Julie Alred on the Rose Bowl Parade Float

[podcast src=”https://html5-player.libsyn.com/embed/episode/id/18377396/height/90/theme/custom/thumbnail/yes/direction/forward/render-playlist/no/custom-color/3e9ccc/” width=”100%” scrolling=”no” class=”podcast-class” frameborder=”0″ placement=”top” primary_content_url=”http://traffic.libsyn.com/diabetesconnections/Ep_362_Final_Classic_Julie_Allred.mp3″ libsyn_item_id=”18377396″ height=”90″ theme=”custom” custom_color=”3e9ccc” player_use_thumbnail=”use_thumbnail” use_download_link=”use_download_link” download_link_text=”Download” /]Julie Allred received two separate islet cell transplants ten years ago. How is she doing today?

Diagnosed at age 10, Julie was told she would never have children and she wouldn’t live to see age 30. She’s proved her doctors wrong on both counts – her daughter was married a few years ago – but she did have a lot of trouble with unpredictable and debilitating lows in her 30s. These lows were so unpredictable and dangerous that she not only stopped driving, she barely left her house. Then she found out about a clinical trial of islet cell transplants.

This interview was first aired in January 2016

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Episode transcription:

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by Inside the breakthrough, a new history of science podcast full of did you know stuff.


Announcer  0:13

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:19

Welcome to a classic episode of the show. As always, I’m thrilled to have you here. Glad you could join me. And these classic episodes are where we revisit terrific interviews, really great guests from the early years of this show that you might have missed the first time around.

There is a new excitement right now about islet cell transplants, this thinking has been around for a while. But the problem has been that once the cells are transplanted, they’re immediately attacked, you know, so the islet cell trials of the late 90s and early 2000s, didn’t pan out the way that we had hoped. But new science, new technology is showing a ton of promise. And we’re going to do some future episodes on what’s in the works. There are at least two really big projects moving to clinical trials. I’m thrilled about this because it always seemed like it made so much sense. And this kind of stuff was around right as we were coming into the community, me and Benny and my family 14 years ago, it was kind of the tail end of when they realized that while it worked well for some, it wasn’t going to be the cure type of research for many, many people that it had shown so much promise to be. But it really is important to remember that islet cell transplants worked really, really well for some people and you’re going to hear from one of them today.

I spoke to Julie Allred in January of 2016. More than five years ago now. She was diagnosed at age 10. And she was told she would never have children and that she would not live to see 30. She has proved her doctors wrong on both counts. Her daughter was married herself few years ago. But Julie did have a lot of trouble as she moved into her 30s with unpredictable and debilitating lows. These low blood sugars were so unpredictable and so dangerous that she not only stopped driving, she barely left her house, you’ll hear her talk more about that this was not your typical low that almost everybody who uses insulin has experienced. Then she found out about an islet cell transplant clinical trial. She shares the whole story and I’ll give you more of an update on how she’s doing in just a moment. Spoiler alert. She’s doing amazing.

This episode of Diabetes Connections is supported by inside the breakthrough a new history of science podcast full of did you know stuff. The most recent show is all about unpopular science. One of the stories, it’s bonkers. It’s about a scientist who discovers the importance of washing your hands. The death rate at his hospital drops once he starts telling people to do this. But then they think he’s insane. They discredit his theory and they lock him up and they stop washing their hands. You have to hear it. You can find inside the breakthrough wherever you found this podcast, and this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Judy Allred had two islet cell transplants, one in 2011 and one in 2012. She is going to tell the whole story here in just a moment. But I want to give you a quick update on how she is doing now. 10 years later, she says she still uses just a few units of basil insulin a day. She does wear an omnipod but she says she uses it just for basal. She very rarely boluses. And she says the only time she goes low is if she quote makes a bad decision when bolusing for food because she’s so rarely does it anymore. This really changed her life. I should also mention that I know Julie because she was our elementary school nurse. That’s who I got to send a little Benny to when he was in grade school. How lucky was I?

Julie Allred. Thank you so much for joining me.


Julie Allred  3:57

Thank you for having me, Stacey. I’m excited to talk with you. Yeah, I think this


Stacey Simms  4:00

is gonna be fun. It’s always great to. For me, it’s always interesting to learn things about people with type 1 diabetes, but it’s also fun when I get to talk to to a friend. So thanks for agreeing to do this. Tell me your story. Yeah, tell me your story. You were diagnosed with type one, when you were just 10 years old, right?


Julie Allred  4:20

I was 10 years old and that was in the late 70s. So why can I tell people always that was before we had all the technology of course that we have today before we had manmade and storm. No glucometers we didn’t even have Diet Coke. You know, what was that good old unsweet tea with a saccharin tablet. Those were your choice.


Stacey Simms  4:42

That’s amazing to think about. How did you how did you manage diabetes before home meters.


Julie Allred  4:50

There was no homie here correct. So I use urine that we put in the test tube with some little tablet sets. He has done turn colors and it was a good gang. If you only do that, if you felt bad, there was no certain schedule to when you tested your urine. And as you’re probably aware, urine sugar in your urine shows up about six hours after it shows up in your blood. So really, when you tested that urine and found out, you know, you had sugar there, it was well beyond the time that your blood sugar would have been half. And you didn’t do anything about it. When you saw it there, you just made you aware, there was that insulin you took in the morning insulin, you took it bedtime. And in the middle of the day, there was nothing, there was no sliding scale, there was no carb counting. Nothing like that we ate by the exchange diet, which some people may be familiar with, and maybe not the day, but so many carbs, so many fats, and many fruits and vegetables. So all the things that everybody is familiar with now all the technology, all the things we have to keep ourselves healthier and and make things easier for non existent bands.


Stacey Simms  6:04

Now I’ve heard you speak and you’ve talked about how the doctor said you were not expected to live to 30 that you would never have children. Of course, you do have a great a daughter who I’ve met. But But did they really tell you that? Or was that something you were just aware of?


Julie Allred  6:20

They never told me I found that out and my 30th birthday party. Because my husband had a birthday party for me, of course, my family came my daughter was three at that time. So uh, my mom’s sitting in the corner crying, you know, we’re having a party, I’m like, what’s wrong. And that’s when I found out when she told me there, that when you were diagnosed, they shared with us that you were not expected to live to age 30. And that you definitely would not be able to have children that was just not in the cards for people who are diagnosed. And again, you know, diagnosis, disposable syringes were the new thing. So just all the technology that that has come about, exist in the time that I’ve been living with diabetes is amazing.


Stacey Simms  7:07

I’m just trying to have the perspective that your, your mom,


Julie Allred  7:10

your mom had? Well, I think about that. And you know, you mentioned I’m a school nurse, my school nurses, when I was a little girl that That being said, I didn’t check my blood sugar at school. So mom packed my lunch, I ate that. But other than that there was not really anything, per se to do for me at school, you know, unless I complained about not feeling well, or something the teacher would call her but they’re just the things that are available today. The things that we do today to manage things so closely. We’re just not available Batman. So yeah, it was not a concern.


Stacey Simms  7:46

I’m just trying to think of her being told you would not live to be 30. And then being at your party, must have been an incredible ride for her. But as you got older, you began to have some real difficulties living with diabetes. I know you had a lot of episodes of low blood sugar. Tell me about that.


Julie Allred  8:05

My dad, so I did very well, I actually, you know, got a insulin pump in 1990, of course, glucometer in the early 80s. So I was kind of always trying to stay on the cutting edge with technology and have the newest latest and greatest thing to help me manage. And I did really well. I still was doing really well as far as how I had managed, not that I always did absolutely everything I should the best I should. But I had been fortunate enough to not to experience any of the complications that are a lot of times associated with type one didn’t have any problems with my kidneys, I had great steel. None of those things that a lot of times people began to have problems with as they move into 30 plus years with type one. And I was 34 years with type one, the problem that I was experiencing, experiencing was those unrecognizable low blood sugars. And that started probably in 2007 or eight somewhere around there. It it became more difficult for me to know when I was having a low blood sugar, the symptoms changed. And they became less evident to me. And as time went on, they just eventually just went away. I didn’t have any signs or symptoms until I was so low that I couldn’t help myself. I would get to the point where I realized that I needed to do something that at that point, I couldn’t do anything for myself. I had to rely on someone else. So you were in that slow traveling.


Stacey Simms  9:46

You were driving, right?


Julie Allred  9:49

I was driving. And many times I would even was married that’s my daughter who was now will be 21 next week at that time she was you know in her Team so not driving yet but a couple times we’d get to a stop sign or a stoplight and she would put the car in park and take the keys away and call my husband because she knew you know that it wasn’t safe. And I did have a couple episodes where I ran off the road. Fortunately for me, and others never hurt myself or anyone else. But it the discussion, the next discussion at my doctor’s appointments going to be taking my driver’s license away, because that was unsafe.


Stacey Simms  10:27

It’s so scary to hear about.


Julie Allred  10:29

All that being said, I still had the latest and greatest, I still have the newest pilots. I had a dexcom CGM. At that point. I was doing all I needed to do. And of course, my medical team was doing all they need to do to help me. It was just that that was my complication. I guess you can put it that way. But I just was not able to feel those lows and do anything about them. And enough time to help myself.


Unknown Speaker  10:55

Is that how you get into work was


Julie Allred  10:57

not an option either. Yeah, I was working about 10 hours a week was all I could manage?


Stacey Simms  11:02

Is that how you were able to get a trial?


Julie Allred  11:05

Yes, that is how I was able to get into the trial because I laugh and tell you how to be a fairly healthy, unhealthy diabetic to qualify for the study that I participated in. That being said, you could not have any kidney issues, all those things that I talked about that I was fortunate not to have experience. But the low blood sugar. The hypoglycemic unawareness was the key to qualifying for the study I participated in. So they asked me about how many low blood sugars I thought I had in the past year, that one of my first visits, I have no idea. I was horrible. I was mad at writing down my blood sugars. But we went back and looked at at the month, at one month that had passed. And from that guesstimated that over a 365 day period, I probably had 300 I think we came up with 386. Wow. was until a by definition for them a low of anything. 54 below.


Stacey Simms  12:05

Oh my gosh.


Julie Allred  12:07

Right. Wow. How did you


Stacey Simms  12:09

feel during this time? Was this something that you were used to? Or was it did you feel lousy every day?


Julie Allred  12:17

No, I said, I felt bad. And and the left felt bad. But I didn’t realize how bad I felt. A lot of it was my normal. I slept a lot. You know, when I was at home. I felt like I never slept well. And I guess I probably didn’t two, between two and three a 3am was probably my worst time. That’s when I would have the most severe loads. And of course, you know, everybody else is asleep, too. So that makes it even more difficult. But I just always my, my constant thought was when I could lay down if I got up to do something, it was how quick Can I get finished with it. So I can sit back down so I can lay back down. Because to me all I saw, you know, 15 minutes of laying back down, and I’ll feel better. And that was just never the case.


Unknown Speaker  13:10



Julie Allred  13:12

I didn’t do and the probably the year, year and a half before my transplants I was became pretty isolated. I didn’t say that at the time. But I say that now, I just didn’t go and do things. I didn’t go out of the house a lot would find an excuse not to go to a party or you know not to go to dinner with somebody because I was always afraid of what was going to happen when I was there. And I of course didn’t do anything by myself. Nothing. I didn’t even go to the grocery store alone. Somebody was with me all the time. So that was very frustrating for me. And for my family. Of course, let’s talk


Stacey Simms  13:50

about the clinical trial, you have been through two procedures right for transplanted pancreatic islet cells, the cells that produce insulin in 2011 and 2012. And I’m gonna I’m gonna walk through this, so tell me if I get this right. But this is the operation where basically they they put the islet cells into your into the liver, right, which helps. And then they take over the job of making insulin. When you went through this, did you know was it the kind of trial where and I forgive me for my ignorance? Are there people getting placebo islet cells? Or is it all everybody gets the real thing because you’re going through surgery and you know,


Julie Allred  14:33

right? Everybody gets the real thing? That’s correct, because these are human hours that are that are donated from organ donors just like any other organ would be donated. So they use the whole pancreas normally for a pancreas transplant. But a lot of times even when you have a donated pancreas, it can’t be used because in the process of organ donation, you know, of course thanks at a higher level some things at a higher level level than others, the kidneys and pancreas work together in the body and to to isolate both of those organs. Of course, the kidneys are more useful, you have two kidneys, those can go to two separate people, all the necessary blood vessels that are needed to do those transplant go to the kidneys. First, the pancreas is next on the list. So a lot of times even though you have a pancreas that may be suitable to use, you don’t have all the necessary blood vessels that go with them. So that keeps it from being available for transplant as a whole organ. So what they do is use that organ and isolate the eyelet sales from that pancreas and transplant them. And that is how I received the alpha cells I received. How, yes, that’s what see those on the waiting list for a heart or, or lung or kidney or whatever, and the head has to be matched in the same way you have to go through all those all those same steps. And then check with your organ donor.


Stacey Simms  16:00

Do you then after the surgery take immunosuppressant medications?


Julie Allred  16:06

Yes. How is that because everyone that


Stacey Simms  16:09

I’m sorry, Julie, everyone that I’ve heard talking about this, they always say, Well, that sounds great. But the drugs you have to take to prevent rejection are so harsh. How is your life since then?


Julie Allred  16:21

Well, it took a little bit in the beginning to get all those things regulated. And and I’m not saying it was easy. But it was a lot easier than what I had been going through. So taking those five or six pills a day seemed like nothing to me, compared to the life I had been living compared to the to a low blood sugars to not being able to work, all those things that have, you know, had gone on before. I did have a little problem with Jia upset in the beginning. But again, it’s just getting all their things regulated, you know, for each individual. And that happens with anybody with a transplant. And once that happens, I did not experience any terrible side effects. I still take those medications on two times a day on a daily basis. And they’re just part of just part of my life. Now, a lot of people say, Oh, you have to take pills now. I do. But all those other things that were issues or are not issues anymore. And I guess it depends on how you look at it. And it was a wonderful trade off for me. I would do it 100 million times over again, all the all the bad parts, the good parts, were just a million times better. Well, here we are five years ago, there were issues right here we are almost five years later. And when I been here, kind of not participated in that study, I would say I would not be unfortunately. And I am I have a driver’s license, I work a full time job I volunteer I’m engaged in, in the life of my child and able to participate and do things that I have always wanted to do. But always felt a little bit hesitant to do and especially in this, you know, four to five years prior to the transplants that I just didn’t allow myself to do those things. So people say well, you have a normal life, not really life like I’ve ever known. That’s a good point.


Stacey Simms  18:21

Tell me about what you do for diabetes because I remember reading that initially at least after the surgery you still worn insulin pump Do you still check your blood sugar? What do you do now? Do you consider yourself cured?


Julie Allred  18:34

If you can’t say cure technically and no I’m not because I did were the insulin pump after the first transplant because even though those eyelets were working, I didn’t get the equivalent number of hours to what you know a normal person would have. So I continue where my insulin pump I went from taking 75 units and on a day to 11 units between that first and second transplant and then after the second transplant I was insulin free for 96 days completely insulin free. Again I had a little issue with some of the medications and of course the major side effect to those medications or damage to your kidneys and or pancreas. So they did damage I had some toxicity to one of the medications and they believe they damage the islets a little bit. So I started back on insulin and June after the second transplant unsavoury of 2012. And I’ve taken a small amount of insulin at bedtime since then,


Stacey Simms  19:39

but that’s it. You’re not wearing an insulin pump currently.


Julie Allred  19:41

I’m not wearing it and so on top. I do not have low blood sugars. I do not have high blood sugars. Do I eat whatever I want. Not whatever I won’t I just don’t think that’s in me. I mean, there’s still that there’s still always that After in the bathroom, I’m always thinking about what I’m eating, how many cards bed what you know, what would that do? What is it going to do now? Because that’s part of being in the study? Is there not a lot of answers what to expect in the future? That’s part of participating in the study is, we will let them know what to expect in the future just by following us. And there were 273 participants in the study that I’ve participated in. So we’re part of what’s going to happen in the future. They’re getting all that information from us. So yes, they still follow me. Yes, I still check my blood sugars and provide them with that data.


Stacey Simms  20:36

But would you mind if I asked him, please don’t answer if it’s too personal. What is your typical blood sugar?


Julie Allred  20:42

And my last day once he was 6.20? Wow. Yeah, right there. Again, right on the edge. Technically, if you look at the textbook standard, Dima non diabetic, maybe not. But I’m a million times better than I’ve ever been absolutely. Great.


Stacey Simms  21:00

Before we leave this part behind, because I definitely want to talk about the school nurse component. Tell me about the


Unknown Speaker  21:09

visit the rosebowl


Unknown Speaker  21:11

talk, tell me about right.


Stacey Simms  21:12

Yeah, the Rose Parade. Tell me about the Donate Life. Rose Parade, the float that you were in for Donate Life.


Julie Allred  21:19

Right. So in 2000, January 2014, I was the first islet cell recipient to add on the Donate Life float in the Tournament of Roses Parade. And so I ratters on that. Riders on that float are all transplant recipients, and all the float as well, or floor graphs or pictures of donors that are honored on the float. And then there are also people who walk around the float and those people are living donors. So they’ve all usually donated kidney. And Donate Life has had a float in the rows pray for I believe this was the 12th or 13th year. So I was sponsored by Emory Transplant Center to go and represent Emory transplant and outsell recipients on the donate lifeflight. What was that? That was amazing. Very, that was an amazing experience. So you know, I’ve always watched the Rose Parade on TV and think how fabulous that is and and realize it Yeah, that’s a big deal. That’s a big parade. But I had no idea until I went participated in the whole event. And we were there for six days, you know, a few days leading up to the price. So I was honored to be able to help decorate the float place all those, you know, some of those roses on that float. So the donatelife float, the bottom of the float is always decorated with resins that are dedicated either in honor of memory or memory of someone. So they all have a personal tag with a handwritten note. And so I was honored to be able to place those verses on the float. And the rule is that you read every note on every rose before you put it on the float. So that was that was really a special experience for me, David, my husband got to go with me and help. As we decorated, we spent three days helping decorate the float. And then of course, I read it on the slide on New Year’s Day. But again, a tremendous once in a lifetime experience to meet so many wonderful people from all over the country and other parts of the world as well. transplant recipients, donor families and those special living donors. Wow,


Stacey Simms  23:28

that’s an incredible experience. I was so exciting to see you part of that. So Julie, we’ve known each other for few years, because of the local jdrf chapter, you’ve done so much work with them. And, you know, I was on the board for a while there and we’ve kind of circled around each other. But then a couple of years ago, you became our school nurse. And so I have to put a caveat out there as we begin this conversation, I promise I’m not going to ask you anything specific. I understand the HIPAA laws and I understand the constraints you may be in. Because you know people may know what school you work at. But I just thought it would be a great opportunity. Because I talked to a lot of parents who have difficulty dealing with their school, the school nurse or the school principal, or teachers don’t seem to understand the needs of kids with type 1 diabetes, they they may insist that the kid go to the nurse for every single thing. They may be frightened of the kid. And I was just curious if you could share some advice. I know you and I have such a wonderful relationship and we never give you any trouble and our child is an angel so we’d have to go down that road.


Julie Allred  24:34

But they all of course,


Stacey Simms  24:36

what but you know, it’s interesting before, I should point out, we have four kids at our school with type 1 diabetes, all of whom manage very differently. It was very different, right? Not even in terms of the technology because there’s different pumps. One child has been on MDI until very recently, transitioning from injections, but every parent is so different. And it’s been a lovely experience because the school has Never said to any of us, you need to do it this way. What’s your advice for parents, though, for working with this, right?


Julie Allred  25:06

The biggest piece of advice I can give to parents is to meet with your teacher and meet with your school nurse. I guess I’m sort of at an unfair advantage when it comes to managing my children and helping them manage at school and the relationship I can have with them, because I’ve lived with type 1 diabetes, and that that does give me a very different perspective. As you know, and as most of the parents know, the understanding that the the general population has a type one is sometimes a huge misconception. And, and to help them understand the communication between between the parent, the teacher and the school nurse is the key. They have to be able to understand and you are the person to help them understand your child. The other part is that every child is different. And I think that’s hard. Sometimes for teachers, especially a little bit hard for the nurses as well, because there is no black and white with type one. Every child is different, every day is different. Sometimes every minute is different. And you just have to be able to go with the flow a lot of times and so there’s not all you can’t always answer every question for them and give them give them an example of everything that might happen. You know, in a school day, it’s all about communicating again, with a parent, the teacher, thing about that school nurse as a teacher communicating with the child. Like your son, a lot of these children are diagnosed at a very early age. And even sometimes by the time they get to kindergarten, they’ve been doing this a while. Yeah, they know a lot about type one. They know a lot about how domains things themselves. And sometimes that’s hard for people to understand that a kindergartener really can’t check their own blood sugar, they really do understand, you know, how this technology works, that these kids do. So having that relationship with the child, for the school nurse to have that relationship and the teacher, to have that relationship with the child and keeping the lines of communication open, I think is the most important thing. Again, because they all managed differently. Nobody way is right or wrong, nobody has better than another’s. It’s all based on that that particular individual child and what works best for them.


Unknown Speaker  27:35

What I love about you, and if you


Julie Allred  27:37

can continue what you do at home, if you can continue that at school, it just makes it so much easier for everybody, for the parents and for the children. And the teachers, I think and the nurses say eventually that it makes it easier for them as well.


Stacey Simms  27:50

Oh, yeah, you don’t want to change management, I was just gonna say, what makes me laugh. And what I love about you, too, is you do know this so well, that, you know, My son has gone through times where he’s been, oh, my diabetes, or he’ll give somebody that puppy dog eyes. Oh, and you don’t get into any of that. It’s great. You’re just like, Look, I know what you’re doing. I know where I’ve been, you know, go back to class or, you know, we’ll deal with it or whatever. And I think that that perspective is so valuable and wonderful, they really appreciate that. But if if a parent is, really, I think a lot of this comes from fear. That there there may be, as you said, misconceptions, and I see a lot of parents, especially online, who will write things and they’re just on Facebook, they don’t really mean it, I think half the time, like I’m going to go to school, you know, I’m going in swinging, or I’m really upset, and I’m going to give them a piece of my mind. Can you speak to that for just a moment, just in terms of, you know, trying to, I always tell people, you know, approach as a team, even if you hate these people, they got your kid for eight hours a day.


Julie Allred  28:52

Right? They do. And I can say, not as a parent of a child with type one. But as, as a type one who works with these children that have type one and, and I know, I feel like where they’re coming from a little bit better, maybe then not better than a parent does. But in a different way than a parent. I get it that it’s hard to trust someone the first time that you send them out of your sight. To know that they’re going to be taken care of like you take care of them at home. So again, approaching it like you said, as a team, sit down with everybody don’t have the separate meeting with the teacher and the nurse, everybody meet together so that you’re all hearing the same thing at one time you come up with a plan that works for everybody, because a lot of times nurses not aware of every the schedule in every classroom, and a lot of times everybody in the second grade does things pretty much the same, but a lot of times they don’t So again, it’s knowing all the specifics of what goes on even hour to hour during the day and how we can best manage that during the day. And then what do we do? If there’s a problem? You know, who’s responding, who’s gonna call Who? And then even comes down to sometimes, you know, does the nurse needs to call the parent? Or does the teacher need to call the parents? And just coming up with the sample the answers to questions like that, but don’t get you bogged down during the day, when there’s so many other things going on. Meaning as a team, listening, what the child has to say to is very important, because they’re the one living in that environment. They know what they’re comfortable with. They know how comfortable the teacher how comfortable they are with the teacher, how comfortable they are with the nurse, how long does it take them to get to the nurse? If they’re not in their classrooms, if they’re in another area of the building? You know, how long does it take to get there? What should we do then involve the child because again, these kids are smart. Most of them are very independent. And they have a lot of good ideas and information that I think we need to consider and take into, you know, taking into consideration when we’re making the plan for the for the school day. It’s great advice. A lot of it is to I think people are very intimidated by the fact you know, especially a new teacher, maybe who’s never dealt with this. Again, sharing with him and showing them bringing the child before school starts if you can, if they’re newly diagnosed tremor day or two before they’re going to be there a whole day, and let them see the child checking their own blood sugar, administering their own insulin, using their insulin pump, that they really are independent. A lot of times when they do they need a second set of eyes. Do they need adult supervision? Yes, they do. But many times, that’s just what it is supervision, double checking. These kids know what to do. Yeah, that’s


Stacey Simms  31:59

a great point. We’ve done that with a lot of teachers. And once they realize that they’re that they’re not going to become a nurse or doctor while they’re to die. That really assuages a lot of fear.


Unknown Speaker  32:09

So Julie, what’s next for you? Does


Stacey Simms  32:11

this those trials continue indefinitely? Do you go back for periodic checkups? Are you scheduled for more surgery if I can be super nosy and ask


Julie Allred  32:20

right now, just yearly checkup? am considering another transplant that’s kind of out there on the horizon? It may be a little while. And then there are all those things like encapsulated owlets that are going on right now. So there will be another adventure for me, let me just say that I’m just not sure what it is yet. But in the meantime, I’m happy to be working in school to be sharing my experience with these kids. And people say you know, you’ve had such success. Yes, I have. Has it changed my life? Absolutely. It has has it changed the life of my family? Yes. But it’s also changed the lives of other people. I said, this goes way beyond me. Hopefully it’s changed, eventually will change your life safety and the lives of all the kids and all these parents and they’re dealing with this on a daily basis. And whatever they learn from me, whatever successes I have, whatever mistakes that we’ve experienced, we learn from it all. And so the hope is that down the road, we’re all going to have the experience of living those days without type 1 diabetes. That’s that’s just what I’m looking forward to.


Stacey Simms  33:38

You know, I love doing this podcast, but it is hard to be a news interviewer when I’m trying not to cry. I tell you, Julie, when you talk about this, I don’t know if it’ll be this type of transplant, or it’ll be encapsulation. But I know that the information that comes from people like yourself, who who sacrificed I know, you say it’s good that you did it. It’s wonderful. But you’ve sacrificed a lot to to get to this point. I know that information will help people and thank you so much for doing that.


Julie Allred  34:09

Absolutely, I would I would do it a million times again. Julie, thank


Stacey Simms  34:13

you for talking to me for sharing your story for making me cry. That wasn’t fair. I really appreciate you joining me today.


Julie Allred  34:21

Absolutely appreciate you speaking with me and appreciate our friendship, and all that you do for the tight bond community. I mean, you are the go to person in this area. And we love hearing you and we we truly appreciate all the information that you get out to us, sometimes on a minute to minute basis. It’s really it’s valuable information. And if people ask me again, why I’m still you know, involved because it’s, it’s part of who I am. I want the best, not only for myself, but for all of you as well. And it’s just it takes it takes the whole community to support each other and we need to continue that support and we thank key for all you do to provide support to the type one community.


Stacey Simms  35:03

I’m leaving it there because I’m gonna start bawling.


Unknown Speaker  35:10

You’re listening to Diabetes Connections with Stacey Simms.


Stacey Simms  35:16

I’m gonna link up some stories that were done on Julie in the past and some information on clinical trials and islet cell transplantation. I’ll put that on the show notes at Diabetes connections.com. And the episode homepage as always has a transcription, I do have to share one embarrassing story. It’s embarrassing for me. I remember hearing Julie speak for the very first time Vinnie was not yet in elementary school, so and she was not even at that school yet as a school nurse. But I heard her speak at a jdrf event. And I’m embarrassed because I kind of didn’t believe her. I was in a moment of time. And I don’t know how you reacted when your child was diagnosed, or when you had your own diagnosis. I did not want to hear about cure, I was very cynical, I was closing my heart to those things. I just didn’t want to hear it. I just wanted to get through the next couple of years of learning how to do this and keeping him healthy. And that was just my reaction. And when she spoke about islet cell transplantation, I was not in the right place to hear the message, as some people might say, and I talked to her afterward, I don’t think she even knows this. And I was just kind of politely nodding. And people were saying, you know, oh, you should talk to her for your blog, because I was blogging at that time. And, you know, it was on the local radio. So you talk to Julia, what a cool story in my head, I’m going well, I’m not gonna do this. This is false hope this is good for anybody. And this is going to work. You know, I think I was just in the wrong state of mind. And so I’m glad I spoke to her. I’m glad I learned more about her story. And that, of course, when I started the podcast, she was one of my first guests very excited about the future of islet cell transplantation. Sure what she went through is not a cure, and it didn’t work for everybody. But you can hear how much her life changed. Absolutely amazing. I’m thrilled. Think about all the stuff that they learned from it. Just great.

Okay, coming up next week, I’m talking to the people from Pro vention. I say it very clearly, it’s not prevention, it’s prevention. This is the company behind to please him up, which I say as clearly as I can. That is the drug that is showing such promise of delaying the onset of type 1 diabetes. It is in front of the FDA right now. We’ll be explaining the whole thing. But the great folks from prevention. By the way, the gentleman who works there that I’m talking to is not only a pediatric endocrinologist, he is a diabetes camp guy. He’s the director of a big diabetes camp. And so he gets it and he gets emotional just like the rest of us. I really enjoyed talking to him. That’s next week. Thank you so much to my editor john bukenas from audio editing solutions. Thank you so much for listening. I’m Stacey Simms. I’ll see you back here next week. Until then, be kind to yourself.


Benny  37:46

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