#746 In Vitro, Pregnancy and Loss

OmnipodJuicebox PodcastInterviewType 1 Diabetes

Sep 2

Karen has type 1 diabetes and is here to talk about IVF, pregnancy and miscarriage.

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Scott Benner 0:00
Hello friends, and welcome to episode 746 of the Juicebox Podcast.

Karen has type one diabetes, and she's on the show today to talk about what it's like to manage blood sugar's through pregnancy. We're also going to talk about her experience with in vitro fertilization. And I'd like to warn you before the episode begins, that Karen expected to be pregnant while she was recording this, Karen was pregnant previous to when we recorded this episode. But she very sadly and unexpectedly was not when we actually recorded. I didn't want that to be a surprise for you when you heard it. So I just wanted to tell you upfront, if you're a US citizen who has type one diabetes, or is the caregiver of someone with type one, it would mean a lot to me and to many other people. If you went to T one D exchange.org. Forward slash juice box and filled out their survey, it's super simple to do, it does not take long at all. You'll be helping people with type one, you'll probably be helping yourself and you'll be supporting the Juicebox Podcast, there's a lot of good that goes into those 10 minutes at T one D exchange.org. Forward slash juicebox.

Today's episode of The Juicebox Podcast is sponsored by touched by type one, a great diabetes organization who has asked me to ask you to check them out. And you can do that at touched by type one.org or by finding them on Facebook, or Instagram. The podcast is also sponsored today by Ian pen from Medtronic diabetes in pen is an insulin pen that does much more than you expect. Learn more about it at in pen today.com The ink pen may cost you as little as $35. Listen to the end for details. At our house, we buy Ardens Omnipod and Dexcom supplies from us Med and you could to call 888-721-1514 or go to U S med.com forward slash juicebox. To get your free benefits check. You can find links to us med in Pen and Touch by type one in the show notes of your podcast player, or at juicebox podcast.com. All I need from you is to click on my links or to type them into a browser if you're interested in anything you hear in the advertisements. Doing that supports the show. And I very much appreciate it.

Karen 2:53
Yeah, my name is Karen and I was diagnosed with type one. When I was 35. No family history. I have a cousin once removed who has type one, but I don't think that's close enough for the doctors to even count it as family history. So it was a shock and No, no obvious symptoms. I didn't have the normal like paying a lot or thirsty or that kind of stuff. I went to the doctor for a totally unrelated reason. And then they caught it. And so yeah, it was it was shocking. And I'm happy to talk about that in more detail. But I'm in and I reached out to you to maybe come on the podcast because I was doing IVF and my husband and I were doing IVF to try to get pregnant and yeah a lot actually has happened since I wrote you so we can we can Yeah, we can go and

Scott Benner 3:59
pick it apart for sure. I want to tell you that I count a cousin once removed as a family history. Okay, I would count I would count celiac thyroid a grandmother who was tired all the time I would count on you so okay you don't I mean like it's it's weird how autoimmune pops up in people's lives but I get what you're saying like in your in your circle in your family circle there's there's nothing like that. Are there other autoimmune issues that you found?

Karen 4:27
Not Not that I know of. But then for me after the diabetes then we've had realized the infertility issues and that they think was primary ovarian insufficiency which is basically like premature menopause which is an autoimmune problem. So you know, I know when you have one autoimmune issue, you're more likely to have multiple and so I guess so I've had I've had now that pop up but no other autoimmune disorders in my family.

Scott Benner 4:59
You You don't want your autoimmune diseases to be lonely. That's a Yeah, definitely. I mean, just think of, I guess, by themselves with no one to talk to. So how old are you now?

Karen 5:10
37.

Scott Benner 5:12
So this is just all in the last two years. Yeah. Prior to your diagnosis and learning all this, had you had children or thought about having children before?

Karen 5:22
I mean, I always wanted children, but I just took a while to find the guy who I wanted to have children with. And so we just got married two and a half years ago in August. And, and so it was at that point that, you know, we started to try to have kids

Scott Benner 5:39
Oh, you got diabetes for you as a wedding gift?

Karen 5:42
I did. And actually, so I had undiagnosed terrible de diabetes at my wedding. And I didn't know and I'm so glad, in retrospect, that I didn't know at that time. And then it was, like six weeks later, but I was diagnosed,

Scott Benner 6:00
you know, my wife, and I have two children. And she's still looking for a guy worthy of having kids with. So wait a minute. So you had were you just like, thrilled you look great in your wedding dress? Or what was going on there? How long?

Karen 6:15
Yeah, actually. So I said, No, no, obvious symptoms, but I had lost weight. And so that was just very convenient. Yeah, it was nice. And then for my wedding, I had lost, I lost weight. But I lived my husband and I lived in Rwanda, the year, that year prior. And so I just chalked up the weight loss to like a different diet and living in, you know, Africa. And I had a couple infections like an eye infection, I had, like, come back a few times when we were in Rwanda, but again, I just, like, chalked it up to like different, you know, I don't know, different bacterias and viruses and a different country. And so I didn't, I never suspected, you know, diabetes, I guess I got back. And it had been two months. And I hadn't put weight back on. So maybe I should have maybe that should have been a red flag to me. But

Scott Benner 7:13
we had a reason. Otherwise, right? Like, it's all you need is like one thing to go, oh, yeah, it's probably that. And then you can kind of let it go.

Karen 7:21
Yeah, and my husband's a doctor. And so like, I remember also, I had some numbness in my toes. And I told them that, but it was he was like, Well, you know, take a hot shower and see if that helps and stuff. But we just didn't we never thought critically enough. You know about these little things. Yeah. And then I just I went to the doctor because my knees hurt when I run. And I wanted a physical therapy referral. And my doctor knew that I wanted to get pregnant. So she was like, Well, do you want to reduce blood test just to have kind of your baseline records? Your baseline is on record, because when you get pregnant things can get out of whack. So it was like, Sure, I guess. I mean, we could have just as easily not done it. And then we did it. And then she called me back that afternoon and was like, Whoa, I need you to come back in right now. I don't know if like this is a mistake or what but my blood sugar I think was 448. And my, my Quincy was 13.2 was diagnosed

Scott Benner 8:21
Wow, you had had it for a while. So you know, for people who listen to the show a lot. They heard you say Rwanda and they thought, oh God, we're never going to get into her story because Scott's going to ask why she was in Rwanda, which I am going to ask so can we we do that first? Did you have to go all the way to, to Rwanda to find a doctor to marry or what are you doing?

Karen 8:40
Now, um, I met my husband before Rwanda and, and I, I'm a journalism professor, and we and I wanted to apply for a Fulbright fellowship. And so I when I met my now husband, you know, I told them, I'm gonna I'm gonna apply for these Fulbright's when we just started dating, I was like, Hey, you should apply to and we looked and there were some medical ones available to in Rwanda. And so we both applied to be Fulbright Scholars independently, like we didn't tell them we were dating or anything. And we both got it. So we both went. And we're Fulbright scholars in Rwanda together for a year, which was just like, awesome. It was set we were so lucky to both both get that that opportunity and then the same country so we're both teaching and researching in Rwanda for a year.

Scott Benner 9:35
That's crazy. Hey, for the remainder of the podcast I'm gonna refer to your husband is Dr. warm shower just so you know. That's what he got out of medical school. It's hilarious. Okay, so you're home now from Rwanda, you're having these problems. You end up with the doctor, you know, because you wanted to, you wanted a physical therapy appointment. That's an odd route to it. Have you come back to her office? That heart right? You said, Yeah. And yeah. How does it go from there?

Karen 10:07
And then she finger picks me again. And it's still super high. And she said, you know, you have diabetes. And I, you know, like, I think probably most Americans might not and not my knowledge, diabetes at the time was, you know, next to nothing. And so I was like, what else? Could it be like? What else could high blood sugar be? You know, what are some other things? Like me? Yeah. Nothing means you have diabetes. I was I think I was really just in disbelief. And. And she called, we called my husband and, and it was kind of like, do you want to come, you know, over here, like, for this talk, and I was kind of like, oh, I don't I don't think that's necessary. Like, I definitely was in shock and didn't understand the the gravity gravity of what this meant. And, and but yeah, so she, you know, taught me how to prick my finger and how to give an insulin shot and sent me home with you know, prescriptions to stop and get insulin and and get a CGM she sent me home with what's the one that's not Dexcom Libra. Yeah, she sent me home with a FreeStyle Libre. So I had that for the first couple months. And yeah, I mean, I was just really surprised and then just started, like digging into try to learn as much as I could about diabetes. And then of course, had an appointment shortly after with an endo. And so when we got when she first diagnosed me, she didn't know for sure if I was type one, or type two or 1.5 kind of situation. But then it was. Then my endo said I was a type one. Although I've recently changed endocrinologist, because I moved and my new endo was like maybe Euro, Lada. And maybe we'll test for that, but not until after a lot of this having babies stuff is over. But anyway, I was diagnosed with type one. And then yeah, thankfully, my endocrinologist was wonderful. And mean, he spent three hours with me that first appointment. And even every appointment after that was, I don't know, an hour and a half or something. I hear a lot of people complain about their, their diabetes team. And I was really lucky to have excellent doctors and educators and stuff. But still, it just shocks me how little information you get, even, even when I had several hours. There's just so much to know, and so much to learn. I mean, I think when people are diagnosed, they automatically need to be enrolled in a class, you know, where I don't know, we just spend the next six months or something learning about diabetes and how to manage it, because there's just and I understand why they can't tell you everything in that first appointment. It would just be overwhelming. But there's so much to know,

Scott Benner 13:21
I was really shocked that you said that she just gave you like a script for insolence and needles and sent you home. That was I just expected. You know, I talked to so many people who are getting children diagnosed and then they go to the hospital after that. And the hospital brings their blood sugar down slowly and helps them understand everything. And I would have mentioned earlier but I was imagining your husband rooting around the house looking for the receipt for you to see if you were still in warranty or not. So

Karen 13:52
I know I was like, Oh my God. Yeah, it was like when we said in sickness and in health. I don't think you were gonna you thought this was gonna happen so soon.

Scott Benner 14:01
I was just trying to be positive. I didn't know it was gonna be next week. Yeah, yeah, no, no, I yeah, that's, that's fascinating. I can I take a slight detour there. Did you have the wherewithal to think about that, like, how long did you had you two been together prior to your marriage?

Karen 14:17
Um, we had been together? What, like two and a half years? I mean, not. Not terribly long time. And but no, I mean, there was no, there was no question. He definitely didn't want to leave me because of my diagnosis. But I was lucky that that he is a doctor because he, you know, understood it. And it was also just an incredible resource for me to you know, I was asking him 100 questions a day in the beginning about it. And he's been, I mean, just a saint with handling it all. And so I've been very, very lucky and in the doctor diagnosing and she was was fantastic. And she, you know, explained as much as she could to me, I don't know why they didn't send me the hospital, I guess because I felt fine. I wasn't in decay or anything. And she set me up to like, first just give like four units a day and for a couple of days, then up to six and up into eight, you know, until it leveled out. And so she, I mean, she told me how to how to slowly bring my blood sugar down. And she also knows my husband, and he's a doctor. So I feel like I definitely had, you know, people who knew what was going on and, and I knew what, what to do as much as I could at that point. But yeah, I have I have wondered, like, how do you decide when to send somebody to the hospital or not when they're being diagnosed? If they're not in DKA,

Scott Benner 15:47
you may find it interesting to know that when I speak to people who have a medical background, they feel that doctors assume they know what they're doing. So I did wonder about that. Did she know your husband was a doctor and maybe she just thought like, ah, Dr. warm shower will take care of it. That'll be it. You know, like that kind of thing.

Karen 16:05
She knew my husband, but she was she I mean, she was great at explaining things to me and getting me in with an endo as soon as she could. And, but I have definitely had that in their appointments with with diabetes appointments, or just or the baby related appointments and stuff that the doctors when my husband's there and they know he's a doctor, they definitely talk at a higher level. And sometimes I have to be like, Okay, bring that back down for me. I'm not a doctor

Scott Benner 16:34
journalism major over here. Yeah. I didn't study the bigger words. Well, that's okay. So how long did it take you? Or maybe I'm speaking for you? You don't? But how long did it take you to feel comfortable? Like you knew what you were doing?

Karen 16:51
Um, good question. I mean, I think pretty quick, I guess relatively, I mean, I got my so my agency was 13.2. And I was diagnosed. And then the next time it was taken, which I think was three months later, it was 6.5. So I came down right away. And I, I mean, at first I was on the shots. And it's funny, when I was first diagnosed, my instinct was, Oh, I hope I don't need an insulin pump like that just, I just associate an insulin pump with like, I don't know, being sick. And I don't want this device hooked to me. And so and then as I learned more about what it was about type one diabetes, then it became clear, like, Oh, I definitely want an insulin pump. And I'm so lucky to be able to have an insulin pump. And so I got that maybe three months or less after I was diagnosed. So I had the CGM from the get go. Although in a couple months, I switched to Dexcom. And then I had the pump just a couple of months after being diagnosed and, and I'm on Omni pod and that, I mean that those both helped a lot. I really liked the flexibility of being on the pump, being able to, you know, not have to plan ahead. Like if I don't know that I want to have dessert, I'm not going to have to give an extra shot. If I decide I want to have dessert later. Like it's just easier to put it into the pump. So I mean, I guess within by the time I got all the gear like I felt, I felt pretty comfortable.

Scott Benner 18:35
I mean, you're able to see came down remarkably. And then you upgraded your gear, are you interested? Or do you even know about the Omnipod? Five was just announced the other day that for the algorithm?

Karen 18:50
So yeah, I am aware. But um, I so my, my endocrinologist actually recommends that I not go to the automatic system. Well, I'm trying to have a baby because my control is better than he thinks it would be on automated system because they have to. And he didn't know about the Omni pod. But the the other companies Yeah, you had to set or you could not adjust. I think you had to set your goal blood sugar at 100. I think and so, you know, if you were sitting at then it would give you give you sugar, or you know, it would want you to go back up. Right. And so he was saying that, you know, he actually thought that my control is better without that and because you didn't know about Omnipod but figured it would be that same standard of 100. So I mean, do you do you know

Scott Benner 19:51
that no. So it is Ollie pods of 110. If I'm not mistaken, I think control like us like 112 and a half which is I must, I don't know, it's an odd number. But yeah, they're both in their first generation still. So I think that was what they could safely and kind of quickly get through the FDA as a target. But you're right. If you're doing better than that on your own. You're gonna want your agency lower while you're trying to get pregnant for sure.

Karen 20:17
Yeah, and I definitely want to go to the automated system when, you know, I don't know, maybe when they come out with the next one, and you can have a lower range or something, because I do think, of course, that would help with like eliminating the nighttime alarms and stuff like that. But yeah, but right now, that's my doctor didn't recommend that. And it makes makes good sense to me. Because yeah, if I'm sitting at I don't want to go up. Yeah,

Scott Benner 20:42
no, I mean, now that you said, it makes sense to me as well. So you guys, I mean, I'm assuming like, You're not listening. You're not old, Karen. But you're at that spot where you were kind of like, I guess, if we're gonna have kids, maybe we ought to do it, right. How long do you try before you think like, I'm getting tired of having sex, and we're not pregnant yet? Like, like we? I mean, did that happen? Were you just like, Oh, my God, we're gonna have to do it again? Or, what's the length of time before you start wondering what's up?

Karen 21:12
I think for like your average couple, I think they want you to try for at least a year before you start looking into it. But for us, because I knew I was going to be a high risk pregnancy because of the diabetes. And because of my age, I think six months was enough for them to say, okay, we can start doing some tests. And so yeah, I think it was. I'm trying to think of the timeline, though, it might have been, it might have been a year, or a little less than a year before we actually got all the testing. And then, you know, then they said that we had a very low, like, less than 1% chance of conceiving naturally. And they recommended IVF, which was another big shock to us. And so then we will took some time to decide if we wanted to do that or not. And then we decided to. And so that's why I thought it would be helpful to come on and talk about like, how to manage your diabetes when you're going through IVF because you're taking all these shots and being pumped with hormones, and it affects your your insulin needs and everything.

Scott Benner 22:28
Why definitely. Yeah, but wait, since I'm sorry, something

Karen 22:32
well, now now. And we can still talk about that. Now. I feel like I'm remembering not as much as I hoped. I'd remember for that conversation, because of all what's happened since then. So since then, I did two rounds of IVF. And then we had our first embryo transferred, they call it like implanted, and it worked, and I got pregnant. And then I was five months pregnant, and we lost the baby just

Scott Benner 23:04
okay, sorry. Sorry, I didn't know. And now I'm thinking of every stupid thing I've said over the last few minutes, and I'm getting

Karen 23:11
no, no, no, it's all good. There was just less than two weeks ago. So it's still very raw. But um, yeah, we lost the baby due to genetic abnormalities, which was really shocking, because we did as part of the IVF process we had our embryos genetically tested, which should check which checks for genetic abnormalities, and we, you know, only transferred the embryo that was genetically normal. So we thought we had ruled that out, we knew that I you know, because of having diabetes, I was at higher risk of other pregnancy issues like preeclampsia and that kind of stuff. But that was the one thing we thought, okay, well, we're in the clear for at least we don't have to worry about, you know, genetic abnormalities, and then and then that's what happened. So it turned out we were just in like the one to 2%, who had the false positive originally, and, and so we just lost the baby. And so that is another thing that affects your, your blood sugar. And so I feel, in my mind, it's much fresher now to talk about diabetes management during the first trimester of pregnancy and into the second trimester and then with pregnancy loss. But also, of course, go back and talk about the IVF process to

Scott Benner 24:47
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I would like to do whatever you're comfortable with actually I'm sitting here I'm I'm shocked that you didn't just cancel this I thought about

Karen 29:23
it this is I have been like off work and this has been the first time that I need to be like on you know since since and so I was a little I thought about canceling it but um I don't know. I mean, I didn't want to like have to wait another, you know, months and months and I just thought I mean maybe there are other people out there who you know have lost a pregnancy and would benefit from hearing about like blood sugar perspective of it all. So

Scott Benner 29:57
that is very kind of you I really applaud Shit that very much. So we'll just tread lightly. And we'll talk about what you're comfortable with. But yeah, I mean, I'm so sorry, because I feel like you're gonna walk all through this, but you know, so you, they fertilize an egg outside of you, obviously. And then they they say that there's eggs that are ready to be implanted. You put it in? And how, like, how many times did you have to try that implantation process? Was it just once?

Karen 30:30
Yeah, so, um, yes, it was the first time we we had done that. So we got lucky it worked on our first time. So they they retrieved the eggs. So which is a surgery, which is another thing where I was like, giving the anesthesiologist my phone to look at my eggs calm the whole time, because that was the first time I am. Actually that was one anyway. So you do the egg retrieval, they retrieve the eggs, and then they mix it with the sperm in the lab. And then the embryos grow for five days, and then they freeze them. And then they biopsy them to check for the genetic problems. And then and at each step of the process, you you lose eggs and embryos. So it's like maybe you get a dozen eggs, when you're there retrieved. And then you know, only half of them fertilized, and then only 10 70% of them grow properly in the lab for the five days, and then only 40% of them come back genetically normal. So by the time we got to the end of the process, we had just one supposedly genetically normal embryo, which is the one we implanted. And we did another egg retrieval. And from that, in the end, we ended up with two supposedly, genetically normal embryos. So we still have two that are frozen, and we'll try to transfer those, you know, in a few months when it's safe to do so. But um, so, yeah, so but we had only had the one embryo transfer and, and there was about a 60% chance that it would result in a pregnancy and so it did so we thought Yeah, IVF can be really awful for a lot of people so we thought that like okay, we we've had a pretty good go IVF you know, we did two rounds and then we got pregnant in our first try. And so we thought like, you know, worked out okay for us.

Scott Benner 32:47
Yeah, I'm gonna have to just ask a childless question. It's not going to leave my head when they fertilize the embryo you bring that sperm in fresh or do you have it prepackaged from another day? How does that

Karen 32:58
fresh is ideal if that's not possible, you can have the sample given earlier and then they freeze it but fresh is what they prefer. And actually is kind of a funny story because my husband had a surgery for heartburn he had surgery today days before my my egg retrieval, and then so he came home from the hospital. It's like a major operation. He came from the hospital the day before like the night before my egg retrieval. And then the next morning like at like 6am I had to get ready and go in and he had to give a sample then and so he was like totally you know, fresh home from the hospital after surgery and like that is the last thing you want to do get woken up at 6am and have to give a sample so it poor guy Yeah.

Scott Benner 33:59
I think it's not that exciting. I need you over here oh my gosh. They need it so fresh sample. Alright, I'm just going to ask because I I'll again I'll wonder surgery for heartburn was his what is

Karen 34:13
really, really bad heartburn. Like all the time and taking the highest doses of just over the counter meds and so yeah, it's called it's called like I'm not gonna remember the name of partial nip nip in fund optic what funded the location or something and I don't remember but anyway, it's a surgery I think they take part of your like esophagus and like or your stomach and tie it up around your esophagus to shrinkable to tighten, because your esophagus gets like opened up or loosen. So to tighten it so

Scott Benner 34:56
yeah, that's insane. I mean, honestly, the entire conversation. I mean, despite your outcome, you know, initially with your first try, all of this is just crazy. As far as medical technology goes, I mean, honestly, it's it's it's absolutely unreal. And you said, you said earlier, you're gonna try again. You're, you're up for it.

Karen 35:19
Yeah, I mean, not today. But I definitely I mean, we definitely, we want kids and like, you know, I'm not getting younger. And so yeah, we'll try it takes a couple of months for all of the like, hormones from pregnancy to normalize and for your uterus to shrink back down to close to its normal size. And so we have to wait, we have to wait a few months. But But yeah, I mean, we'll try again. And hopefully, I mean, there's no reason to believe that our remaining frozen embryos, you know, have any problems. We were just, I mean, we've thoroughly investigated all of this. And it turns out, like, I think it was just really bad luck. And we just fell into that small percentage who got a false positive,

Scott Benner 36:10
right? I'm gonna ask you about the diabetes stuff in just a second. But first, I just was wondering if you could maybe articulate a little bit. I'm assuming you've been on like a roller coaster of emotions, right? Like, you got married, you waited? Listen, you did. But you did what I tell my kids to do all the time. Like you waited until you were a real person and you understood yourself and you understood other people, and you found a really good match. You get married five seconds later, you have type one diabetes, you realize in short order, you're having trouble conceiving. I mean, are you okay? Like, it feels like, I'm saying, like, that's a lot for a person to go through in a short amount of time. And I'm wondering what the impact has been for you?

Karen 37:00
Yeah, I think, I think I am okay. I agree. It's been a lot. I mean, and I was totally healthy, you know, for the first 35 years of my life, and then all of a sudden diabetes, and then infertility and then losing this baby. It is a lot. I think that. So in, I've had like, a really kick ass life. You know, up until these recent problems, my life is still great, but I had a really great life. My mom died when I was 12 with cancer. And that was awful, of course. And that was like the one big tragedy of my life. And otherwise, I've had a really, really great life to the point where I almost felt like, I'm I did feel like, I feel like I'm due for something bad to happen, because everything's just been so great for many years now. And, and then, yeah, kind of got hit with these things. And, but I think to answer your question, I mean, I think I'm doing okay, I think mostly because I'm lucky to have resources, you know, like, I have great health insurance, and I have excellent doctors and I have excellent support system with friends and family. And, you know, I'm, like, proactive to try to make sure that I stay okay. So, you know, like, when the baby died, and now participating in a support group, you know, of other mothers who have had similar situations, and I've, like, when I got died, but diagnosis, diabetes, I got a therapist, just to like, I was okay, but just to like, be proactive, because I didn't want to have that diagnosis result, you know, anything. You know, bad. So, I think that I've been, okay, coping because of, yeah, those positive things in my life, like a good support system. And in good doctors, yes,

Scott Benner 39:08
solid insurance, even just, you know, things that you can count on, whether they're people or institutions. Those things can leave you not feeling completely alone when stuff like this happens.

Karen 39:21
Yeah. And having lived in Rwanda the year before all this, and we hasn't, and I definitely think a lot like, if we lived in Rwanda, like if we, you know, grew up in Rwanda, we wouldn't have you know, how things would be different, wouldn't have all of these resources and it would be totally different. So I'm grateful to have all that

Scott Benner 39:44
Yeah, that should that trip must have packed out a lifetime's worth of perspective into you. You know, yeah, just seeing just seeing people live differently in a different part of the of the world. Okay, so, I mean, what part do you want to go through? Like, you know, how did management change at conception? Or through IVF? Where do you want to start?

Karen 40:08
Um, I guess let's start with IVF. Although I have to admit, now, I don't remember many details, I should have taken notes. But what I do remember is, so when you do IVF, you take daily, multiple daily shots, where you're giving yourself hormones to make you grow a lot of eggs, and those drugs make you those hormones, cause insulin resistance. So and you do that for about two weeks, and like 10 days to two weeks before they do the egg retrieval. And so as that, that two weeks happens, you become more resistant to insulin. So I definitely had to, had to like up my amount and then you know, after they retrieve the eggs, then be prepared for that to drop back down. So that's what I remember during that part. And I remember when I had the surgeries for the egg retrievals I yeah, like I asked that you used to intercede theologist to watch my phone the whole time. And but it was no problem, my blood sugar stayed stable through that, and then getting pregnant. So So I was pregnant for 20 weeks, and it's definitely you know, roller coaster, your needs are changing, could be weekly. So I think it's just a lot of monitoring and adjusting. I felt like usually, you know, when you're not pregnant, my endocrinologist want me to kind of see a trend for maybe several days or a week before I would make an adjustment because of it when you're pregnant. My new endo says you know, if you see a trend for two days, then make an adjustment because things just changed so fast. But, and then something interesting I learned when you're pregnant during kind of an earlier part of your pregnancy, like toward the end of the first trimester. You need less insulin and and I read in the there's a book pregnancy type one diabetes, and they said that your body starts making its own insulin again a little bit, which doesn't make any sense to me, because how could these beta cells die and then come back alive? So I don't know I haven't. I haven't fact checked this. But I mean, my endocrinologist also says, said that, yeah, you your body starts making a little bit of insulin on its own, which is kind of it's very cool on one hand, but it's also just messes with your your management because you're giving insulin and then your body's giving some to then it's

Scott Benner 43:00
a honeymoon almost where you just you can't be sure if your needs are really what they are. Did you find it actually happened that way?

Karen 43:08
Well, I didn't find it to be so so clear as maybe I had read about it being for other people, but my insulin needs definitely went down. I didn't notice it was like a specific sharp decline. I don't know but I my insulin needs definitely went went down. And then I know you know, as your pregnancy continues, like in the second half of pregnancy, you'd become insulin resistant and need much more. I hadn't gotten to that point yet. For me, my insulin needs had gone mostly just down although I should be more specific. My Basal needs went down. My Bolus needs went up and I'm a little odd with my I require very little basil and then a lot of Bolus so I was only I only have like about six units of basil a day but then have like a right now like a one to six insulin to carb ratio. Wow. So yeah, that's why my new endo was like maybe your a lot of maybe we should test for that.

Scott Benner 44:16
You're getting like point two five an hour through your pump.

Karen 44:19
Yeah, I mean, I have a couple different settings throughout the day. But yeah, from like, point two to point three. Yeah, roughly point two five. Exactly.

Scott Benner 44:28
Do you be willing to share your weight with me? Just yeah, yeah.

Karen 44:31
Of course that's fluctuated a lot in the last couple months of pregnancy, but yesterday, I was 129 129

Scott Benner 44:39
Wow. My daughter weighs up about what you weigh. And her Basal knees are like 1.1 an hour. And yeah, and her hurt. Her carb ratio is like one to four and a half. So that's really something Wow, no kidding. Um, So when you when you introduce the, I mean, it seems clear when you introduce hormones no matter what, whether it was during IVF, or your body doing it during the baby growing needs, fluctuated. How far do they fluctuate with the IVF? Like, what did they go from to when you started doing the injections?

Karen 45:22
Um, I wish I now I don't remember, but my best guess would be I mean, not a huge maybe like 15% more. Okay, and insulin and I needed

Scott Benner 45:37
basil went up about that much. Yeah. Okay. And then did you your current ratio change at all?

Karen 45:44
Um, I don't remember for the IVF. It did for pregnancy. So I was at a one, one to eight. And then I went to one to seven. And then I went to one to six.

Scott Benner 45:57
Did you find the IVF to be personally tumultuous? Like people talk about, like, with your relationship? Did you find yourself feeling like all over the place when they were introducing hormones and things like that?

Karen 46:11
Um, I felt like it wasn't as bad for me, as I had read about. I remember when we are trying to decide whether to do it. I read one study that showed that women who do IVF have just as much like stress and anxiety as women, cancer patients. And I was like, Whoa, that's heavy. But um, no, it wasn't, it wasn't as bad for me. Maybe that's because that was when after COVID started, so I was working from home, maybe it was less stressful having you have to go in every other day for ultrasounds and blood work. And that's, you know, just demanding just on a schedule. You know, if you're working, and you have to leave work every other day to go to the doctor, and you have to give shots multiple times a day. And, and so maybe it was a little easier that I was at home, my husband was also at home, and he was giving me the shots, which helped. And also I have diabetes. So I've given myself shots before. And so that wasn't you know, as big of a shock, as I think it is for a lot of people. And then as far as just emotionally. I did. Like, after about a week of being on the hormones. I did feel more emotional. Yeah. But it was kind of short lived. And it wasn't. It wasn't anything super dramatic. For me. I know it is for a lot of other people. But I actually thought that that part of it wasn't as bad as I was imagining. It could be,

Scott Benner 47:46
you know, or you weren't kidding, your life was going well, I just realized you were like in your local newspaper and things like that. And yeah, things were, well, listen, I listen, I can tell you something. I've never gone through what you've gone through. But I have been alive about 15 years longer than you. And it comes back around again, is like the best thing I can say is it just like no matter where you are, it doesn't last, the great stuff doesn't last and the bad stuff doesn't last, it's all sort of about moving forward. And you seem to have that attitude, like I've been trying to figure out for the last 40 minutes. Like your personality. And, and I'm getting I think I'm starting to get to it. Like at first I was confused because I didn't realize that you were you were here and all this had happened. And you were probably nervous and upset while you were talking. But you've loosened up over the last 10 minutes since you told me about the baby. And, and but you're very matter of fact, like you must work well in journalism is what I keep thinking. If that makes sense.

Karen 48:54
Yeah, I think you're right. I mean, I, I would describe myself as being very, like, open and direct and very, like, logical and, yeah, analytical and stuff.

Scott Benner 49:07
So is that the part of you that you're using to move forward with all this? Like, I mean, trying again, seems like a big step. But to you, it just seems like an obvious step. Because you went through all this. You still have the eggs, and you still want to have a baby. Right?

Karen 49:20
Yeah, I mean, to me, it seems like Yes. Obvious. You're right. I mean, I just, I mean, this is this has been, you know, devastating, but I don't, I don't see how waiting would you know longer than what is medically advised. I don't see a waiting and longer would be helpful. If anything, it would just be harmful because I'd be older and you know, the older you are, the more risks you have with pregnancy. And so, and I mean, ideally we'd like to have two kids. We are completely realistic and under understand with two frozen eggs and They're 60 60% chance of working, but we might not get two kids, we might get one kid. But, you know, I definitely want to want to keep trying. And I think I'm generally an optimistic person. So

Scott Benner 50:15
you seem like, Listen, if you want to I have a kid about to go to college, if you want the whole experience, I could I ship, you could pay for the school and do all the stuff. And sure, it'd be wonderful. I know, I'm looking forward to it. And she has diabetes. So you guys could talk forever, you could share insulin pump supplies, it would really be terrific. Let me get her over there. I'm gonna get her on a train right now. But But seriously, though, I just think it's kind of crazy. Like, not crazy. It's nice, because I never heard you say, you know, when we thought about not doing it again, or we're going to give up or we're not going to try like that was. I think that's brave. And it sounds like it's rooted in a lot of strength, in my opinion. So thank you. Yeah, but you've also now you're, you know, as you're relaying your story, you've been through some things. I mean, living through your mother's passing at a young age is, you know, I mean, it's obviously impactful. But it also builds, you know, what I mean? Like some people go through hard stuff, and you come out the other side a little better prepared to deal with the next difficult thing. That's really a it's kind of wonderful. In a sad, the sad but but very human way. I am enjoying your story. So how long do you have to wait? Is it the, I mean, this just would you say this just happened two weeks ago?

Karen 51:37
Yeah, less than two weeks ago. Um, well, the IVF, doctors said that they recommend waiting six months before trying again, but they said, you know, that's not a strict rule. And we can just revisit that conversation with the doctor and a few months, they said, it definitely takes a few months for, like I said, the hormones to stabilize and the uterus to shrink. So I mean, definitely two or three months, and then after that, we can have another conversation about it and see, if everybody would feel comfortable doing it. You know, sooner than six months, I imagine we'll do an ultrasound and see if my uterus is the right size. And so we'll just see how it goes. But hopefully, you know, in about six months or so,

Scott Benner 52:24
how did this impact your husband? The the loss of the baby, did he handle it differently than you did?

Karen 52:30
Um, he handled, I would say we've handled it. Similarly, which I'm thankful for, because I know that, that pregnancy loss can definitely, you know, impact couples in a negative way. So far, I feel like we've really been a team. He took, he took a week off work, which I was really grateful for, because, you know, I think a lot of men especially feel like, pressured to keep going. And, but all of the people we talked to who had been had had similar experiences, gave the advice of, you know, making sure that we took time and a lot of people said, I wish I would have taken more time or men that didn't take time said they wish they would have and so I'm glad that he did and it was really nice that we had then a week together at home to be able to like properly grieve, you know, we had our we had wanted to have the sex be a surprise, but after we found out that we were losing the baby, we looked and he was a boy and we're able to like get him cremated and just make like, read some books about loss and do things together that I think helped us both heal. So yeah, I mean, I know grief hits everybody differently, but actually feel like we've been pretty similar. One difference is that I was more like sitting on the couch that week. And he he he copes more by staying a little busier just around the house, like cleaning or doing home projects is more helpful to him than just sitting there. So that was one difference. But like overall, we've been pretty similar.

Scott Benner 54:33
Will you were you working through this? Or

Karen 54:38
um, I mean, I was I when you know, we found out that we are going to lose the baby I am you know, I asked for a week but but it's a little messy because I I am teaching a class right now. And frankly, it would be a lot more stressful and more work. For me, it will try to like hand over my class and prepare content for someone else to manage my class than for me to just do it. So I've continued teaching my class and then I'm the I have administrative responsibilities. And so those I've mostly handed off and then I do research and that I've just had to put on pause. So it's been a bit of a mix. Would you

Scott Benner 55:23
mind if we took a huge U turn here in our conversation? Sure. Okay. Is your opinion, obviously, are we are we screwed the way we're getting our media now, like that, that, that there's not some like grizzled person who's not really making a ton of money, who nobody knows who they are, who spends four months writing an article that we read, and it's well researched? And, and, I mean, we're in a world now where everybody like, right, like, your, your money comes from clicks. So your banner headlines are more important. It almost doesn't matter sometimes what the article says. It just seems like it's, I don't know, I just, I'm old enough to remember being delivered, but felt like the news. And now I feel like I'm being delivered. Like, I don't know, the report from my team. You know what I mean? And I was wondering what you thought about that, and if young people coming up in journalism, aren't even aware of where it used to be.

Karen 56:30
I mean, I think you're not alone in feeling the way that you feel about it. In journalism, I have a lot of problems right now. You know, just going back to losing its business, its advertising business model when the internet really came about, and then, you know, a major lack in public trust. And, you know, this whole fake news and extreme partisanship, and it's, it's no joke, these are serious problems. And it's, it's a hard time. But I am asked to talk optimistic, and there is, there's really good journalism out there. I think the bad thing is, it's harder to find, and you have to be intentional about finding it. And I think, you know, big issue is, is media literacy. So I think we should do a better job about teaching people, you know, how to analyze and interpret news stories, and where to look for good news stories. So I actually do research on more socially responsible ways to report the news. So there are some there are some forms of news reporting called like constructive journalism, or solutions journalism, where we, it's still, you know, rigorous, like black based reporting, but where you kind of don't just focus on the problem, you take an extra step to look at, well, who is doing what about this problem? Who, how are people responding to this problem, and then focusing on that, you know, to to make people feel more empowered, and to have better effects on news audiences, because a lot of the news that people read today just makes them feel hopeless and depressed. And so I think there is really good journalism out there. But yeah, it's harder. You have to be kind of have to know where to look. And you have to be smart thinker. To figure it out. Hard,

Scott Benner 58:42
it also seems like the people who still do it with any kind of, you know, ion quality, have had to go to subscription models and work for themselves, basically. And then that puts me in a situation as a consumer to say, Look, I can't give, I can't give every journalist in the world $15 A week that I need to hear from like, some conglomeration needs to come together, identify those people pull them together in one place, like I can give that person money. You don't I mean, I can get and they can pay them. And I also see why those journalists might not want to do that. Because with a smaller audience, I think they're making more money than they ever have really working within institutions. So they might be doing great work, but I don't know how to, like, I don't know how to collate it, like, how do I find it and put it all in one place? So I can see like, I can't spend my whole day. You know what I mean? Like, I think that ends up being the bigger issue is that there is something there was something special about knowing that, like, you're going to crack open the New York Times, and it's going to it's going to be the New York Times, and now, it may not be and maybe no newspaper is really and then you think well, okay, well a TV channel could do it. But then they start falling into camps of like, well, we'll lean one way or the other and then you know, it. Eventually it just becomes about sir Giving you news that you want not the news that exists. And I don't know, it just seems like when I talk to younger people about it, they have no concept for it because they've they've kind of grown up in this place where their phone has fed them exactly what they're interested in. And they don't they don't even think about looking at things that they disagree with. It seems to me Yeah.

Karen 1:00:21
And they're definitely not willing to pay for news, which I understand. I mean, why would we expect people to pay when they can get news for free? And also when they read the news, and it makes them feel terrible? Like, why would we expect people to want to pay for that product? And so it is hard, but I know, you know, there's a lot of people experimenting with a lot of different business models in journalism. And that's still, you know, still something that needs to be worked out is how, how we can do it effectively and still make enough money to do it effectively.

Scott Benner 1:00:54
Yeah, it's funny, as I'm saying this, I'm realizing, I mean, honestly, that's my business model those who like I have a, you know, I make a living, feeding diabetes content to people who are interested in it, but it just seems, it seems different to me, because I'm not, it's not like there's some other perspective on diabetes. That's the way the other side thinks about it. And I'm not I don't know.

Karen 1:01:20
I mean, there's definitely like, what you what you have that's different is basically advocating tighter management. I mean, I think, I think there is kind of an other side, like endocrinologist to go by basic guidelines of, you know, keep your blood sugar between 70 and one ad, where, if you or I see one ad, we, you know, think of that as being high and aim for a better target than what a lot of the kind of guidelines recommend. So I think in one way, you do you do have a unique?

Scott Benner 1:01:58
Well, I have to say, that would be a hell of a podcast. I don't know how you keep that going very long. Just wherever your blood sugar lands is fine. Don't worry about it. You'll be okay. Are you want? Let's, let's dance in the rain. Yeah, I don't know where you'd go with that. But I take your point. I mean, I guess I have picked a perspective that probably prior to me talking about it, there were only a few people who, who would jump out in public and say, I think you should be working harder to keep your blood sugar lower and stable. Most of those people, I mean, even people who think that often or are scared to say it out loud. It just seemed obvious to me when I started doing it. Like, like, why would why how? I always thought like, how would it be that I know how to do this. And I wouldn't share it with other people. That just seems ridiculous. But

Karen 1:02:47
anyway, thing that always seemed interesting to me is, you know, when you're pregnant, they have stricter standards for your blood sugar and want you to stay between 65 and 140, at least 70% of the time. And the goal is to have a resting blood sugar between 65 and 95. And the goal is to not be over 122 hours after your meals. That last one was always hard for me. But um, but I always thought it's interesting. Like, why is this the standard only when we're pregnant? We should care and invest in our health and our bodies, not just when we're also caring for the baby inside of us, but for ourselves, too, you know?

Scott Benner 1:03:29
Yeah, Jenny. And I laugh about that sometimes that I mean, not laugh, but we're like, how is it that we say the same thing as a why is it more important that you're healthy when you're pregnant? And the rest of the time? So yeah, whatever. But But I think if you dig down deep into it, the part of me believes that. I mean, you said it earlier, like there's not a lot of like a lot of information for people, most people aren't going to have that information. So you're gonna, you'd be immediately setting them up for failure, which could have them backslide, or just tumble out of concern at all, and just let it go. Like maybe if you give them something that's reasonable for most people to achieve. Maybe the idea is, then most people can feel like they're being successful. And we'll keep more people in a healthier range. Instead of fewer people in a tighter range, and everybody else just gets thrown away. I just happen to believe that that doesn't have to be the case. I think everyone can hear the information and then achieve their own level of success. Like we don't have to. We don't have to paint with such a wide brush. You know what I mean? There's no reason why you can't feed the information to people in a way where you take one thing out of it and your blood sugar doesn't go over 120 and another person takes something else out of it and their blood sugar doesn't go over 140 and etc. And why can't everybody have their own level of success instead of you know, saying that this is success and this is failure and you either fall into it or you don't? I don't know.

Karen 1:04:55
That's what I think there needs to be classes like when it when someone's diagnosed, they're automatically be enrolled in these classes, because you need to be given all that information. And it is it's too much to be given in one appointment when you're diagnosed, but there's so much to learn. I mean, I've been learning for two and a half years, and I feel like, you know, there's still so much to learn. And now I just can't believe that things I didn't know, when I was diagnosed. Right, you know, just little things like, like, fiber, you know, like the impact of the different types of things you eat, and how that, how that should cause you to adjust how you're giving me insulin, like stuff like that is so important. And, you know, like, when, when I got diagnosed, the what they told me was, when your food is hot, take your shot. So like, you know, take your insulin right at the time you start and you start eating. And, you know, I know, some people are told to always Pre-Bolus, like 15 minutes before they eat. But, I mean, it just massively depends on what you're eating. And I do eat foods that are have a lot of that are more slowly digesting. And so I often, you know, would, it would not be good for me to Pre-Bolus. And so, and during pregnancy, your digestion slows. And so I find needed to extend a lot more. And, like that kind of stuff is really crucial to know, and you just, you don't get that when you're first diagnosed.

Scott Benner 1:06:29
Certainly don't be that's I listen, I bang that drum as loud as I can. And I do think this format is as successful, as I've seen so far delivering that information, because like you said, there is so much you can't get all at once. So it's nice to just sort of pop in once in a while, listen, absorb something, go put it into practice, come back at something else. I do think that's I mean, the way people learn is, you know, of paramount importance when you're trying to set something like this up. So I don't know, I know, if you put me in a class, I would leave with nothing. I just know how my brain works. Anyway. Karen, is there anything we haven't talked about that you wish we would have?

Karen 1:07:14
Um, well, I hope we didn't just get too wrapped up in, in my story and didn't talk about diabetes manager enough.

Scott Benner 1:07:27
Here's what I got from that. More homework, more hormones, more insulin, right, quick, quick changes, nothing, you can't be waiting 234 or five days to make a decision you saw you saw needs increase, and you had to increase with them quickly. Those needs also could have gone away just as quickly, especially with the IVF shots, right? Like it was there and then it wasn't.

Karen 1:07:50
And with losing the baby, that's something you talked about. But as soon as the placenta is out of you, you can expect your insulin needs to drop, like up to 20%. And I saw that happen.

Scott Benner 1:08:04
Well, I'll tell people here too, that there is a pregnancy episode inside of the diabetes Pro Tip series. That's me and Jenny Smith talking about all this stuff. And I also have a series called, oh my gosh, what's it called? Am I gonna forget? It might be she's having a baby, where we we followed the same person talk to her at the end of her first trimester, second, third, and then a few months postpartum and had four different conversations along the way. Which I hear from other women has been helpful for them. I am me too. Yeah. Was it? Oh, I'm glad I am. I don't want to say I'm sorry. But I am. I am. I don't know you well enough to say this. I don't think but I am. So sorry for everything you've gone through. I'm grateful that you talked about it here today. I, I listened. Let's not make any promises. But if you want to come back on like a year from now, and tell me how it's going. I'd love to hear back from you again.

Karen 1:09:07
Yeah, I love that. Hopefully, it'll be great to be back on with more positive news, for sure. Certainly would

Scott Benner 1:09:15
be. Yeah, I'd be up for that. So I'm not saying keep me in the loop or you don't have to send me like a, like an announcement or anything like that. But, but an email would be wonderful. And then we could get something together afterwards. Okay, thank you very much for doing this. I really do appreciate it. Would you hold on one second for having

Karen 1:09:33
me. Oh, my pleasure.

Scott Benner 1:09:41
Well, first, I really want to thank Karen for coming on the show and persisting despite her situation. I also want to thank Ian pen from Medtronic diabetes and remind you to go to in pen today.com to learn more and get started. Don't forget to go to touched by Type one.org and find them on Facebook and Instagram. And of course to get your free benefits check from us med you can call 888-721-1514 or go to us med.com forward slash Juicebox.

Podcast if you go to juicebox podcast.com Go to the top of the page and click on diabetes pro tip. Actually, let me tell you about the whole top of the page episode list. diabetes pro tip the Omni pod five Pro Tip series a list of best endocrinologist that juicebox Doc's dot com there is a link to the free private Facebook group and a one cm blood glucose calculator. The blog, the signs of type one diabetes, a merch store, hardens diagnosis story and more at all the top of the page just click on it takes you right to it. You can also scroll down a little bit and find links for Pandora, Android, iPhone, Spotify, Amazon Music places where you can click right on the link and open up your app. And you can subscribe to the podcast and listen. There's lists of sponsors on this page. When I say like click on the links at juicebox podcast.com. It's there. And also a few of the series within the podcast you'll find right on the face of juicebox podcast.com. But back to the top of the page where you click on diabetes protip.com takes you to a sub page where I've put players for all of the almost all of them getting to it all let's just say all of the all of the series within the podcast 44 episodes of defining diabetes. There's a player right on the page like I'm on another computer right now watch this I'll just click on something. In this episode of defining diabetes, Jenny Smith and I are going to define honeymooning. See that is that odd and unpredictable time I will pause Hold on a second. I got it sorry. So the defining diabetes series there all 44 episodes in an online player, scroll down a little bit bold beginning series and then the variable series diabetes pro tip links to the sponsors again, after dark series mental wellness episodes asks gotten Jenny 18 episodes of that and running algorithm pumping interested in Omnipod five control IQ or loop we have episodes about that. I think we even have one about that one from Medtronic. Defining thyroid series right a lot of you have thyroid issues. Here is thyroid disease explained. It's all at juicebox podcast.com.