when they're diagnosed after 40 or 35, I just talked to somebody the other day who was diagnosed at like 55. And I think the older you get, the less they even think it just automatically think you're a type two. Yeah, yeah,
Stacey Simms 3:58 it's something like half of all cases of Type one are occurring and people over the age of 20. But as you say, once you're over 20, many doctors don't know that it could be type one. I hear a lot of stories of Pupil misdiagnoses type two who have type one of a lot of people who have lotta, you know, latent autoimmune diabetes in adults. I don't hear a lot of these stories happening in the late 1990s. Or prior to that time period. Did you ever talk to your endocrinologist? Like, I don't want to say he was cutting edge because it was pretty obvious you were suffering, right at that point. But it is interesting that this was 33 years ago, and somebody finally got it right.
Dianne Mattisse 4:41 I think I was just so sick. By the time I actually went to see him and I had lost about 40 pounds. By that point. He looked at the amount of medication oral meds that I was on, and I think it had been about a period of three months and I kind of was keeping track of the blood sugars on a piano And a little notebook back then, that we had. And he looked at that and said, you know, you're you're decompensating, you're not doing well on any of these meds, the amount of weight I had lost. And I was young, younger. So I wasn't. I mean, I was losing muscle mass, but it wasn't as noticeable if I had been 60 or 70 years old. And he said, You're losing muscle mass. And you're just feeling so bad. I mean, I remember going on a trip with my husband. And we went to the Statue of Liberty at that point. It was you were able to go up the stairs and go into the statue. Yeah, well, we actually went with some family members. And this is before I actually was on insulin about a month before. And I remember going up three steps, and turning around and telling my husband, I can't do this. Oh, wow. And we had always, I had always been going to the gym be doing aerobics. Back then more of a runner than walking. Walking is more popular. Now. Of course, you know, less on the joints and everything. But I was a runner back then I was into aerobics. I was very athletic skier and, you know, snow ski or water skier. And he looked at me and said, What do you mean? And I said, I can't do it. I'm out of breath on step number three, I need to turn around. So that kind of pushed me to figure out. And now when I look back at those pictures of what I look like, I'm like, I actually looked very, very sick. I mean, that weight for me was not a normal weight ever in my life. Maybe when I was 10.
Stacey Simms 6:45 For a lot of weight, I
Dianne Mattisse 6:48 think I weighed 103. And I mean, I think I weighed more than that. Honestly, in fourth grade. Yeah.
Stacey Simms 6:53 Wow. Especially for somebody athletic. That's really tiny. Right? Right. Um,
Dianne Mattisse 6:59 you know what it is? It's it's denial. Oh, because nobody in my family. I mean, my family thought I look great. You're, you're on a diet, you're doing great, everything's good. But they didn't know how I was really feeling you know, health wise, I felt horrible. And weak and, and constantly thirsty, and constantly urinating and, you know, in the bathroom all the time and starving me, you actually are starving your body. And it's just the worst, it was a thirst. When I describe it to people, it was a thirst that no matter how much you drank, you could never make it go away. It was just something that was there all the time. So I mean, it was very, I was very lucky to find the right endocrinologist that, like you said, was a little bit of ahead of time, and kind of just said, You're a type one. You're not a type two, there's just no way and immediately hospitalized me and got me on track. So
Stacey Simms 8:00 I'm imagining that you did go home with a meter this time. Do you mind taking us through your technology journey because we're here to talk about you know what, you're one of the first people to use the ever since
Dianne Mattisse 8:12 I was first I was the first person implanted in the United States with the ever since and my doctor who is in Opelika, Alabama was the for about Columbus, Georgia. And he has an office in OPA Leica. He was the first person to be sort of the first physician to be certified. Wow, the technology. Let me tell you technology now. I always say this if you have to have a disease and a chronic disease. I'm so happy now that I have all of the help and see GMs I had actually left the hospital with a meter. And it was like, I think he had to wait two minutes for it to actually read. You know, your drop of blood. It had to be a much bigger drop of blood and all that. My doctor at the time would not there were pumps, but they were obviously much larger. And the CGM, the first CGM that I had was I had to go to the hospital and have it put on and I wore it it was a big box and I had to wear it for seven days. Then go back to the hospital. They would take the recording out they would review and and print everything, send it to my endocrinologist and then I had to go back to the endocrinologist for a report. So it only took a week of my life and of course, like anybody else I was sure that I was doing everything right and trying to have good read, you know a good recording done. So I would get a good report when I went there. Now I had changed my my original endocrinologist had a family tragedy with his son, so I had to change endocrinologist. And I thought I had a really good endocrinologist. But for some reason, she didn't really push me with the CGM. So I really pushed that. And I have been on all of them. I've been on all of the 10 to 14 day ones I've been on. Like I said, the original one that had to wear for seven days. And honestly, the last one, not the last few years before I went on, ever since I did not, they didn't get along with my body. I mean, I had too many alarms. I had too many failures. I had skinny rotations, I had just inaccuracies. And I finally said to myself, I'm not being compliant because of it. So I just started doing more meter checks. And I tried to manage my diabetes, which I could not I mean, to be honest, I was thinking I was compliant when I when I moved to Alabama and got with my physician now, my endocrinologist. I was not I was not being compliant, because I didn't have a CGM. So I mean, it's almost impossible to stick your finger every five minutes. I was gonna say do
Stacey Simms 11:19 you think the right word is compliant, though? I mean, you were trying, right? It's not like you were in your like, I hit that non compliant page. I
Dianne Mattisse 11:27 was right. You're right. I was trying. But now that I look back, I'm like, I should have. Well, there was nothing like ever since before I got it. So it was funny thing. My husband heard about it. I actually moved to Alabama a year earlier than my husband he was working down there want to do is finish his job for another year. And so I moved to Alabama, because we bought a house on the spur of the moment. We're on a visit up here. And so yeah, we weren't it wasn't a plan. It was not a plan. We just did it. So when I came up here, I did not have a physician here. I didn't even have a primary. But I did have a pump and I needed to get my supplies. So I I actually called there's only two endocrinologist in Auburn, Alabama. And that's about a half hour from where I live. So one of them wanted me to have a referral. But I didn't even have a primary yet. So I called the other one. Because I needed to get my insulin and my supplies. And they gave me an appointment. And it was funny. I went in on a Thursday to see Dr. Baliga. And he looked at me and said, This is my you know, I'm a new patient started talking to me about the ever since. Have you ever seen it? Have you ever heard about it? And I said, you know, it's funny. My husband saw something on the news about it a few months ago, and he mentioned it to me, but I hadn't seen anything else about it. So he started telling me about it that it was something that was placed under the skin. You wore it for at that time, it was 90 days now it's 180 days. And I said well, let's let's do it today, because he made it sound so wonderful that you wouldn't have to be doing, you know, I would know something every five minutes, I would know if you know and I was familiar with other products that gave you arrows, whether you're going up whether you're going down so you can kind of fix things as you're going along. I didn't have that right now. When I went to see him so I'm like, Ah, it sounds great. He goes well wait, we we haven't got he was at the FDA had certified it. He was certified, but they had to bring the team from Atlanta at the time. So he says but we can do a Tuesday. And I'm like, Okay, I can't wait. I mean, I was so excited. So I had it placed on Tuesday four days after I saw him and I'm now on number 24th sensor and it has been actually so life changing for me i One of the main reasons I was so anxious and happy to hear about something like that is because I was having severe low blood sugars at night and nothing not to wake me up. I mean I My husband actually would call me every morning at 839 o'clock to make sure I had made it through the night that I was still alive. So it was a horrible really way to live and I was having multiple sometimes multiple low blood sugars during the day and or blood glucose during the day. And then I would treat them and then I would go up and down you know so it was it was just up and down cycle and you don't feel well with that at I don't anyway most people don't because you you know you now you have to fix this and you know hope that it fixes that. So once the I got on ever since that disappeared, basically disappeared from my life, I maybe have one, low blood sugar, maybe once every two months now, I have a very, very low percentage less than 1%, every 90 days. So it's amazing to me how technology has changed my life and made me feel like I can actually live kind of like a normal life. I need it. And I also was never really addicted to looking at my phone all the time, like a lot of younger people do. And you know, I don't do a lot of selfies and but now, I mean, I do sit at the table and have my phone there because I want to see what's going on. And if I'm out to dinner, I put it there. And I want to see if it's going down, is it going up? And it gives me that you know that that safety net of, I'm not going to go high, and I'm not going to go low. Do you mind if I ask
Stacey Simms 15:57 what other technology you're using because the CGM alone isn't going to prevent lows.
Dianne Mattisse 16:02 I have an insulin pump. I don't have the loops. I don't use that because I have the CGM that I 100% believe in and, and love it. I do have a meter. And I do have to calibrate the Eversense once a day, which to me, gives me that feeling of security and safety that I am getting good numbers throughout the day. And if something's really off, you know if it feels like it's off, I will check with my meter. But I use the meter a lot less to be honest, I you know, I really trust you ever since. And I mean, it's been it's proven to me because many times the meter and the ever since will have exactly the same number, or within a few a few numbers. And that makes me feel so much better. Right.
Stacey Simms 16:53 But you use you use a pump. That's just I wouldn't call it a dumb pump. But you don't use an automated system. I
Dianne Mattisse 16:59 don't use the loop. I don't use the automated system. It has the capability. Okay, but but I don't I just that's not an important factor for me, right?
Stacey Simms 17:10 I mean, I'm just trying to be clear for folks that you know, we're listening, you know what you're using in right with, I mean, my son, it's funny to look at technology because he was diagnosed in 2006. So we went, you know, shots and meter, and then DME pump and meter for forever. And then CGM pump your meter to calibrate like you say, and now in 2020, he went closed loop. So he's got a pump that communicates with the CGM. So it's just wild to see how it all works. All right, all the questions people have about ever since tell us about the insertion and the removal, because a lot of that makes a lot of people uncomfortable to think about.
Dianne Mattisse 17:49 Right, right. I think the placement of the ever sense has, I think a lot of people think about it as a surgery and as this and that, it really is such a tiny little, maybe just a tiny little incision, not even as big as your pinky fingernail. And they actually, you know, they numb you, of course, and then they put the little the little sensor right under the skin. I mean, you can actually kind of feel it through the skin, you know, which is helpful when you're placing the transmitter. And it doesn't. I mean, honestly, it doesn't hurt at all, I'd rather have that done and then have my teeth cleaned, to be honest. I mean, it's it's really that simple. And I've had, like I said, I'm on number 24. And it's really nothing the removal is the same thing. It takes maybe the insertion the longest part of the insertion or the placement is getting the Lidocaine to numb the area, you know, they actually do it in a very sterile way comes with a big sterile cape. And you know, you're laying on the table and they clean the area very well. I've never had an infection I've never had any what I would call any bleeding I mean it might bleed a little tiny bit, but they cover it with steri strips, there's no stitching, there's no you know, there's nothing like you have to go back and have surgery looked at it or anything like that there's no stitches or anything like that. So the removal my physician has always used an ultrasound for removal. So I think that has become very popular because I belong some a lot of these pages that people talk about it and I can actually feel mine because it really is right under the skin and but I think the ultrasound kind of helps them know exactly where the end is. Because listen, there's you're putting it under the skin, it could move a little bit it could you know turn or whatever, right so I've never really had any issues. I mean, you hear horror stories from people who have never even had it, which really is quite annoying, because I think it's just like slamming a restaurant, if you've never eaten there, you know, just and I think the greatest thing is that we have a choice. Now, it might not be for everyone. But it is something that for people who get these severe irritations or allergies to certain products, you know, with some of the 10, the 14, ones, 14, day 10 to 14 day CGMS. And also, I think a lot of people worry about getting it knocked off. And the cost of it, were this the transmitter, which where you were on the outside, if it comes off, you know, you just stick a new adhesive on it and stick it back on. The other great thing is, you know, we live by a lake and we have a boat. And if I want to go swimming, I take my transmitter off, I get into the water. And I don't have to worry about anything, I don't have like a permanent thing going into my body a permanent or fish going in, you know, which always kind of bothered me going into a pool or going into a lake or something like that. This is once that heals up after a couple of days, there's nothing really on the outside plus it you know, the great thing about ever since also is it uses a different kind of technology. It's not the same technology as other CGMS use. So I believe and this is personally my opinion, I believe that it's much more accurate because of the type of technology that they're using. It's very advanced,
Stacey Simms 21:47 you being the way the sensor reads. Yes, the way the sensor reads. And you said you had a lot of irritation from the other CGM. You don't have any irritation with the adhesive that the transmitter sticks
Dianne Mattisse 21:59 on at all. None at all. None at all. The little adhesive ups the little adhesive that we put on the back of the transmitter is very very skin friendly. Very skin friendly i and I'm fair and I have blue fair skin blue wise, so I have had pretty severe irritations with other CGM said I had to move them around and try different things and try different products under it. Also products to keep them on, which haven't had to do that either. You know, this kind of stays on? And I don't really think about it. I mean, I think more about checking my phone now than I do thinking about having the sensor. So tell me again,
Stacey Simms 22:47 this is your 24th Yes, sir. How long will this one stay in?
Dianne Mattisse 22:54 Six months, not? Well, it stays now up to 180 days or up to six months. beginning it was up to three months. And I do know that the FDA is working on the approval for the what 365 Day, which we're all looking forward to that. What I mean, I love going to my doctor so I'm like, you know, I we always kid around. So you know, we have to stop meeting like this. But yes, I mean, it's a it's going to be quite awesome for a lot of people to get it for one year because I do go to my doctor every three months to get prescriptions for the other supplies I need and insulin and things like that. But some people only go to see their endocrinologist or their primary doctor only once a year to manage your diabetes.
Stacey Simms 23:49 In the six months, I'm just trying to you know, I'm trying to picture that you think that all the different the CGM changes that would happen within six months. Have you had any issues any reason to go back to your endo and say take a look at this get out the ultrasound machine or is it smooth sailing for you?
Dianne Mattisse 24:05 I haven't had any issues for several years. I mean, we're going on six years this July that I've had it the greatest thing is which I've never used the most recent products I'm not sure but but the ever since has an online or on your phone whole picture of what's going on. So I'll tell you how long you're you know how much time you're in. It will tell you exactly the percentage time and range and it also will tell you seven days, 14 days, 30 days, 60 days, 90 days so you can actually see and it will also tell you what your estimated A1C will be it will tell you what percentage is low you're in the low area what percentage you're in high so it gives you all kinds of information. The greatest thing is my doctor has that information also. So if I make a call to him, and I say, you know, I'm not doing well, something's not right, I can't get the sugars down and, and it's not the pump I, you know, I've moved it, I've changed insulin, all that thing, all those things, then he will go on there and say this is what you need to do. But this is what we need to change around, you know, because it's all based on the insulin that you're getting and the activity. It's nothing really I don't feel to do with the CGM. Right? So with the sensor, so I haven't ever had to call him and say, I think it's a sensor. I think most of the time, it's just been the amount of insulin. Or maybe I'm sick. You know, maybe if I have an illness that's not, you know, I had or I made a couple months ago, I had take a steroid shot my wrist. And that just blew me out of the water. So I called him and he was like, Okay, this is what we need to do for two days, you know, so the CGM? No, I mean, I find no fault with that. I mean, I think if the built in protection there is if your meter reading when you put in your calibration in the morning, which I do mine in the morning, you can kind of set it up to do whenever, but I always want to do it first thing in the morning, because I want to know where I'm starting anyway, my day, is it going to be good, bad or ugly that day? So I put my calibration number in there. And if it's, let's say it's off, it's off by 30 or 40 points, you know, you, the sensor itself will tell you something's not right. And it will actually ask you to do another calibration in another hour or so. So, to me, it's, it's kind of a safety check. So that I don't worry about it going off, and being kind of crazy on its own. Because, you know, if something like that happens, and I'm sure with technology, everything has, you know, kinks in it. They you would call the customer service, they have great customer service. And they can actually do a lot with Reese not resetting it actually totally, but figuring out if it really is the sensor really is you. I've had to do a reset on the sensor maybe?
Stacey Simms 27:20 Sure. Um, I'm curious, you had mentioned you're in some groups, and I'm sure you know, people who also were there ever since and a lot of people who are interested in it. What's the first question people ask you about it? Like diabetes people?
Dianne Mattisse 27:35 How about how is the insertion? How is the placement? Does it hurt? Does it scar does it? How is the surgery? You know, they all like to think it's surgery and everything? Because listen, when you're thinking about that you're thinking about, I don't know, maybe they're thinking of a transplant or something. But it's a very simple thing. And there's a lot of other medical procedures now that use these placements under the skin. There's hormonal ones. I know there's a testosterone one, I think there's an there's one for birth control now. So it's it's, you know, very upfront technology that's being used a lot in medical treatment. So it's not anything, you know, that people should be afraid of. I mean, this is an advanced, very advanced product, I think, and simple life is so much simpler with this, you know, just, I mean, once every six months now you go in, I mean, you're it's 15 minutes, and you know, I mean, the 10 minutes, I'm waiting for the Lidocaine to work. That's, that's the biggest thing.
Stacey Simms 28:44 Do you have scoring? Do you have a scar on other very
Dianne Mattisse 28:46 fair, like I said before, and I don't scar and usually the FDA requires that they switch arm to arm every six months. So like, they'll do the left arm and then they do the right arm. So in that meantime, I can't even like when I go back to have the removal. If if the sensor has already expired, like but I usually try to go a couple days before. If it's expired, of course, it's not going to have a reading. And then, you know, I have to really figure out where it is because I don't see the scar anymore. There is actually I think it's so tiny that it heals up. I mean, you're supposed to leave the bandaging and everything on instructions or five days. Usually, it's healed up in about two or three days completely healed. You can't even really see anything. So I mean, some people would scar I would imagine, but I mean, I think you have that's the trade off or having a totally accurate CGM. That's easier. That's less expensive than things that are failing and you have to replace all the time I mean, for me, it's, it was never I never thought twice about that. I may be by my age, I have a lot of scars anyway, from falling, and it's like, you know, I'm not worried about having perfect skin anymore. So, but no, actually, because I'm fair. I, I did think about that, but but only for about two seconds.
Stacey Simms 30:25 Well, you know, and if you don't mind, um, you know, I'd love to talk about aging with type one. I mean, you know, it's different. Life is different from 20 to 50. Certainly, you've mentioned like, you don't run so much anymore, you know, so I don't want to make a whole Pash of like we all know we're getting older. For lucky, we know we're getting older as like, but you know, years and years ago, people weren't living past 50 type 1 diabetes, let alone 70. And I have listeners in their 80s. And we know people in their 90s with type one. So it's a pretty wild. So I
Dianne Mattisse 30:58 73. It's changed 73. My A1C is 6.6. I'm so proud of that. Because when I first got the Eversense inserted, it was in the mid nines or a little bit higher. It wasn't 10, but it was in the night. So I've made tremendous strides in getting it down being healthier. And I'm just very proud of that. Because you know, I would like to be in the fives but I, you know, I'm fine. My physician is fine with it being in the sixes, getting rid of the low blood sugars was a huge thing for me because many, many people die in the middle of the night from having a low blood sugar. And that still happens to people and really with CGM and all these choices, it shouldn't happen. And the fact that the CGM gives me this vibration, I know all anywhere, anytime, if I'm out eating, if I'm in bed sleeping, I know I'm going to get a vibration that's going to tell me what's going on. So that has really helped me be happier in my life. I think I worked 25 years in health care as administrator and then 25 years is real estate. Now I'm retired but I do a lot. I have a charity I'm treasurer for up here in Alabama, that does art. We provide art classes and projects for kids in the schools here, elementary schools and some high schools. I have a little word working business with my sister here, we make maps of the lake and we sell to all the little stores around here and everything. And I keep very busy, I also do a transaction. I'm a transaction broker for my son who's a broker in Florida. So I do a lot of paperwork online for him. So I keep very busy. But the fact that I'm getting older, you know, and I know people will say this, you talk to anybody old, your mind is still young, you still look you know, when you look in the mirror, you go Who is that old lady, but when you when you when you feel good, and I feel so much better with a normal blood sugar. I don't feel like I'm that age, you know, I mean, I I enjoy traveling, I traveled to Florida quite a bit because of a lot of relatives and friends still down there having been there for a long living there my entire life basically. And I feel comfortable traveling by myself, which is a huge thing. Because I can tell you 10 years ago, I did not I mean, I always wanted to have my husband or my son or somebody with me. So that getting old and having diabetes. And I've been very lucky because I don't have any side effects. I don't have any complications from having diabetes for so long. I mean, on one hand, I was very lucky, I didn't have to go through puberty or childbearing. So I got it when all that was done, had my children and everything. But on the other hand, you know, 33 years when I think back 33 years is a long time to be dealing with a chronic disease 24/7 And I don't think anybody really understands that it is a full time job. It is something that is with you 24/7 You cannot forget about it even for a day. I mean, it's dangerous if you think you can, but you just can't. But getting older. I just like to I'm so excited to see all the things that have have come from diabetic technology, all the opportunities that we have now. I love being part of the ever since group of people because honestly I never knew anybody growing up, you know, during when I was diagnosed at 40 I never knew another type one. I felt very isolated and kind of depressed about it because I'm like, even in my family, they didn't really acknowledge it because Nobody had the knowledge about it, they knew a lot about type twos and you should lose weight, eat better and exercise, but they didn't really know much about why I was a type one or how I was managing it or how encompassing it was to your life. So I think just having better communities, among us is has helped tremendously for me. And the ever since has just been, like I said, before, life changing for me, no matter what age I would have gotten it, I think it's just the best product because it's the easiest product to use. And I've used them all, I mean, you can't name one that I haven't used and, and I've gone through the progression from when they had to put it on the hospital until the very newest ones. And nothing really, my body didn't like them for whatever reason. But getting old is great. I just look at it and go, I have friends from first grade still, that I see when I go down. And I'm like, you know, and they, you know, most of my close friends know when everything and they, they are very supportive, but they don't really understand it. So now that I understand it better. I'm okay with that. I mean, I think age has just made me feel like, Hey, I am so lucky to be here and feel as good as I do can be as active as I want to be. No, I don't run anymore, and I don't ski anymore. I last skied when I was 65 And I'm like, hey, that's it. I'm done. I'm not doing that anymore. I you know, I got away without ever having a broken bone or anything. Or last time we went, you know, I went with a bunch of younger girls and, and family, bunch of family. And and I'm like, Hey, I'm skiing is good as he's 40 year olds, but I'm not risking it anymore. Yeah.
Stacey Simms 36:45 So I meant to ask Do you know is ever since covered by Medicare? I can look that. Yes, I
Dianne Mattisse 36:49 did. Absolutely. Now the first couple years, it was not. And my husband I made that decision to pay out of pocket. But yes, it is covered now. That's great. Yes, right. covered. And it covers the insertion and the removal for the physician also, which I think some of the other insurances don't but but yeah, that was not the deciding factor for me. I mean, we paid out of pocket, and and we just knew it was going to be the best thing for me.
Stacey Simms 37:18 Good to know, though. I mean, it's really interesting, again, with a lot of my older listeners, you know, and as we are so excited that people with type one are living to Medicare year and beyond, right, it's really important to look at these things. It is it's a deciding factor for a lot of people. Yes. Okay, before I let you go, Diane, how did you get hooked up as an ambassador? I mean, it makes sense. You're the very first patient in America. So I guess it's kind of a dumb question that everybody wants to speak out, you know, right?
Dianne Mattisse 37:42 Well, I never Well, okay. So like I said, I never really was in a group of people, I didn't really even have anybody. You know, nobody in my family, nobody to talk to. So the team came from Atlanta, when I had my first insertion, placement, they'd like you to lose placement. So when I had my first placement, the team from Atlanta came, and that was six years ago, this July. So the person who is head of the sales now I believe, she was on that team, and she came in, and we kind of hit it off. And then I think it went on for about, I think six months later, they decided to get a group together, and call them the patient ambassadors. And that's when that is before a Sensia actually got began, began to be involved in the marketing. So that was when Sen. psionics was doing it. So this person picked eight or nine people. And we still have, I believe, four or five of the original ambassadors, and now it's more demographically varied. You know, we have young, I obviously, I'm the older person, you know, but it is good, because I think it's, you know, it shows that it's for everyone. I mean, there's not an age barrier. And there's not a weight barrier. There's not any kind of barrier, except you have to be a type one and you have to want this device. And it's just but that's how are we got hooked up and we kind of it kind of slacked off a little bit when we became the marketing went over to a Sensia. And they had that agreement with a Sensia. And then they picked four or five of the original people and and you know, we're still very close, we have our own little group chats and things like that. So and it's good because now I know if I have a question or if they have a question we can get with each other. It's it that is the greatest thing. I think younger people or anybody now, Facebook has pages, you know, people like you who are spreading the word. I mean, if there had been This, I think I would have felt so much better. I mean it I'm almost getting teary here. But I think I would have felt so much more inclusive, then than I felt for many, many, many years. So I think that you're doing a wonderful thing by spreading the word and helping people and sharing. And I think you know, somebody like your son, who's 19 is going to have a whole different experience with this than I did. And, you know, because you just by 40, you've gone through all those teenage angst and everything but and I was done having children everything, but then it's like, what the heck now? i What is this, you know, coming on, and I was healthy at that time. And I'm like, What did I ever do? Never did drugs, never smoked. Never, you know, there wasn't all the information about immune system, autoimmune and it runs in my family. We have so much autoimmune disease, but not type one. Yeah. So but the patient ambassador, it's a greatest group, we have a blast when we get together. That's awesome. Well,
Stacey Simms 41:10 doing the show is truly a privilege for me, you know, getting to talk to people like you and learning so much. I really appreciate it. Diane, thank you so much for joining me. I hope we connect again soon. So
Dianne Mattisse 41:21 and I hope you are very good at that editing.
670 episodes
Manage episode 415430190 series 182538
This week, managing type 1 diabetes into your 70s is a bit of uncharted waters.. While thankfully more and more people are living long with T1D, that wasn’t always the case. I’m taking to Dianne Mattiace who is in her early 70s and was diagnosed as an adult, 30 years ago. She was the first person in the US to use the Eversense CGM when it was approved in 2018 and she’s still using it today. She answers your questions about this implantable CGM, why she’s stayed with it and what else she does to manage in retirement and beyond.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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Episode Transcription:
Stacey Simms 0:00 Diane Matisse. Thanks so much for joining me. Welcome to Diabetes Connections. It's great to talk to you.
Dianne Mattisse 0:04 Thank you so much for having me. Yeah, let's
Stacey Simms 0:07 jump right in. Let's start with your diagnosis story, because you were initially misdiagnosed, right? Take me through what happened? Yes,
Dianne Mattisse 0:15 I was 40 years old. And my family history was type two diabetes. And they actually, as soon as you say that to a physician, and it was a general practitioner, it was not an endocrinologist, they automatically just put that label on me and said, you know, you're another type two in your family. It went on for about three months. And I actually was in the honeymoon phase, which now was not even recognized back then. But I, it was at the time where you're making enough insulin to keep you from going into DKA into ketoacidosis end up in a hospital, but not enough to make you feel well, so my blood sugar's were still rising, the medication they had me on wasn't working. And finally, after, I think about three or four months, well, during that time, I saw an endocrinologist. And he also was doing a lot of testing, even the C peptide, which is now a diagnosis tool wasn't able to be done where I lived, they had to send it out to a lab in Atlanta. So once that was kind of established, he admitted me, and started me on insulin and, you know, multiple injections per day,
Stacey Simms 1:35 why did you What led you to actually seek out an endocrinologist?
Dianne Mattisse 1:39 I was not feeling great with the general doctor treating me and I just kept getting worse and worse. And I was taking oral medications, they weren't all these designer meds that they have now for type twos. Back then it was couple pills. So I was I would call them increase the pills. And as I was increasing the pills over the three or four months, so was my blood sugar increasing, and I kept losing weight. And I'm thinking, well, this is a great diet I'm on I was eating better. But my blood sugar's were going into the three hundreds. So finally, I had been in the medical field before that, actually, it was in the medical field at the time, I was a controller for a nursing home company, but it didn't really have access to a lab or anything like that. I was actually the Regional Controller. And I was on the financial side, right? So I actually went to a lab got my blood sugar taken. I didn't even think to buy a meat or anything like that, which I should have, but I did not. And I kept seeing my blood sugar's go up and up and up. And so I finally just on my own said, I'm gonna go to an endocrinologist. And as soon as I went, he told me, I think you're a type two. And type one, I think you are type one, misdiagnosed as a type two. And let's do some testing. He started he did the C peptide, sent it out, did a bunch of other tests. I have no no recollection. Now, it's been 33 years of what else he did. But over that weekend, so that was like a Friday over that weekend, I just be compensated more I started getting muscle cramps, I called him and he said, go to the hospital Monday morning, seven o'clock and bring a bag you're being admitted. So I did. And he said, I was really on the brink of going into diabetic ketoacidosis. So it was really, really just, you know, it's good that I went to the hospital that morning and got on insulin, I think but I think a lot of people when they're diagnosed after 40 or 35, I just talked to somebody the other day who was diagnosed at like 55. And I think the older you get, the less they even think it just automatically think you're a type two. Yeah, yeah,
Stacey Simms 3:58 it's something like half of all cases of Type one are occurring and people over the age of 20. But as you say, once you're over 20, many doctors don't know that it could be type one. I hear a lot of stories of Pupil misdiagnoses type two who have type one of a lot of people who have lotta, you know, latent autoimmune diabetes in adults. I don't hear a lot of these stories happening in the late 1990s. Or prior to that time period. Did you ever talk to your endocrinologist? Like, I don't want to say he was cutting edge because it was pretty obvious you were suffering, right at that point. But it is interesting that this was 33 years ago, and somebody finally got it right.
Dianne Mattisse 4:41 I think I was just so sick. By the time I actually went to see him and I had lost about 40 pounds. By that point. He looked at the amount of medication oral meds that I was on, and I think it had been about a period of three months and I kind of was keeping track of the blood sugars on a piano And a little notebook back then, that we had. And he looked at that and said, you know, you're you're decompensating, you're not doing well on any of these meds, the amount of weight I had lost. And I was young, younger. So I wasn't. I mean, I was losing muscle mass, but it wasn't as noticeable if I had been 60 or 70 years old. And he said, You're losing muscle mass. And you're just feeling so bad. I mean, I remember going on a trip with my husband. And we went to the Statue of Liberty at that point. It was you were able to go up the stairs and go into the statue. Yeah, well, we actually went with some family members. And this is before I actually was on insulin about a month before. And I remember going up three steps, and turning around and telling my husband, I can't do this. Oh, wow. And we had always, I had always been going to the gym be doing aerobics. Back then more of a runner than walking. Walking is more popular. Now. Of course, you know, less on the joints and everything. But I was a runner back then I was into aerobics. I was very athletic skier and, you know, snow ski or water skier. And he looked at me and said, What do you mean? And I said, I can't do it. I'm out of breath on step number three, I need to turn around. So that kind of pushed me to figure out. And now when I look back at those pictures of what I look like, I'm like, I actually looked very, very sick. I mean, that weight for me was not a normal weight ever in my life. Maybe when I was 10.
Stacey Simms 6:45 For a lot of weight, I
Dianne Mattisse 6:48 think I weighed 103. And I mean, I think I weighed more than that. Honestly, in fourth grade. Yeah.
Stacey Simms 6:53 Wow. Especially for somebody athletic. That's really tiny. Right? Right. Um,
Dianne Mattisse 6:59 you know what it is? It's it's denial. Oh, because nobody in my family. I mean, my family thought I look great. You're, you're on a diet, you're doing great, everything's good. But they didn't know how I was really feeling you know, health wise, I felt horrible. And weak and, and constantly thirsty, and constantly urinating and, you know, in the bathroom all the time and starving me, you actually are starving your body. And it's just the worst, it was a thirst. When I describe it to people, it was a thirst that no matter how much you drank, you could never make it go away. It was just something that was there all the time. So I mean, it was very, I was very lucky to find the right endocrinologist that, like you said, was a little bit of ahead of time, and kind of just said, You're a type one. You're not a type two, there's just no way and immediately hospitalized me and got me on track. So
Stacey Simms 8:00 I'm imagining that you did go home with a meter this time. Do you mind taking us through your technology journey because we're here to talk about you know what, you're one of the first people to use the ever since
Dianne Mattisse 8:12 I was first I was the first person implanted in the United States with the ever since and my doctor who is in Opelika, Alabama was the for about Columbus, Georgia. And he has an office in OPA Leica. He was the first person to be sort of the first physician to be certified. Wow, the technology. Let me tell you technology now. I always say this if you have to have a disease and a chronic disease. I'm so happy now that I have all of the help and see GMs I had actually left the hospital with a meter. And it was like, I think he had to wait two minutes for it to actually read. You know, your drop of blood. It had to be a much bigger drop of blood and all that. My doctor at the time would not there were pumps, but they were obviously much larger. And the CGM, the first CGM that I had was I had to go to the hospital and have it put on and I wore it it was a big box and I had to wear it for seven days. Then go back to the hospital. They would take the recording out they would review and and print everything, send it to my endocrinologist and then I had to go back to the endocrinologist for a report. So it only took a week of my life and of course, like anybody else I was sure that I was doing everything right and trying to have good read, you know a good recording done. So I would get a good report when I went there. Now I had changed my my original endocrinologist had a family tragedy with his son, so I had to change endocrinologist. And I thought I had a really good endocrinologist. But for some reason, she didn't really push me with the CGM. So I really pushed that. And I have been on all of them. I've been on all of the 10 to 14 day ones I've been on. Like I said, the original one that had to wear for seven days. And honestly, the last one, not the last few years before I went on, ever since I did not, they didn't get along with my body. I mean, I had too many alarms. I had too many failures. I had skinny rotations, I had just inaccuracies. And I finally said to myself, I'm not being compliant because of it. So I just started doing more meter checks. And I tried to manage my diabetes, which I could not I mean, to be honest, I was thinking I was compliant when I when I moved to Alabama and got with my physician now, my endocrinologist. I was not I was not being compliant, because I didn't have a CGM. So I mean, it's almost impossible to stick your finger every five minutes. I was gonna say do
Stacey Simms 11:19 you think the right word is compliant, though? I mean, you were trying, right? It's not like you were in your like, I hit that non compliant page. I
Dianne Mattisse 11:27 was right. You're right. I was trying. But now that I look back, I'm like, I should have. Well, there was nothing like ever since before I got it. So it was funny thing. My husband heard about it. I actually moved to Alabama a year earlier than my husband he was working down there want to do is finish his job for another year. And so I moved to Alabama, because we bought a house on the spur of the moment. We're on a visit up here. And so yeah, we weren't it wasn't a plan. It was not a plan. We just did it. So when I came up here, I did not have a physician here. I didn't even have a primary. But I did have a pump and I needed to get my supplies. So I I actually called there's only two endocrinologist in Auburn, Alabama. And that's about a half hour from where I live. So one of them wanted me to have a referral. But I didn't even have a primary yet. So I called the other one. Because I needed to get my insulin and my supplies. And they gave me an appointment. And it was funny. I went in on a Thursday to see Dr. Baliga. And he looked at me and said, This is my you know, I'm a new patient started talking to me about the ever since. Have you ever seen it? Have you ever heard about it? And I said, you know, it's funny. My husband saw something on the news about it a few months ago, and he mentioned it to me, but I hadn't seen anything else about it. So he started telling me about it that it was something that was placed under the skin. You wore it for at that time, it was 90 days now it's 180 days. And I said well, let's let's do it today, because he made it sound so wonderful that you wouldn't have to be doing, you know, I would know something every five minutes, I would know if you know and I was familiar with other products that gave you arrows, whether you're going up whether you're going down so you can kind of fix things as you're going along. I didn't have that right now. When I went to see him so I'm like, Ah, it sounds great. He goes well wait, we we haven't got he was at the FDA had certified it. He was certified, but they had to bring the team from Atlanta at the time. So he says but we can do a Tuesday. And I'm like, Okay, I can't wait. I mean, I was so excited. So I had it placed on Tuesday four days after I saw him and I'm now on number 24th sensor and it has been actually so life changing for me i One of the main reasons I was so anxious and happy to hear about something like that is because I was having severe low blood sugars at night and nothing not to wake me up. I mean I My husband actually would call me every morning at 839 o'clock to make sure I had made it through the night that I was still alive. So it was a horrible really way to live and I was having multiple sometimes multiple low blood sugars during the day and or blood glucose during the day. And then I would treat them and then I would go up and down you know so it was it was just up and down cycle and you don't feel well with that at I don't anyway most people don't because you you know you now you have to fix this and you know hope that it fixes that. So once the I got on ever since that disappeared, basically disappeared from my life, I maybe have one, low blood sugar, maybe once every two months now, I have a very, very low percentage less than 1%, every 90 days. So it's amazing to me how technology has changed my life and made me feel like I can actually live kind of like a normal life. I need it. And I also was never really addicted to looking at my phone all the time, like a lot of younger people do. And you know, I don't do a lot of selfies and but now, I mean, I do sit at the table and have my phone there because I want to see what's going on. And if I'm out to dinner, I put it there. And I want to see if it's going down, is it going up? And it gives me that you know that that safety net of, I'm not going to go high, and I'm not going to go low. Do you mind if I ask
Stacey Simms 15:57 what other technology you're using because the CGM alone isn't going to prevent lows.
Dianne Mattisse 16:02 I have an insulin pump. I don't have the loops. I don't use that because I have the CGM that I 100% believe in and, and love it. I do have a meter. And I do have to calibrate the Eversense once a day, which to me, gives me that feeling of security and safety that I am getting good numbers throughout the day. And if something's really off, you know if it feels like it's off, I will check with my meter. But I use the meter a lot less to be honest, I you know, I really trust you ever since. And I mean, it's been it's proven to me because many times the meter and the ever since will have exactly the same number, or within a few a few numbers. And that makes me feel so much better. Right.
Stacey Simms 16:53 But you use you use a pump. That's just I wouldn't call it a dumb pump. But you don't use an automated system. I
Dianne Mattisse 16:59 don't use the loop. I don't use the automated system. It has the capability. Okay, but but I don't I just that's not an important factor for me, right?
Stacey Simms 17:10 I mean, I'm just trying to be clear for folks that you know, we're listening, you know what you're using in right with, I mean, my son, it's funny to look at technology because he was diagnosed in 2006. So we went, you know, shots and meter, and then DME pump and meter for forever. And then CGM pump your meter to calibrate like you say, and now in 2020, he went closed loop. So he's got a pump that communicates with the CGM. So it's just wild to see how it all works. All right, all the questions people have about ever since tell us about the insertion and the removal, because a lot of that makes a lot of people uncomfortable to think about.
Dianne Mattisse 17:49 Right, right. I think the placement of the ever sense has, I think a lot of people think about it as a surgery and as this and that, it really is such a tiny little, maybe just a tiny little incision, not even as big as your pinky fingernail. And they actually, you know, they numb you, of course, and then they put the little the little sensor right under the skin. I mean, you can actually kind of feel it through the skin, you know, which is helpful when you're placing the transmitter. And it doesn't. I mean, honestly, it doesn't hurt at all, I'd rather have that done and then have my teeth cleaned, to be honest. I mean, it's it's really that simple. And I've had, like I said, I'm on number 24. And it's really nothing the removal is the same thing. It takes maybe the insertion the longest part of the insertion or the placement is getting the Lidocaine to numb the area, you know, they actually do it in a very sterile way comes with a big sterile cape. And you know, you're laying on the table and they clean the area very well. I've never had an infection I've never had any what I would call any bleeding I mean it might bleed a little tiny bit, but they cover it with steri strips, there's no stitching, there's no you know, there's nothing like you have to go back and have surgery looked at it or anything like that there's no stitches or anything like that. So the removal my physician has always used an ultrasound for removal. So I think that has become very popular because I belong some a lot of these pages that people talk about it and I can actually feel mine because it really is right under the skin and but I think the ultrasound kind of helps them know exactly where the end is. Because listen, there's you're putting it under the skin, it could move a little bit it could you know turn or whatever, right so I've never really had any issues. I mean, you hear horror stories from people who have never even had it, which really is quite annoying, because I think it's just like slamming a restaurant, if you've never eaten there, you know, just and I think the greatest thing is that we have a choice. Now, it might not be for everyone. But it is something that for people who get these severe irritations or allergies to certain products, you know, with some of the 10, the 14, ones, 14, day 10 to 14 day CGMS. And also, I think a lot of people worry about getting it knocked off. And the cost of it, were this the transmitter, which where you were on the outside, if it comes off, you know, you just stick a new adhesive on it and stick it back on. The other great thing is, you know, we live by a lake and we have a boat. And if I want to go swimming, I take my transmitter off, I get into the water. And I don't have to worry about anything, I don't have like a permanent thing going into my body a permanent or fish going in, you know, which always kind of bothered me going into a pool or going into a lake or something like that. This is once that heals up after a couple of days, there's nothing really on the outside plus it you know, the great thing about ever since also is it uses a different kind of technology. It's not the same technology as other CGMS use. So I believe and this is personally my opinion, I believe that it's much more accurate because of the type of technology that they're using. It's very advanced,
Stacey Simms 21:47 you being the way the sensor reads. Yes, the way the sensor reads. And you said you had a lot of irritation from the other CGM. You don't have any irritation with the adhesive that the transmitter sticks
Dianne Mattisse 21:59 on at all. None at all. None at all. The little adhesive ups the little adhesive that we put on the back of the transmitter is very very skin friendly. Very skin friendly i and I'm fair and I have blue fair skin blue wise, so I have had pretty severe irritations with other CGM said I had to move them around and try different things and try different products under it. Also products to keep them on, which haven't had to do that either. You know, this kind of stays on? And I don't really think about it. I mean, I think more about checking my phone now than I do thinking about having the sensor. So tell me again,
Stacey Simms 22:47 this is your 24th Yes, sir. How long will this one stay in?
Dianne Mattisse 22:54 Six months, not? Well, it stays now up to 180 days or up to six months. beginning it was up to three months. And I do know that the FDA is working on the approval for the what 365 Day, which we're all looking forward to that. What I mean, I love going to my doctor so I'm like, you know, I we always kid around. So you know, we have to stop meeting like this. But yes, I mean, it's a it's going to be quite awesome for a lot of people to get it for one year because I do go to my doctor every three months to get prescriptions for the other supplies I need and insulin and things like that. But some people only go to see their endocrinologist or their primary doctor only once a year to manage your diabetes.
Stacey Simms 23:49 In the six months, I'm just trying to you know, I'm trying to picture that you think that all the different the CGM changes that would happen within six months. Have you had any issues any reason to go back to your endo and say take a look at this get out the ultrasound machine or is it smooth sailing for you?
Dianne Mattisse 24:05 I haven't had any issues for several years. I mean, we're going on six years this July that I've had it the greatest thing is which I've never used the most recent products I'm not sure but but the ever since has an online or on your phone whole picture of what's going on. So I'll tell you how long you're you know how much time you're in. It will tell you exactly the percentage time and range and it also will tell you seven days, 14 days, 30 days, 60 days, 90 days so you can actually see and it will also tell you what your estimated A1C will be it will tell you what percentage is low you're in the low area what percentage you're in high so it gives you all kinds of information. The greatest thing is my doctor has that information also. So if I make a call to him, and I say, you know, I'm not doing well, something's not right, I can't get the sugars down and, and it's not the pump I, you know, I've moved it, I've changed insulin, all that thing, all those things, then he will go on there and say this is what you need to do. But this is what we need to change around, you know, because it's all based on the insulin that you're getting and the activity. It's nothing really I don't feel to do with the CGM. Right? So with the sensor, so I haven't ever had to call him and say, I think it's a sensor. I think most of the time, it's just been the amount of insulin. Or maybe I'm sick. You know, maybe if I have an illness that's not, you know, I had or I made a couple months ago, I had take a steroid shot my wrist. And that just blew me out of the water. So I called him and he was like, Okay, this is what we need to do for two days, you know, so the CGM? No, I mean, I find no fault with that. I mean, I think if the built in protection there is if your meter reading when you put in your calibration in the morning, which I do mine in the morning, you can kind of set it up to do whenever, but I always want to do it first thing in the morning, because I want to know where I'm starting anyway, my day, is it going to be good, bad or ugly that day? So I put my calibration number in there. And if it's, let's say it's off, it's off by 30 or 40 points, you know, you, the sensor itself will tell you something's not right. And it will actually ask you to do another calibration in another hour or so. So, to me, it's, it's kind of a safety check. So that I don't worry about it going off, and being kind of crazy on its own. Because, you know, if something like that happens, and I'm sure with technology, everything has, you know, kinks in it. They you would call the customer service, they have great customer service. And they can actually do a lot with Reese not resetting it actually totally, but figuring out if it really is the sensor really is you. I've had to do a reset on the sensor maybe?
Stacey Simms 27:20 Sure. Um, I'm curious, you had mentioned you're in some groups, and I'm sure you know, people who also were there ever since and a lot of people who are interested in it. What's the first question people ask you about it? Like diabetes people?
Dianne Mattisse 27:35 How about how is the insertion? How is the placement? Does it hurt? Does it scar does it? How is the surgery? You know, they all like to think it's surgery and everything? Because listen, when you're thinking about that you're thinking about, I don't know, maybe they're thinking of a transplant or something. But it's a very simple thing. And there's a lot of other medical procedures now that use these placements under the skin. There's hormonal ones. I know there's a testosterone one, I think there's an there's one for birth control now. So it's it's, you know, very upfront technology that's being used a lot in medical treatment. So it's not anything, you know, that people should be afraid of. I mean, this is an advanced, very advanced product, I think, and simple life is so much simpler with this, you know, just, I mean, once every six months now you go in, I mean, you're it's 15 minutes, and you know, I mean, the 10 minutes, I'm waiting for the Lidocaine to work. That's, that's the biggest thing.
Stacey Simms 28:44 Do you have scoring? Do you have a scar on other very
Dianne Mattisse 28:46 fair, like I said before, and I don't scar and usually the FDA requires that they switch arm to arm every six months. So like, they'll do the left arm and then they do the right arm. So in that meantime, I can't even like when I go back to have the removal. If if the sensor has already expired, like but I usually try to go a couple days before. If it's expired, of course, it's not going to have a reading. And then, you know, I have to really figure out where it is because I don't see the scar anymore. There is actually I think it's so tiny that it heals up. I mean, you're supposed to leave the bandaging and everything on instructions or five days. Usually, it's healed up in about two or three days completely healed. You can't even really see anything. So I mean, some people would scar I would imagine, but I mean, I think you have that's the trade off or having a totally accurate CGM. That's easier. That's less expensive than things that are failing and you have to replace all the time I mean, for me, it's, it was never I never thought twice about that. I may be by my age, I have a lot of scars anyway, from falling, and it's like, you know, I'm not worried about having perfect skin anymore. So, but no, actually, because I'm fair. I, I did think about that, but but only for about two seconds.
Stacey Simms 30:25 Well, you know, and if you don't mind, um, you know, I'd love to talk about aging with type one. I mean, you know, it's different. Life is different from 20 to 50. Certainly, you've mentioned like, you don't run so much anymore, you know, so I don't want to make a whole Pash of like we all know we're getting older. For lucky, we know we're getting older as like, but you know, years and years ago, people weren't living past 50 type 1 diabetes, let alone 70. And I have listeners in their 80s. And we know people in their 90s with type one. So it's a pretty wild. So I
Dianne Mattisse 30:58 73. It's changed 73. My A1C is 6.6. I'm so proud of that. Because when I first got the Eversense inserted, it was in the mid nines or a little bit higher. It wasn't 10, but it was in the night. So I've made tremendous strides in getting it down being healthier. And I'm just very proud of that. Because you know, I would like to be in the fives but I, you know, I'm fine. My physician is fine with it being in the sixes, getting rid of the low blood sugars was a huge thing for me because many, many people die in the middle of the night from having a low blood sugar. And that still happens to people and really with CGM and all these choices, it shouldn't happen. And the fact that the CGM gives me this vibration, I know all anywhere, anytime, if I'm out eating, if I'm in bed sleeping, I know I'm going to get a vibration that's going to tell me what's going on. So that has really helped me be happier in my life. I think I worked 25 years in health care as administrator and then 25 years is real estate. Now I'm retired but I do a lot. I have a charity I'm treasurer for up here in Alabama, that does art. We provide art classes and projects for kids in the schools here, elementary schools and some high schools. I have a little word working business with my sister here, we make maps of the lake and we sell to all the little stores around here and everything. And I keep very busy, I also do a transaction. I'm a transaction broker for my son who's a broker in Florida. So I do a lot of paperwork online for him. So I keep very busy. But the fact that I'm getting older, you know, and I know people will say this, you talk to anybody old, your mind is still young, you still look you know, when you look in the mirror, you go Who is that old lady, but when you when you when you feel good, and I feel so much better with a normal blood sugar. I don't feel like I'm that age, you know, I mean, I I enjoy traveling, I traveled to Florida quite a bit because of a lot of relatives and friends still down there having been there for a long living there my entire life basically. And I feel comfortable traveling by myself, which is a huge thing. Because I can tell you 10 years ago, I did not I mean, I always wanted to have my husband or my son or somebody with me. So that getting old and having diabetes. And I've been very lucky because I don't have any side effects. I don't have any complications from having diabetes for so long. I mean, on one hand, I was very lucky, I didn't have to go through puberty or childbearing. So I got it when all that was done, had my children and everything. But on the other hand, you know, 33 years when I think back 33 years is a long time to be dealing with a chronic disease 24/7 And I don't think anybody really understands that it is a full time job. It is something that is with you 24/7 You cannot forget about it even for a day. I mean, it's dangerous if you think you can, but you just can't. But getting older. I just like to I'm so excited to see all the things that have have come from diabetic technology, all the opportunities that we have now. I love being part of the ever since group of people because honestly I never knew anybody growing up, you know, during when I was diagnosed at 40 I never knew another type one. I felt very isolated and kind of depressed about it because I'm like, even in my family, they didn't really acknowledge it because Nobody had the knowledge about it, they knew a lot about type twos and you should lose weight, eat better and exercise, but they didn't really know much about why I was a type one or how I was managing it or how encompassing it was to your life. So I think just having better communities, among us is has helped tremendously for me. And the ever since has just been, like I said, before, life changing for me, no matter what age I would have gotten it, I think it's just the best product because it's the easiest product to use. And I've used them all, I mean, you can't name one that I haven't used and, and I've gone through the progression from when they had to put it on the hospital until the very newest ones. And nothing really, my body didn't like them for whatever reason. But getting old is great. I just look at it and go, I have friends from first grade still, that I see when I go down. And I'm like, you know, and they, you know, most of my close friends know when everything and they, they are very supportive, but they don't really understand it. So now that I understand it better. I'm okay with that. I mean, I think age has just made me feel like, Hey, I am so lucky to be here and feel as good as I do can be as active as I want to be. No, I don't run anymore, and I don't ski anymore. I last skied when I was 65 And I'm like, hey, that's it. I'm done. I'm not doing that anymore. I you know, I got away without ever having a broken bone or anything. Or last time we went, you know, I went with a bunch of younger girls and, and family, bunch of family. And and I'm like, Hey, I'm skiing is good as he's 40 year olds, but I'm not risking it anymore. Yeah.
Stacey Simms 36:45 So I meant to ask Do you know is ever since covered by Medicare? I can look that. Yes, I
Dianne Mattisse 36:49 did. Absolutely. Now the first couple years, it was not. And my husband I made that decision to pay out of pocket. But yes, it is covered now. That's great. Yes, right. covered. And it covers the insertion and the removal for the physician also, which I think some of the other insurances don't but but yeah, that was not the deciding factor for me. I mean, we paid out of pocket, and and we just knew it was going to be the best thing for me.
Stacey Simms 37:18 Good to know, though. I mean, it's really interesting, again, with a lot of my older listeners, you know, and as we are so excited that people with type one are living to Medicare year and beyond, right, it's really important to look at these things. It is it's a deciding factor for a lot of people. Yes. Okay, before I let you go, Diane, how did you get hooked up as an ambassador? I mean, it makes sense. You're the very first patient in America. So I guess it's kind of a dumb question that everybody wants to speak out, you know, right?
Dianne Mattisse 37:42 Well, I never Well, okay. So like I said, I never really was in a group of people, I didn't really even have anybody. You know, nobody in my family, nobody to talk to. So the team came from Atlanta, when I had my first insertion, placement, they'd like you to lose placement. So when I had my first placement, the team from Atlanta came, and that was six years ago, this July. So the person who is head of the sales now I believe, she was on that team, and she came in, and we kind of hit it off. And then I think it went on for about, I think six months later, they decided to get a group together, and call them the patient ambassadors. And that's when that is before a Sensia actually got began, began to be involved in the marketing. So that was when Sen. psionics was doing it. So this person picked eight or nine people. And we still have, I believe, four or five of the original ambassadors, and now it's more demographically varied. You know, we have young, I obviously, I'm the older person, you know, but it is good, because I think it's, you know, it shows that it's for everyone. I mean, there's not an age barrier. And there's not a weight barrier. There's not any kind of barrier, except you have to be a type one and you have to want this device. And it's just but that's how are we got hooked up and we kind of it kind of slacked off a little bit when we became the marketing went over to a Sensia. And they had that agreement with a Sensia. And then they picked four or five of the original people and and you know, we're still very close, we have our own little group chats and things like that. So and it's good because now I know if I have a question or if they have a question we can get with each other. It's it that is the greatest thing. I think younger people or anybody now, Facebook has pages, you know, people like you who are spreading the word. I mean, if there had been This, I think I would have felt so much better. I mean it I'm almost getting teary here. But I think I would have felt so much more inclusive, then than I felt for many, many, many years. So I think that you're doing a wonderful thing by spreading the word and helping people and sharing. And I think you know, somebody like your son, who's 19 is going to have a whole different experience with this than I did. And, you know, because you just by 40, you've gone through all those teenage angst and everything but and I was done having children everything, but then it's like, what the heck now? i What is this, you know, coming on, and I was healthy at that time. And I'm like, What did I ever do? Never did drugs, never smoked. Never, you know, there wasn't all the information about immune system, autoimmune and it runs in my family. We have so much autoimmune disease, but not type one. Yeah. So but the patient ambassador, it's a greatest group, we have a blast when we get together. That's awesome. Well,
Stacey Simms 41:10 doing the show is truly a privilege for me, you know, getting to talk to people like you and learning so much. I really appreciate it. Diane, thank you so much for joining me. I hope we connect again soon. So
Dianne Mattisse 41:21 and I hope you are very good at that editing.
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