​Aaron Trimble (00:00)
CF affects every area of your life. It's not just a lung disease. and certainly for men, infertility is, is, is one, and frankly, it's a big one.

men I think are afraid to talk about it. and I will bring it up and say, hey, know, have you thought about being a dad? Have you thought about parenthood?

Casey Bruce (00:18)
I was saying things like, well, I would feel guilty leaving you as a single mom. you know, and she was saying, well, you know, I know what this picture looks like realistically, and it's still something I would want to go forward with.

Chad Bautch (00:33)
You're listening to Bold Enough to Ask, a BreatheStrong CF podcast that tackles questions for people with cystic fibrosis. BreatheStrong CF empowers the cystic fibrosis community to thrive, not just survive. I am your host, Chad Bautch, a dad living and thriving with CF and an advocate for the CF community. This first season of Bold Enough to Ask is gonna focus on the questions men with CF have around sexual and reproductive health.

Chad Bautch (01:01)
Today we have Casey a 46 year old patient.

living in Olympia, Washington with his wife and their four year old daughter Ivy Bee. He's a graduate of Evergreen State College and his professional life has been primarily working with children and people with disabilities. He's also owned

book store, which is really cool. We also have Bradley Johns with us. Brad is a 54 year old CF patient. He's married to his wife, Jana, and they have three kids.

Josh, 25, and then twin 19 year olds, Justin and Elizabeth. Brad is a math teacher and he's been teaching high school math and college mathematics for the past 32 years. Brad has a master's in mathematical education and a doctorate in educational leadership. thank you for joining us. Welcome to our podcast.

Brad Johns (01:49)
Glad to be here.

Casey Bruce (01:49)
around

us.

Chad Bautch (01:51)
So today's episode is gonna be talking a lot about what it's like to be a parent with CF, being a dad, essentially. So Casey, I wanna start with you. Tell me a little bit about your journey to fatherhood. Specifically, I would love for you to answer the question, did you always wanna be a dad?

Casey Bruce (02:09)
⁓ I would say, yeah, for the most part, I did always have the desire to be a dad. ⁓ I grew up working with kids a lot. That's been a lot of my professional life. ⁓ yeah, so that was always there. ⁓ But around my mid-20s was when CF started to be more serious for me, more severe. ⁓

that desire to be a dad definitely fell by the wayside as I had to focus on myself more. And then also feelings of guilt for what would that mean? ⁓ Shackling my partner with raising a kid on her own or feelings regarding that. Partly, I just kind of didn't want to go there. Just dealing with the mortality. ⁓

Then, thanks to new treatments that have come along in recent years, I was able to sort of tap back into that. And now I'm very pleased to say my wife and I have a four-year-old.

Chad Bautch (03:22)
Yeah, that's great. So our last episode, we talked a lot about IVF and the actual process for getting pregnant with CF. Tell me, did you know you were always going to be struggling with that process or when did you learn that?

Casey Bruce (03:34)
Yeah, I actually learned that I grew up not knowing that. And I learned that when I was 18 and I was transitioning from the children's CF clinic that I had been going to to the adult one and just talking with the nurse I was working with on that process, she kind of casually mentioned it in conversation. it was almost, it was like an aside, just like, by the way, did you know you're infertile? And I've kind of

I was, you know, I was sort of taken aback by that. ⁓ it's not like she's, she brought it up in a rude way. It was just sort of like, she assumed I knew and I didn't, and you know, and then it's not like we were able to really spend much time really getting into it or talking about it at that moment because we were working with on other stuff. But yeah, that definitely did throw me for a loop a little bit just because that had always seemed like a natural

Chad Bautch (04:12)
Yeah.

Yeah.

Casey Bruce (04:31)
way to go. And yeah, when it became clear that like, if I were to do that, it would be a lot more involved. You know, and so I did, you know, at some point in early adulthood, talk with the folks at the CF clinic about what exactly would all be involved in that. And I learned about IVF, I learned about different options. And at that point, it was also a lot less successful than it has been, I think more recently.

So yeah, that all gave me a lot to think about.

Chad Bautch (05:03)
Yeah, that's good. I can only imagine how that conversation would have been like, let's review your meds. Oh, by the way, you can't have kids. All right, well, the doctor would be right in. So yeah, I totally can see how that would happen. That's crazy. Brad, you have a very unique situation, kind of growing up in Mississippi where you and your wife are living. Tell us a little bit about your path to fatherhood.

Casey Bruce (05:14)
Pretty much. Pretty much, yeah.

Brad Johns (05:29)
Sure, so I guess probably when I learned that I couldn't have kids, I was probably early teenage years. And so, I don't know, a lot of times, for me anyways, like when somebody tells me I can't do something, that's immediately the thing I want to do, right? A lot of people are like that. And so I just created more of a desire to...

to try to do that. While I was in high school, I started helping with coaching tee ball, four and five year olds. We did that for a couple of summers. So I was around kids already and then knew that later that would be something I would want to pursue as far as a career, something to do with kids.

was pretty good at math when I was in high school, so just thought I'd be a math teacher. And so the more I got into doing, becoming a teacher and all that, it really created a desire to have children. And so when I met my wife, that was the only thing she ever wanted to do. She only ever wanted to be a mother.

She really wanted to be a homemaker and have kids and I had to immediately tell her, I can't give you that. And so that was kind of an interesting time there. Right after we got married though, I will say that we were approached by my wife's doctor.

And she told her that there were some new techniques that were coming out at the time that she thought would help us ⁓ have kids. so she was like, yes, sign me up. Let's go see whoever we need to go see. And so ⁓ we started down that process. And probably in less than a year, I say we were pregnant with our child. So, and actually he was the first...

Chad Bautch (07:29)
Wow.

Brad Johns (07:34)
⁓ first baby where the father had CF ⁓ in Mississippi for the couple to go through IVF to have that to happen. So nobody at that point had done that before here. Yeah, so.

Chad Bautch (07:50)
Wow. Setting records

all over the place. Well, at least all over Mississippi.

Brad Johns (07:55)
Yeah, well, ⁓

and then I guess about five years later, we tried it again and it worked again. And so now we have twins as well.

Chad Bautch (08:03)
That's fantastic, that's fantastic.

So let's start with that conversation for a minute. So for both of you, this goes to both of you. What was the conversation like when you decided kids is something we both Just talk about that conversation with your wife that you had to have and specifically like what prompted you, how much research did you do? Did your wife get genetic testing done beforehand?

Talk to us about what that process was like leading up to the IVF. We don't have to talk about the IVF. We talked about that a lot on our last episode, but just talk about the decisions that were made between the decision of wanting to, yes, we want to do this, to now.

Brad Johns (08:44)
So for myself.

The whole process started, but they wanted to just make sure that we were not, that I was not able to father a child naturally. So they made us go through the process of seeing the doctor for that. And sure enough, we got the diagnosis that that wasn't possible. ⁓ And I guess when we were together, she went with me for that doctor visit. That one was a pretty hard doctor visit, honestly. ⁓

I

knew it, for someone to actually just say, okay, you're absolutely no way not having kids this way, that was pretty tough. And ⁓ so.

Once we crossed that bridge, then the next thing that we did was to go ahead and get her DNA tested just to make sure she was not a carrier of any type. They did a cheek, like a rub in the, yeah, swab in the mouth and sent it off.

Chad Bautch (09:47)
yeah.

Brad Johns (09:51)
think about a month later, we got the results that everything was good, no problems there. And so then we went to the next part, I guess, where we went through the sperm extraction. ⁓ And then she immediately started her treatments to get prepared to undergo the process.

Chad Bautch (10:10)
Gotcha. And Casey, how did you bring that conversation, or how did that conversation come up between you and your wife ⁓ that now was the time to start planning?

Casey Bruce (10:20)
Yeah, well, Brad, it was interesting what you said about how you said your wife always wanted to be a mom, you know, etc. My wife felt that way very much too, so when we met, because also we met when I was in my late 30s and she was in her like, you know, mid to late 20s. And so that was very much a normal time for her to start, you know, start a family. And yeah, she really did have to kind of, I think,

ask herself, do I want this serious relationship with this person if it means maybe not having kids or that process being a lot more difficult than I had planned on, you know? ⁓ And I'm very glad she decided yes, it is worth all that, obviously. yeah,

Chad Bautch (11:13)
When you guys decided that now was the time to start this process, what types of did you have? You mentioned it a little bit earlier, Casey, to be honest. You talked about the fear of leaving your wife as a single mom, all that stuff. So what were those conversations like as you started planning to have this family?

Casey Bruce (11:19)
Yeah, thank

Yeah. So yeah, we started talking more about that actually during a period where I was having a lot of health issues. There were a few years where I was just, it felt like I was in and out of the hospital, you know, every, every couple months. And it was actually during that process that my wife brought it up. ⁓ And it was a difficult conversation to have because

I was saying,

things like, well, I would feel guilty leaving you as a single mom. And, you know, and she was saying, well, you know, I, I, I know what this picture looks like realistically, and it's still something I would want to go forward

and, know, whether it's whatever route we would take to have a kid together, she would, she would really love and value that it was

our kid she was raising, if it meant raising them solo. And that was a lot to think about. And for both of us, clearly it was a lot. I'm sure she had to do a lot of thinking before even bringing that up. And that was really something I went back and forth on. I completely understood.

Chad Bautch (12:29)
Yeah.

Casey Bruce (12:48)
all where she was coming from, but it still wasn't easy to think about actually starting that process, you know? ⁓ And it sort of just so happened that while we were thinking and talking about that, that's when, you know,

Chad Bautch (12:50)
Yeah.

Yeah.

Casey Bruce (13:06)
there was some new treatments that became available that after I started on really ended up turning things around for me. But even before that, we were talking about like, well, would we want to use a sperm donor? Would we want to, you know, because I can remember asking a friend about the possibility of would he possibly be a sperm donor for us, you know, and that was, I can remember calling a friend while I was in the hospital and asking him that, you know what I mean? So that was during that difficult phase. But then after things really improved for me, health wise, thanks to new treatments that became available, then we really felt like, okay, let's do this, you know, like this, this feels like a good time now, you know, now. And that was really nice to just be able to feel safe and guilt free and not have to have all those difficult feelings and conversations, not that those wouldn't have been worth having, but boy was it nice to not have that hanging over our heads while beginning that process.

Chad Bautch (14:14)
And Casey,

yeah, you touched, means that to be honest, that's one of the biggest reasons why we wanted to do these podcasts because life is different now with CF than it was 10 years ago. And so these are the questions and these are the new pathways that CF parents and CF dads get to explore. So Brad, tell me, did you have that type of a conversation with your wife and what did that look like?

Brad Johns (14:36)
Yeah, so I can remember before we got married and before I even proposed, I went ahead and just laid it out there to her and I was just like, okay, I know this is what you want in your life. You want to be a mother. But ⁓ from what I understand, I don't think I can help fulfill that desire. so, ⁓ honestly, she was just like, Okay, so maybe we have a different path to follow than what I had thought. ⁓ But in the end, it turned out we didn't, which is even better. So yeah.

Chad Bautch (15:10)
Yeah.

That's great.

So fast forward, we all have kids now. ⁓ We all still do treatments. We all do all that stuff. What has been maybe one of the biggest ⁓ challenges that you have faced as a dad with cystic fibrosis that has maybe impacted the way your kids grow up or changed the way the kids grow up? Talk to me about any experiences that you might have where ⁓ you're managing your CF and managing fatherhood kind of intertwined.

Brad Johns (15:47)
Yeah, for me, you know, when they were young, the vest here had just become a popular thing. so ⁓ it was one of the old real bulky ones and it was really, really loud. And so ⁓ it was actually perfect to help.

Casey Bruce (16:07)
think we all remember.

Chad Bautch (16:08)
Yeah, it was huge.

Brad Johns (16:10)
help them go to sleep, like, because they needed noise for whatever reason. And I would do my treatments and they would be on their little bass- not bassinet - but the little thing, I don't know what you call it anyways, where they're just laying there ⁓ trying to sleep or whatever. And so, ⁓ and they would just go sound asleep because it was loud. absolutely.

Chad Bautch (16:15)
Yeah.

Love that, love using the vest as the white noise, that's fantastic.

So one of the best things that my CF did, so first of all, I think, and we'll talk more about this here in a minute, but having ⁓ a partner

who is on board is critical. So like, I remember going down to the hospital for all my hospitalizations and her piling up the kids in the car and bringing them down for dinner. Maybe we sit around and play cards in the hospital room or at the cafeteria. So having a spouse who's willing to help is critical. But I always treasured my time

like with my oldest son, when I would do, we'd put our little kids to bed and then he and I would go downstairs to where my treatment stuff was and we would just hang out and we'd watch The Office together.

You know, you can call me a bad parent for letting my 12 year old son watch The Office, but that's fine because we still have, you know, we'll make references all the time to Office pranks, jokes, lines, whatever it is. ⁓ Because it's just a shared memory we have together that honestly, I don't know that I would do if CF wasn't involved with it.

I love that we get to do that and it's been fun. So yeah, when we can introduce our CF to our kids and make it almost just a part of their life, I think it's critical. So what are some things that you guys have done to help normalize your treatments, your hospital stays with your kids? Casey?

Casey Bruce (18:01)
Yeah. Well, for me, I just because of the timing, like I was, you know, kind of speaking to, I really have been very fortunate to have a relatively, let's say a relatively non CF fatherhood for the most part. Only recently, month and a half ago or so I had my first hospitalization since becoming a dad and

that was and also my daughter's only four. So she's also just very much still becoming more aware of the world and how you know everything works. So she really didn't see me do treatments until well do you know there are treatments she didn't see me do until recently because I had to do them specifically because I was facing a really strong infection, you know?

For instance, She hadn't seen me do nebulizer treatments until recently. And she was, you know, she was a little, I mean, she was just kind of interested in it. You know, she was, she was curious, you know? ⁓ But yeah, she was, you know, so I kind of showed it to her and explained how it works and how, you you kind of breathe in here and then, you know, the steam kind of stuff comes out here and we have a cute picture of us, you know, sitting together with me using it.

Yeah. I mean, that I know that probably sounds kind of crazy that I literally didn't have to do a nebulizer in front of her until she was four. But, you know, like you said earlier, Chad, it's just a new it's a new day these days. So it's just it's things are just so different now. ⁓ But yeah, and that was, you know, like I said, this was the first hospitalization since she had been alive. And, ⁓ you know, I was in hospital for six days.

Chad Bautch (19:35)
Yeah. ⁓

Yep.

Casey Bruce (19:51)
And that was the longest we've been apart. You know, ⁓ so that was really difficult for both of us. We don't like being apart that long, it turns out. So, you know, ⁓ yeah, she would visit, you know, either my wife or my parents would bring her like every at least every other day during that time, and we would at least FaceTime every day. But, you know, it's not the same as being

Chad Bautch (19:55)
Mmm.

Casey Bruce (20:19)
at home and comfortable and you know, so yeah, you know, and the first time she visited the hospital, she was, I mean, she hadn't been in a hospital before, you know, other than when she was born, but she doesn't, I don't think she remembers that, you know. Yeah, right. So yeah, that was definitely, she was definitely, there were a lot of big feelings, a lot of, I mean, it's a full sensory experience to be in the hospital, you know? She kept asking like, what's that noise? And I realized,

Chad Bautch (20:33)
I know. Yeah.

Casey Bruce (20:48)
these are all little things that I have tuned out long ago. you know? and yeah, like "What's the noise?" "Well, I don't know. It's another, it's a machine in someone else's room." "Well, what's it doing?" I don't know. It's, it's monitoring their heart. I don't know. It's, it's, it's stuff that I can't worry about because I need to focus on myself is what I, you know, what I sort of wanted to say. But yeah. Um, but you know, that was a, anyway, that was all a new experience and

There were definitely a lot of feelings. One of her teachers at preschool said that during their circle time, Ivy Bee said like, "Hey guys, I need to tell you something. My dad is in the hospital." So, so it was definitely something that she, she understood the seriousness of it to an extent, to whatever extent someone her age is able to.

And there's been a lot of, you big feelings since then, too. Like I said, it was only about six weeks ago. But things have returned to normal and I'm thankful for that.

Chad Bautch (21:52)
And so Brad, you and I are similar in that we've had children a long time, way before new treatments came along, probably multiple hospitalizations and various other things. Tell me, What were some of the things that you and your kids did to help normalize your CF care?

Brad Johns (22:09)
Yeah, so while you were saying that, I'm remembering in my mind many, many times where we've had to do homework while I was in the hospital. They would come to the hospital to see me, and especially my oldest, ⁓ being a math teacher, he would have math homework and sometimes he would be struggling with that. And so we'd have to go over stuff while I was in the hospital. So, I mean, it's just, you do what you got to do, right?

Chad Bautch (22:37)
Yes.

Brad Johns (22:38)
So, you know, I try to put them before myself as much as I can in every way. so, because it's not just me that I'm trying to take care of anymore. we just.

Chad Bautch (22:48)
Yeah, and that's the balance, right? Because we do have

to take care of, our family as much as we can. But at the same time, we have to balance that because, I mean, 10, 15 years ago, we had to also make sure we were taking care of ourselves a lot. And that took a lot longer timeframe than it does nowadays. So you're right, that's always been the balance of prioritizing

Brad Johns (23:02)
Mm.

Yes.

Chad Bautch (23:11)
us over care for them and all that stuff. That's a good ⁓ example. So talk about specifically your medications. I remember my kids always asking me about my medications and I even have pictures when we

were younger of playing, maybe it was PlayStation 2, I'm older, so maybe it was Atari, who knows? And my son sitting next to me, and ⁓ he would have a unmedicated nebulizer in his mouth, just holding it, because I was doing that too. So tell me how have you guys ⁓ protected your kids from the medications, or even helped normalize even that aspect of it? Brad?

Brad Johns (23:57)
Yeah, so ⁓

being a teacher, I have to be at work really early. ⁓ And so my day typically starts at 4 a.m.

where I would do treatments to get all that taken care of first. And that would take me probably 45 minutes to an hour each day, especially back before newer treatments came out. So everybody was pretty much asleep in the morning time anyways when I was doing those. So they never really saw the biggest part of my treatments, because morning is when I chose to do the biggest majority of them.

But then like with stuff, Especially like when I'm taking pills and stuff,

I can remember when they were growing up, I'd be like, hey guys, you want to see a magic trick? Watch this. And I'd be like, see these pills? There's like five or six pills. Let me show you how, I'd say, Watch, watch me swallow it. When I just swallow real quick and they'd be like amazed and I do it again. It's okay, I got to take some more anyway. So I grab another handful and I swallow them again. So, but yeah, that kind of stuff. they would get a kick out of that

So, and when they have friends sleep over and stuff, they would be

Chad Bautch (25:07)
Yeah, that's.

Brad Johns (25:09)
like wow.

Chad Bautch (25:13)
That's a magic trick that we've all showed our kids, our kids' friends. I've never been able to do it without water, but I use a very minimal amount of water and it's always a fun trick. Casey, how do you incorporate Ivy Bee ⁓ or even just with perving forward, just protecting her from the curiosity of your medications?

Casey Bruce (25:38)
Yeah, well, you know, for the most part, the ones she's seen me do are just pills, you know, and so and I mean, she's she's so young that she knows that that's part of my morning routine that, you know, I need to I need to take my medicine. But and she'll comment on, you know, the different colors of them and stuff like that. But yeah, as far as but also like, well, for instance, ⁓ we have two dogs that are

getting older, they both take a fair amount of medication every day too. So that's kind of part of our morning routine is we'll wake up, I'll get her some breakfast, I'll take my medicine, I'll get that ready, I'll get the dog's medicine ready, and then I'll come over and sit down with her and we'll eat together. But...

Yeah, she's very accepting of like, daddy's gonna be in the kitchen for a little while. Getting whatever medicine and you know, whatever else he does in there ⁓ ready.

Chad Bautch (26:46)
Very cool, yeah. speaking of just keeping our kids involved as much or as little as we can, I remember when my son went over for his very first sleepover at another friend's house. And his mom called us up and told us a story about how when,

They were sitting there playing. I don't know what they were playing, but my son turned his friend and said, hey, when does your dad do his treatments? Just assuming that, well, my dad does treatments. I'm assuming all dads do treatments at this point. So, you know, we've always done as much as we can to help normalize it, but that's the kind of stuff that our kids get, you know? I think they understand things.

better than some other kids. Like our house always washing hands all the time. Right? Growing up, it was always making sure we're cleaning things up. And so I think that that has been very beneficial in my kid's life going forward. And so I just think that growing up with the parent with CF obviously has its disadvantages. There's those times in the hospital we miss out on, but I do think there's advantages too. I mean,  my son learned a lot about

life at an early age. He was a better communicator with adults growing up than he was with kids his own age. And honestly, I think the fact that he's had real life stuff happen to him and his dad has been in through that kind of process helps him mature and develop some more. So I do think there are obvious disadvantages, but I think the benefits are there if you can find them.

⁓ How do you talk to your children? Brad, I'd be really curious with you. Like, how did you bring up your CF when they were younger to try to help educate them?

Brad Johns (28:29)
I don't think there was ever just one conversation. I think it was just kind of the normal everyday life, seeing that you're doing your pill, you're taking the pills, you're doing the medicines. ⁓ And I think it wasn't until I probably had my first hospitalization where we really had to talk, you know, daddy's not doing well, he's feeling bad, running fever, that kind of thing. And we needed

make sure that he gets the care he needs. So he's gonna have to go be in the hospital for a couple days.

Chad Bautch (29:05)
That's just lots of little conversations basically around the different events. Casey, how about you? Have you talked to or have you and your wife talked about how that conversation might go when Ivy Bee's older?

Casey Bruce (29:19)
Not really. No, we haven't really. Like you were saying, Chad, with your expecting that all dads do treatments, kids just accept what's in front of them as the norm, and it is normal to them. I think it'll all just seem natural. It's all just, you know what you know. You know what experience you have, and that's how you view the world.

Um, this topic reminds me of, I can remember years ago, seeing an interview with Michael J Fox. Um, and it was around the time, I think he had a book that came out specifically talking about his Parkinson's, and how that, you know, how, that kind of affected his family. I just remember him saying something like, well, I mean, you know, no matter what, like your kids still think you're cool. And like,

I think that's true.

think whatever is going on, whether it's that you're in the hospital regularly or you have to do all these treatments or whatever, the important thing is if you're showing up for them and you're a good parent,

kids will think you're cool, to a point. I have a four-year-old, so she's still in the phase where she thinks I'm cool. You guys have teenagers and whatnot. I hear that doesn't last forever. I'm sure that in my case, it will. But with everyone else,

Chad Bautch (30:28)
Yeah, for sure.

Casey Bruce (30:43)
I've heard, but anyway,

Chad Bautch (30:43)
It made, it made it

comes back too. My 23 year old loves hanging out with me again now. So, whereas the twins have no desire to hang out with me right now and I'm weird. So yeah, that makes sense. Yeah, so for us, we've had to, we've had that conversation obviously. So in 2016, when I got my lung transplant.

specifically when I got listed for transplant, we had to have that conversation, particularly with my oldest son. was an eighth grader, maybe ninth, yeah, eighth grader at the time, I believe. And so we did have to sit down and have that conversation, what it might look like for transplant. And definitely had some miscommunications when we talked about like what the benefits of the transplant were. He literally thought that by getting a transplant, added one year of life to me. So when I went away and got my transplant,

he really started struggling because he thought, I only have a year left with my dad now. So thankfully we got that straightened out relatively quickly after he disclosed that. Kids internalize a lot of stuff. And so that's always been a little bit of a struggle ⁓ as a dad and having to try to incorporate that as they grow older and teaching them what CF does and how it impacts us.

As you'll learn and Brad as you probably know, it's a very easy topic for papers for our kids. They have a built-in expert and I literally think I have been quoted in all three of my kids, by all three of my kids in various papers through school. So ⁓ there are again, the minor benefits are out there if we're willing to really look for them. So I wanna talk now a little bit about our mental health because

First of all, being a parent of any kind nowadays is difficult. It has changed. We talk about our new treatments that have come around to help us extend life. Kids face way more stuff than we ever had to do as kids growing up. But our mental health around having to manage our own care, helping to look out for what's going on with them. What are some things that you guys have had to do?

Brad probably more so than Casey so far with a four year old, but Brad, to help manage your mental health, what are some things that you do to help ⁓ just kind of impress upon your kids how important it is that they're maintaining their own mental health well-being?

Brad Johns (33:12)
And so I will start by just saying, I think with my daughter especially, the whole going into the hospital thing, I think that had a bigger toll on her. She's had more issues with mental health

just because, I really think just because she saw me right before all the new treatments came out and she was old enough to see that I was getting sick and I was getting sick a whole lot more frequently and I was having to leave and be in the hospital. For myself, you know,

there's a point where you get to that you just, I've got to figure out something else to try because this isn't working very well. And so talking with my social worker and

we started having some sessions where I would just go and talk to them about making sure that I was in the right frame of mind and not getting to the point where I was getting depressed,

just depression taking me down into a dark hole. I wasn't that person growing up. I was always bright and bubbly and very outgoing. And ⁓ I wanted to continue to try to do that as much as possible.

Chad Bautch (34:34)
Yeah. It's just so important too, because I do think my daughter as well had the biggest impact on her growing up. And even now when I get sick, she's the one that's the most concerned. The boys are like, whatever. But she wears her emotions more on her sleeve and is generally more concerned about what happens.

Casey, all the fun stuff you get to look forward to as you get older and Ivy Bee gets older, but ⁓ have you had to do anything yet with helping her manage that, especially with your time in the hospital?

Casey Bruce (35:02)
Yeah, I mean, I, you know, an issue I have mental health wise that I bet a lot of us, have it, is anxiety. That's the main one. We pretty much all have medical trauma in our past and have anxiety and PTSD and whatnot as a result of that. And, you know, that can be really difficult. I mean, there's, our kids really test

our patience and our anxiety levels and all that stuff, you know? That comes with the territory. And I've had to remind myself, my wife has had to remind me also that, you know, the better I am at regulating my own anxiety, the better Ivy Bee is going to be at regulating her emotions when they get overwhelming, you know, and that can be a challenge. I mean, I'll...

I'll be honest, that's a real challenge, you know, still. And it's something I just keep trying to, be better at.

I mean, I was a stay at home parent for a while. So the person she's hanging out with the most, her main role model is having low level anxiety attacks occasionally. She's, you know, she's going to copy that behavior to an extent, you know, I mean, she's going to think, well, that's, know, that's how you react to things. That's normal. So that's been, you know, that's been an ongoing challenge for me.

Chad Bautch (36:22)
Being a parent is hard work. Being a parent with CF makes it even more difficult. So I really appreciate this, the fact that you're to share. Before we wrap up today, is there anything else, any other kind of moments of being a dad that you wanna make sure we talk about today?

Casey Bruce (36:36)
Only that like, it is absolutely and completely my favorite thing I've ever done. It's just, it's just the best. I mean, I didn't, I didn't know. knew, I knew I would, I had a good feeling I would enjoy it, but I had no idea how much.

Chad Bautch (36:52)
Agreed. Brad?

Brad Johns (36:53)
I'd say... Definitely

just It's hard work, but it's fulfilling work. It's my most important work, taking care of my family, making sure that they have what they need and just being able to live life with them. So it's good stuff.

Chad Bautch (37:10)
It's worth all the pain that we go through. I'm curious to speak of that, Casey. Any more children coming for you?

Casey Bruce (37:17)
We have talked about having one more. Since, like I said, we, so we used a sperm donor. We went that route and that is the route we would go if we wanted to have more. So, you know, one kind of nice thing about all the steps involved in us CF dads becoming dads is we really can plan for it. We're not going to have unexpected

you know, surprise pregnancies that can derail life. So we can really prep for it. And so that is kind of unique, you know, to be able to say like, well, yes, my wife and I have talked about having one more, not more than that. And you know, I mean, it's just most parents aren't in that position, right? You know? And so yeah, that is something we've talked about.

but we don't really want more than two, I think. ⁓ Although, well, with you guys, the IVF, I mean, Brad, you had twins, I'm sure that wasn't something you were expecting or planning for necessarily. So there can still be surprises.

Chad Bautch (38:24)
Brad, I assume you're done. but next for you, grandkids?

Brad Johns (38:29)
Yes, that would definitely be the next step. No more kids for us. Our oldest, he's 25. And so hopefully at some point he'll meet someone like I've met my wife and then he'll have kids of their own and we'll be grandparents.

Chad Bautch (38:33)
Yeah.

Yeah, that's the dream I've heard. So I'm very excited for that opportunity someday, maybe too ⁓ But yeah, we'll see how that works out. Things are not always in our control when it comes to the grandkids, right?

Casey Bruce (39:01)
The idea of ⁓ three men with CF talking about even the possibility of becoming grandparents, just like, let's appreciate that. You know what I mean?

Chad Bautch (39:12)
For sure, you're 100 % right. That's, you know, I was talking with Brad earlier and, you know, his parents were told, take him home and love him because he's not gonna be here very long, much past three or four years old. So the fact that we get to have that conversation about grandkids nowadays is amazing. So I agree, you're right. Appreciate whatever you can.

Brad Johns (39:13)
Absolutely.

⁓

Casey Bruce (39:30)
Totally.

Chad Bautch (39:32)
Next, I'd like to welcome Dr. Aaron Trimble, a pulmonologist affiliated with the Oregon Health and Science University, where he was the adult CF program director from January 2021 through November of 2023. He's a member of multiple working groups focused on sexual and reproductive health for people with CF,

and pays particular attention to men's health.

Chad Bautch (39:57)
Aaron why don't you go ahead and introduce yourself and tell us about your life and your history with cystic fibrosis.

Aaron Trimble (40:04)
Chad, thank you so much. I really appreciate it. And thank you for the invitation to be here. So I am a pulmonologist. I care for adults with CF. I'm absolutely passionate about that. That's the main thing I do when I wake up in the morning is think about caring for people with CF. I've been doing this for just over 10 years. I really got interested in caring for people with CF right at the beginning of my pulmonary training after I finished residency and started my fellowship ⁓ in Chapel Hill at the University of North Carolina.

And I really had an interest in doing research ⁓ and to help really advance the field. It was very meaningful for me to care for people with CF when I was in training. And I did some research in mucus clearance, but really later on kind of a series of events got me interested in reproductive health.

After my training, I moved back to the Northwest, which is where I'm originally from. I've been here for about seven and a half years and it's just been a real journey. Certainly there's been lot of changes in CF care with the new therapies. It's just been a real journey and a real joy. Thank you so much for having me.

Chad Bautch (41:02)
Yeah,

yeah, we love it. you know.

Questions that are we bold enough to ask is what we're talking about. And specifically we're talking about men's reproductive health. I really want to focus on what that looks like and being a father and how that affects people with CF. You've been involved with this aspect almost from the beginning. So I want to ask you just kind of a general question to kind of kick us off here. If I was a new patient in your clinic and I came in with my wife in tow and we said, we want to start looking at having kids,

Aaron Trimble (41:15)
Yeah.

Chad Bautch (41:34)
starting a family, what does that look like to you and how do you have that conversation with people?

Aaron Trimble (41:39)
Yeah, well, ⁓ first off, I would love for any new patient, anybody I'm meeting for the first time, any male specifically who is asking about that. But I'll also to be honest, it's actually pretty rare that that comes up. And more often than not, I will bring it up. But if you ask, what does that conversation look like? I'll often really try to feel out kind of what people's goals are, what are their thoughts, or say, Are you interested in having children.

And I'll also ask what they're familiar with. What do they know? What do they know their options are? Most men, I won't say all, already know that they are almost assuredly infertile. Now, if you Google it, you read about it, people say, oh, 90 plus, 95 % of men with CF are not naturally able to have children. And in medicine, we can never say something's 100 %...

but honestly male infertility and CF is as close to 100 % as you can get without saying 100%. And the few reported cases ⁓ where men have been able to naturally father children, their diagnosis of CF is extremely mild and if they were cared for by another provider, they might have said this isn't actually CF, this is something else. ⁓ So for anyone, we avoid the term "classic CF,"

Chad Bautch (42:56)
Wow. Wow.

Aaron Trimble (43:01)
it's an older term, but if you have severe CF or especially if you've got double delta, which about half of people with CF do, you can pretty much count on, not, not being able to naturally have children. So options are really important. ⁓ Many, but not all men know that it is possible to have your own biologic children, to

genetically with your partner, with a female partner, conceive. However, it is going to require sperm aspiration. It's going to require a procedure done usually by a urologist who will do, it's not surgery in the operating room, but usually an in-office procedure, but oftentimes it does need to be done in the operating room. But one or the other, they can do a small procedure to go into a testicle.

and remove some of the fluid in the testis which has sperm in it. That can then be used ⁓ for in vitro fertilization.

Chad Bautch (44:02)
How do you work with the gentleman and couple that really to get them from that first moment into your office to going into the urologist? How does that work?

Aaron Trimble (44:09)
Yeah.

Yeah.

Yeah,

Unfortunately, a lot of times things are really determined by insurance. These procedures are really expensive, so if people's insurance has a preferred provider, we'll place a referral and go about things that way. In the world of CF, there are starting to be some funding opportunities or some grants that are available. And so often those are tied with specific providers.

And those actually don't require a referral. We don't have to physically, you know, place a referral or talk to other doctors. But I think what you're, what something you raise is how do I, I think the way, if I recall correctly, you phrased it, is how do I prepare them? And I think there's a lot of conversations to be had there about, hey, this is, this is a big deal. Become a, Becoming a parent, it's exciting, but it's also really scary. You still have a diagnosis and most adults with CF, men and women, grew up kind of

Chad Bautch (44:53)
Yeah.

Aaron Trimble (45:09)
thinking they would be dead by the time they were 30. And so the whole notion of being a parent, you know, is something, you know, I don't have CF. I kind of grew up thinking I'd be a parent someday. And I am a parent. I have three boys of my own. But I didn't grow up kind of half expecting or anticipating that I wouldn't live past, you know, age 25, 30, 35. And so I think the there's sort of some psychological development or

process of thinking, being open to having children, that is a really tough thing for people like me who don't have CF to truly understand. And everyone is different. If I've learned anything in the more than 10 years of caring for people with CF, everyone's different. Yes, it's one disease, but no, it's not one story. Everyone has their own story and their own thoughts and approach and feelings. And of course, partner. ⁓

And I think what I, my guiding star in having these conversations is being genuinely curious as to who this person, who they are, what their thoughts are, where they're at, and what are their hopes, what are their fears. Some people have it kind of all planned out and they're like, I want this, this is how we're going to do this, we've identified this, here's our funding streams. And I'm like, great, do you need anything from me? I don't, I don't.

I don't think I can help you.

Chad Bautch (46:30)
Right.

Aaron Trimble (46:32)
men I think are afraid to talk about it. They're thinking about it. ⁓ It's embarrassing and it's awkward. ⁓ And I try to create space and I will bring it up and say, hey, know, if I'm meeting somebody for the first time, if they haven't brought it up to say, have you thought about being a dad? Have you thought about parenthood? ⁓

Or, are you in a relationship? Even if you're not in a relationship, have you thought about this in the someday? I see a lot of 18, 19, 20 year olds, they're not necessarily in relationships. They're often saying, well, maybe in five, maybe 10 years, I'll think about it. But ⁓ I really try to create space, even if that's not gonna be at that visit in the future to establish rapport, to establish relationships, to say, hey,

CF affects every area of your life. It's not just a lung disease. And I am a lung doctor, but I'm, but I am a CF doctor. And I want to create space to say every part of your life that CF touches, and certainly for men, infertility is, is, is one, and frankly, it's a big one.

That's fair game. And I want to be there for that, even if I'm not going to be the doctor who's directly treating or caring for that.

Chad Bautch (47:35)
Yeah.

Yeah, so that you brought up a couple of good points there. So ⁓ when you're talking with these, maybe a couple, maybe just the man at first, what are the pros and cons that you kind of bring up as to what's life like with kids and being, still having your diagnosis?

Aaron Trimble (47:51)
Yeah.

Yeah, so there are, I can say as a parent there are a few, the pros, the joy of being a parent is just massive. And that's also different from everyone. There's, everyone I think experiences parenthood a little differently. And the,

pros, if you will, of going through ART, specifically maybe what you had talked about in the last episode, there is some advantage there versus some other options, right? You can go to a sperm bank and a partner can be impregnated through intrauterine insemination. That doesn't always work. It can also be more expensive maybe than people realize. And there's often kind of this weird funny

thought that men carry with them. I know because I've talked to many you're like yeah I mean they're my kids I know they are but genetically, biologically, it feels weird to say you know some some other man's semen is and my partner like that just do you let yourself think that? Do you let yourself kind of what does that even mean? And but yet that pathway has absolutely created real true families for

for men with CF and people with CF. And so I don't want to undermine that at all. But an advantage of undergoing ART is that genetically, biologically, those are your children. Those are your offspring. Your genes are passed on. Another, and maybe you already talked about this but I do, really think it's really important when I talk to a man with CF about options and pros and cons.

is embryo adoption. Undergoing in vitro fertilization for any couple, don't have to have CF, often more embryos are developed through that process than are going to be ultimately transferred into the female partner. And they're kept frozen and can be discarded. Some people have ethical concerns about that and they're just sort of on ice and ⁓

those embryos can then be put up for adoption for other couples who want children, want to adopt, but allowing the female partner the option of having embryos transferred and going through a pregnancy. And there's a little equality there because those embryos that are adopted are neither genetically mom's or dads's They're as if those children were adopted from that couple that underwent in vitro fertilization.

but ⁓ it still allows the opportunity for pregnancy, to give birth, nursing, all of those really truly important bonding experiences for a female partner, but there's at least some degree of equality. And frankly, that's often a less expensive choice than either maybe even intrauterine insemination going through a sperm bank or certainly undergoing IVF. So that's one pro and con. I always wanna mention that people know what their options are.

If going through in vitro fertilization or ART seems really like I'd love to do that, but I just don't know how I'd ever pay for that. That's something that comes up. I mean, the cons are like almost always the cost. Insurance doesn't often cover this and it just seems really out of reach.

But I still have been deeply appreciative of organizations that are supporting reproductive health and are in some cases providing grants for couples involving a male with CF to undergo in vitro fertilization.

Chad Bautch (51:37)
And I wanna back up just a smidge too in this because I wanna talk a little bit about genetic testing when it comes to both the male with CF, which might seem odd, but there's definitely some things that could be uncovered. And then also obviously the wife or the spouse. And so what does that, how do we incorporate that into this conversation too?

Aaron Trimble (51:40)
Mm-hmm.

Yeah.

Yeah.

Yeah, that's

a great question. everyone going through in vitro fertilization, partners are going to be tested at some point for diseases, essentially carrier screening. Across the US, about 1 in 35 people are carriers for CF. So that female partner has a 1 in 35 odds, maybe higher, especially if she's

Irish descent or maybe lower depending on ethnicity. But 1 in 35 is a pretty safe number to assume. The male partner is going to pass on a CF gene that is going to happen. You got two copies, one of them is going to be passed on. If that female partner is a carrier, there's a 50-50 chance.

that that kid will have CF. So if you do the math, that's a one in 70. If you don't do any testing, there's a one in 70 chance that a child even undergoing in vitro fertilization will have CF. There's a couple of things that I think are worth mentioning there. One is there is an option to do pre-implantation genetic testing, PGT. So this is a step and part of the IVF

process. It's not always done, but it can be requested to be done in this case, especially if the female partner is found to be a carrier where they take one cell from the embryo, don't destroy the embryo, just take a cell ⁓ and test that embryo to see if that's an affected embryo. And then you can elect to only transfer, only implant embryos that are unaffected with CF.

Chad Bautch (53:45)
Yeah,

that's incredible.

Aaron Trimble (53:47)
But yeah, and that is something that we in the CF clinic can often help with is connecting people with genetic counselors. We often provide a fair bit of genetic counseling ourselves. At our center we have a genetic counselor who we work with and sees a lot of our couples.

Chad Bautch (54:02)
So how many adult men do you see that are also dads? Obviously, ballpark number.

Aaron Trimble (54:08)
Yeah, probably 25 maybe. ⁓

Chad Bautch (54:12)
And then

have you noticed anything different with their health? Like has being a dad caused extra stress on their CF stuff? Has it been less stress? We have the joy of parenting. How has that affected them?

Aaron Trimble (54:18)
Yeah.

Yeah.

That's a great question. And one that I ⁓ will maybe take a moment to shamelessly ⁓ promote a study that's called HOPE-CF that's being done. We're a participating site, but Dr. Tracy Kazmerski and her lab at the University of Pittsburgh is really looking at outcomes for people who become parents for the first time. Does it affect their health? And does it affect their mental health? What are all of the different aspects that parenthood

can touch because kids getting being little they're in preschool daycare bringing home all these germs these respiratory viruses, that can be really scary especially if I had like a lung transplant or something. I mean that can be really ⁓ really powerful really important. In my own personal experience, I think I see both. I think I see a lot of men who the the joy of parenthood,

the drive of living not just for yourself and not just for your partner, but also for a family can really help drive men to really invest in themselves and their health and to be the best version of themselves that they can be. I think of a patient who I saw in the last few weeks who's become a dad the second time ⁓ through in vitro fertilization and he was really tired.

And he's not sleeping a lot. And he's got two kids under the age of three. And ⁓ we talked about keeping up with treatments and keeping up with his care. And he's like, yeah, I don't know how I'm going to do that. And ⁓ it's a real, real balance. I think in some ways, think maybe his health has -- there is a bit of a trade off there, I think,

but it seems to be pretty small. That's why, you know, really excited to have a formal research study. It's been a lot of changes in the last few years. We have really effective treatments that have absolutely transformed the lives of many, but not all, people with CF. And I think that gives a lot of confidence and hope that, yeah, actually, maybe if I miss some treatments, I'm gonna still be okay. And I can...

have the strength and the energy to have some sleepless nights and support my partner and care for this child and balance caring for myself, caring with this disease, hoping for my future and also truly giving myself for my child, which is, you know, part of the, I can't think of another word other than sacred, but like the sacred part of being a parent.

Chad Bautch (56:56)
⁓ Well, Dr. Aaron, thank you so much for your time today. Lots of great information there for us to unpack as we try to explore what fatherhood looks like as we continue to develop better treatments, like you said, allow us to live longer and be better dads. So, super grateful for your time today. Thank you for joining us and continue the great work.

Aaron Trimble (57:17)
Well, thank you so much for having me. It's something I'm really passionate about and I really appreciate the opportunity to have this conversation and to ⁓ share some information. I really appreciate it and all the good work that you're doing.

As doctors, I always like to say I have a hard time calling myself an expert on a disease I've never lived with. So I really appreciate that there's some people with some lived experience, lived expertise

that are true leaders in the field. So thank you so much for your time as well.

Chad Bautch (57:44)
Thank you for tuning in to Bold Enough to Ask. You can learn more about BreatheStrong CF by visiting breathestrongcf.org.

Please subscribe on your preferred platform. Be sure to like and follow us and send us your questions to [email protected]. Special thanks to our episode producers, Georgia Brown and Katherine Russell. Branding and design by Rachel Rockhold.

​Mike Bramhall (00:00)
I've always known I wanted to be a dad at some point in my life.

And pretty much my whole life, I assume that was possible. I was at the time unaware of how extremely rare that really is.

John R. Kleven (00:11)
Is this whole struggle and this whole thing even worth it? I mean, it dug us down to validating, you know, should we even be married?

so, yeah, we had those conversations. Am I worth it? And obviously she validated I was...

Chad Bautch (00:28)
You're listening to Bold Enough to Ask, a BreatheStrong CF podcast that tackles sexual and reproductive health questions for people with cystic fibrosis. BreatheStrong CF empowers the cystic fibrosis community to thrive, not just survive. I am your host, Chad Bautch, a dad living and thriving with CF and an advocate for the CF community.

first season of Bold Enough to Ask is gonna focus on the questions men with CF have around sexual and reproductive health.

Infertility affects 98 % of men with cystic fibrosis. In our first episode, we're gonna unpack what it really means to navigate fertility testing, assisted reproduction, and the IVF journey or in vitro fertilization. Later in this episode, we're gonna talk with Dr. Sigrid Barrett, a researcher focused on reproductive health and quality of life for adolescents and adults with chronic illnesses.

But first we're gonna start with a conversation with three men that are also thriving with CF. First up on our panel, we have Dakodah Harrell. Dakodah has not gone through IVF, but has started having fertility conversations. Mike Bramhall and his wife Mariah have two kids, both born through IVF. Finally, we have John Kleven. He also has two kids, they are twin 13 year olds.

All three men are here to share their stories and talk about their experiences with reproductive health.

John R. Kleven (01:48)
Yeah, thanks.

Mike Bramhall (01:48)
Thanks for having me.

Dakodah Harrell (01:49)
hello.

Chad Bautch (01:51)
Well, let's start with some basic questions. I want to start with you, Dakodah. You are a gentleman who has explored the conversation, at least, about infertility and reproduction, but haven't gone through any processes. What are some questions or fears that you have about the process that you'd like to see us discuss here today?

Dakodah Harrell (02:10)
One is I have no idea what's envisioned in the process of IVF. John has explained some.

possibilities of how his experience went. But I have really nothing, no knowledge other than it's not easy.

Chad Bautch (02:29)
Mike, let's start with you. ⁓ You are, how old were you when you were diagnosed with CF?

Mike Bramhall (02:30)
Yeah.

I was diagnosed at four months old.

Chad Bautch (02:39)
four months old. So growing up a normal CF kid, assume.

Mike Bramhall (02:44)
I mean, I would say so, yeah, I had a pretty normal childhood.

Chad Bautch (02:47)
and lots of hospitalizations, no hospitalizations.

Mike Bramhall (02:49)
⁓

My first one wasn't actually until September 11th, 2001. ⁓ So third grade. And you know, they ramped up from there, but I played sports my whole life and was extremely active.

Chad Bautch (02:59)
Okay.

And so as you got older, ⁓ tell us how the topic of ⁓ having kids and fertility came up.

Mike Bramhall (03:13)
I mean, for me,

I've always known I wanted to be a dad at some point in my life. ⁓ My parents were always wildly supportive in everything I did. And I was always told by them that kids with, or not kids, but men with CF can have kids. And, you know, they had introduced me to some other adults in my teenage years that were men with CF that had had kids.

naturally. And so pretty much my whole life, I assume that was possible. So I guess when I met Mariah and we got talking about kids and what we were gonna, what our futures were potentially gonna look like, you know, I went into it explaining that I thought that I could have kids, you know, there's potential for some issues to come up, but I was at the time unaware of how extremely rare that really is.

And so honestly, we kind of both learned about it and experienced it together. Because I didn't tell her, hey, I can't have kids. And I wasn't told, hey, you can't have kids either. So we both kind of had to navigate that together.

John R. Kleven (04:02)
Okay.

Chad Bautch (04:14)
So sounds like your care team gave you the rough information. Yes, it's possible, but that's pretty much it. They didn't elaborate on what that looked like or anything else. Gotcha.

Mike Bramhall (04:20)
Yeah, that's correct.

I was never told, yes, you can have a kid or no, you can't have a kid. It was, there's potential for some issues that could come up, but yes, it is possible for men with CF to have kids naturally. It's about the extent of the education I got from that.

Chad Bautch (04:41)
And John, you are a little bit different, right?

John R. Kleven (04:42)
you

Chad Bautch (04:45)
you were trying to have kids with your wife Melissa naturally, wasn't happening, and then you went and did your sperm count and found out there were no sperm present. ⁓ At that point, you had not received your CF diagnosis yet, is that correct?

John R. Kleven (04:55)
Correct.

Chad Bautch (05:01)
So you tell us about, ⁓ just start a little bit with growing up, meeting your wife and then marriage and go from there.

John R. Kleven (05:09)
Yeah, so born in 1974, tests for the type of genetics that I have didn't exist for the one common strain that I have now with the new strain that I had been diagnosed with back when I was 37, didn't exist.

Mike Bramhall (05:26)
⁓

John R. Kleven (05:34)
for quite a long time. And so I suppose my childhood was kind of like Mike's, very active, lots of sports, no hospitalizations, but lots of ⁓ respiratory illnesses, sinus infections, upper respiratory pneumonias, walking pneumonias. I was diagnosed with chronic bronchitis and asthma, ⁓ lots of inhalers and those types of helps. And met my wife,

got married in 1998. We were married for about 10 years with no kids and were definitely trying. And so that process kind of led to fertility clinics through our local hospital here.

I had to do a sperm count test and that came back zero three times and they're like, something's wrong. They...

They throw it all out there. like, it could be cancer. could be a lot of other things.

so they wanted to do, part of it, like so Dakodah, what you and I were talking about a while ago, ⁓ part of that is finding out what's inside.

of your testicles is basically what it is. They want to find out what's in there. And they're like, well, you might have cancer in there and that might be why you're not having it. How they describe what they needed to do didn't sound very appealing to me. So I did not rush into that exploratory procedure that they wanted to do. I said, I think I'm going to ignore this until my wife...

was like, hey, it's your health, it's our life together, so let's get you through that.

There was a point in time where the doctor had some students with them and they all had to check out to see if I had vas deferens. There was like five of them. Now you check, now you see, I'm standing there. I don't even remember that word from health class, so whatever you're not feeling there, I'm, you know, the education piece wasn't there as far as what they're feeling for or what the process was.

Dakodah Harrell (07:45)
Okay.

John R. Kleven (07:58)
It wasn't until they sent us down to their main hospital and ⁓ they said, we need to find out if either of you are carriers of cystic fibrosis. And through that, they're like, you have it. You have it. And I was kind of like, well, how do you spell it? What is it? What does it mean?

Mike Bramhall (08:02)
you

Dakodah Harrell (08:16)
Thank

Chad Bautch (08:18)
Which, yeah, that's amazing.

Right.

Dakodah Harrell (08:26)
Thank you.

John R. Kleven (08:27)
And they were kind of like, you have cystic fibrosis, but we're going to help you have kids. let's, the focus was pushed towards, towards fertility. ⁓ And then kind of like, you got to figure that out. There wasn't really any follow-up or anything like that. You know, give us a call if you want to get it checked out further.

Chad Bautch (08:34)
So.

What, I'm curious, what type of doctor, so it wasn't a pulmonologist obviously, but what doctor diagnosed you with CF?

John R. Kleven (08:55)
So it was through the fertility side urology.

Chad Bautch (09:01)
So a urologist who has no specialized training in CF or any respiratory illness tells you that you have this respiratory disease and we know you do because the genetic testing and by the way, the reason you're not having kids is because you don't have a vas deferens which is a telltale sign of CF. Yeah, that's ... And at that point then, you start focusing on the fertility.

John R. Kleven (09:19)
Right.

Chad Bautch (09:25)
and not at all on the CF.

John R. Kleven (09:25)
Right.

Correct. Yeah, I still went through what I felt was normal life of every, I don't know, four to six months having multiple ⁓ bouts with respiratory issues and sometimes up to three different antibiotics to kill whatever's in there and kind of feeling like I was always fighting for my life when I was sick, whereas my buddies were like, what's wrong with you? You're just weak. What's up?

And I'm kind of like, I'm sick. Like this is how I thought, don't you feel this way? And so it was kind of fighting through that. I ⁓ did some Google searches of CF and I was like, my gosh, that's what I have. I was like, well, there was no follow-up, so I must just live with this the way I've been living with it, which is antibiotics and inhalers and.

Chad Bautch (09:58)
Yeah.

That's incredible. Yeah.

John R. Kleven (10:23)
You know, and coughing, you know, I would, I was a teacher and so I would start, I would start class, start usually most classes with about a half hour coughing jag. And I'm like, literally I'm like, I'm fine. This is just how I, this is how I, yeah, yeah. This is just how I, yeah. Yeah. Yeah. I remember writing goals down, like figure out how to not clear my throat all the time.

Chad Bautch (10:36)
That's incredible.

Mike Bramhall (10:37)
I promise guys, I'm not dying.

Chad Bautch (10:39)
Yeah.

We've all had that conversation, right? When we're talking to somebody and we start coughing, no, it's all right. I'm used to this. Yeah.

John R. Kleven (10:51)
figure out how to not have these infections and stuff. I thought it was what I ate or what I did or who I was hanging out with. It just kept on happening. yeah, focus IVF. And then that's what it was, was like, how can you have kids? And I just kind of kept on caring for my life the way I would care for my life.

Chad Bautch (11:11)
Gotcha. So I'm curious. Yeah, absolutely.

Mike Bramhall (11:12)
Can I add something to John there?

John R. Kleven (11:14)
Yeah, go for it.

Mike Bramhall (11:15)
I

was just gonna say, mine is relatively similar as far as the process, just because similar to you, I went into this assuming I could have kids, or at least hopeful that I could have kids naturally. So the first thing my wife and I did was get genetic testing. Like once we got married, ⁓ not to get too TMI here, but like we just, we didn't do anything to prevent kids, right? So.

We were hopeful and it didn't happen. So at that point we did genetic testing because we obviously wanted to know if Mariah was a carrier or not, no matter how we went about having kids, right? ⁓ And she wasn't, thankfully. So then I had to do the same thing as John. I went and I had the sperm test done. That came back with zero, which again, I knew I had CF, so I didn't really panic and go down the cancer route like he was presented, ⁓ which is horrible in itself.

John R. Kleven (12:09)
Yeah.

Mike Bramhall (12:10)
But it was still, it was still a panic because you're told you don't ... there's nothing. And so I had no signs prior to that, that I would have no sperm. Right. So like, it was a, it was a shock and we never actually found out if I had sperm until the day that they did the, the retrieval for me as well as from my wife. Yeah.

Chad Bautch (12:33)
extraction. ⁓

John R. Kleven (12:36)
Woah.

Chad Bautch (12:37)
Alright, so John you're at the point now where in vitro is definitely your answer. Mike you're at the same place, in vitro is definitely gonna have to be the answer. Talk about just the the events leading up to the retrieval day.

after giving your wife shots to produce as many eggs as possible for several weeks, and so then you go in for retrieval day

John R. Kleven (13:02)
Yeah, the day of retrieval, So where we chose was in Gurney, Illinois. So from where we are, that's close to a five hour drive. So what you remember, Mike and Chad, was you kind of have to be there and ready. there's the super shot. And then there's all these different things you've got to do.

Mike Bramhall (13:17)
Mm-hmm.

John R. Kleven (13:24)
And so we would have to stay down in Gurney, I think sometimes up to 10 days. So I had to coordinate that with work and pay for hotels and pay for food and everything like that. And so it was an ordeal to do that. so we had two, ⁓ the first process was a failed process.

Chad Bautch (13:31)
wow.

John R. Kleven (13:50)
and they're just like right into it ok, next month we're gonna do it again and you're like we're still trying to recover from what we just lost and now we're not ready but here we go and so it was boom boom ⁓ very very quick I think for think for for guys what I realized quickly was it was more

I should be more concerned about my wife, what my wife was comfortable with for a clinic because there's lots of clinics out there and some are more sensitive than others and some are customer service oriented. We could have went to one that was an hour away, but my wife was like, noop. She did the interview for all of those and talked to the doctors and the nurses and everything and we ended up at the one in Gurney. And that was...

Mike Bramhall (14:26)
.

John R. Kleven (14:39)
That was the one she was most comfortable with. we're like, that's where we're going. And so it was like, and plus we were older too.

late 30s. So ⁓ With shared risk, there's a cutoff age that they don't want to do shared risk anymore. And for us, we were kind of, you know, going for broke with, with this at this stage of game with all the, you know, the cost

Chad Bautch (14:46)
Yeah.

so shared risk is when there's a, I don't want to say contract, but something similar to a contract between you and the fertility clinic where you get to pay down X amount of dollars and that guarantees usually three to five, three to six transfers essentially. And depending on the various clinics, I've heard of two different kinds. One where if after the last one there's no live birth,

then you get up to 80 % of your money back. And the other one that I heard about was up to, you got up to six tries and up to four, if you decide we're done, there's too much of an emotional burden or whatever it is, then you get up to 80 % of your money back at that point too. So shared risk is something that was not around when I did it. It was just pay for attempt. So John, you did get to have that shared risk program though.

John R. Kleven (15:55)
it's, you felt like you were gambling. You know, you're gambling with life and you're gambling with your marriage and relationship and kids and everything. But then you're talking about that large chunk of money and you're, you're like, good God, at the end of all this, what a, what a kick in the nuts to then, you know, I know I'm not only can't I have kids, but now I'm all out the money. And that, I like, we, we, that was very difficult pill for us to swallow.

Chad Bautch (16:15)
Yeah.

John R. Kleven (16:20)
because it was at the time, think it was 15 grand to the IVF clinic. But there was other costs associated with that. The package that they set up, know, like you say in the contract is like, here's your chance or here's your options. You could do this and, or you can sign up for this and you have this 80 % or 85 % payback. Ours was three tries.

Chad Bautch (16:41)
Yeah.

Nice. Okay. And Mike, you did not have shared risk. So you were paying per attempt. So tell us about your egg retrieval day and what that looked like for you.

Mike Bramhall (16:46)
No.

So I will preface this. I'm not like Dakodah. I don't want to scare you out of IVF from this. ⁓ I'll be blunt. I had a pretty rough, pretty rough go. So we showed up and all I knew is that we were going to be doing a sperm retrieval the same day as my wife's egg retrieval. And the only thing I knew about the process

was essentially they would get like a spring-loaded needle with, you know, hollow needle that would shoot into the testicle and essentially core out a segment that would be pulled out, taken down to the lab, and they can extract the sperm from.

think of ⁓ like, have you ever had a little sister go to like Claire's at the mall and get their ears pierced? The little handheld spring, it's the same thing pretty much, right? But it's also loud, so the doctor, 100%, they numb you, it doesn't hurt. So I'm a paramedic, like this is all happening post-transplant for me, so I'm going into this very hopeful that there's gonna be some anesthesia involved, because I just don't wanna be mentally.

Chad Bautch (17:47)
Yep, yep. The noise is worse than the pain.

John R. Kleven (17:53)
So.

Mike Bramhall (18:05)
awake or conscious. Nothing. They were told it is straight up not an option. So I'm already not thrilled. My wife got some, think, I don't know, Xanax they gave her something. I got nothing, which whatever. I had to drive. It was fine. So we get there. We do my retrieval first. Doctor does his thing. They pull it out. Right before that, they said, okay, do you guys want donor sperm or not?

John R. Kleven (18:06)
You didn't have any anesthesia?

Chad Bautch (18:07)
Yeah.

No, it's just a numbing agent.

John R. Kleven (18:13)
⁓

Chad Bautch (18:17)
Yeah.

Mike Bramhall (18:33)
because your options are A, they do this retrieval on Mike and there's sperm or B, they do it and there's not. And thank the Lord, we did, I had sperm. But if we didn't have sperm, we had to either say, nope, we're not gonna go through with this or we have a donor picked out prior so that there is sperm on site because it has to be done the exact same time the egg

is retrieved from my wife, which is same day.

Chad Bautch (19:04)
So Mike, I want to ask you more about that before we go on. Had you and your wife discussed that option prior to that day, donor sperm option? Gotcha.

Mike Bramhall (19:06)
Yep. Yep.

Yes, yes, we had.

⁓ And she's probably gonna be mad at me because I don't remember if we fully decided or not. I feel like we ended up saying yes to donor sperm just so that we could keep the process moving and at least have something on site while we could further discuss because this whole process, like you don't get to pick when retrievals happen. The doctors essentially can try their best to schedule it with the meds and all that, but.

Chad Bautch (19:20)
Gotcha.

Gotcha.

John R. Kleven (19:30)
Okay.

know.

Mike Bramhall (19:40)
You are completely at the will of your wife's body and when it's going to do its thing, like the day that the trigger happens, you have to be ready. You got to go. So I was not thrilled about the sperm or the donor sperm. Either way, we didn't have to use it. So we were fine. We ended up, what they did was they did the procedure. They took it straight down to the lab and within like three minutes, my wife's

Fertility doctor came up and just gave the thumbs up said hey, you're good, there's sperm. So we were great. I was super lucky ⁓ However, we did find out that the sperm was they called it very immature Which I guess is super common for males with CF without the vas deferens they just sperm just kind of hanging out down there and You know, they don't get to move around and do their thing and stretch their legs, I guess ⁓ So anyway, we did we did that one cycle

Dakodah Harrell (20:33)
Thank

Mike Bramhall (20:35)
Same day

as the egg retrieval, ended up getting three healthy embryos. ⁓ We have two daughters now and one embryo left, so we were extremely lucky that the very first transfer took. And we got Lainey, who's almost four. And then one embryo. We got three embryos. The first round we transferred one. Second round we transferred one. We got Marley, who's eight months. And then we have one embryo left. That we'll try.

Chad Bautch (20:53)
and you transferred one embryo at a time.

Mike Bramhall (21:05)
some point.

John R. Kleven (21:06)
That's cool.

Chad Bautch (21:07)
Gotcha. That's interesting.

Mike Bramhall (21:08)
Now,

Dakodah Harrell (21:09)
That's

Mike Bramhall (21:10)
the

Dakodah Harrell (21:10)
awesome.

Mike Bramhall (21:10)
fun part. That was the normal procedure, And John, I don't know if you said, but for me they said, all right, you can expect a little tenderness and some minor swelling. Keyword, minor swelling.

Dakodah Harrell (21:15)
Mm.

Mike Bramhall (21:31)
We were home within, I don't know, two hours at the most of the procedures being done. I was in one room at my desk and my wife was in bed rest on the other side of our home. And I remember yelling to my wife, like, something's not right. ⁓ There shouldn't have been something resembling a grapefruit or larger within two hours of that happening. So essentially I called the doctor and I was like, hey,

This isn't normal. ⁓ It's really big and it's really turning colors and it's like, it's not, I'm freaking out. ⁓ So they're like, okay, come to the ER. They said everything was fine. They did an ultrasound, nothing to be concerned about. They gave me some pain meds and ⁓ I don't think they did anything that first night.

However, I ended up going back because it was getting worse. So they decided to drain it bedside, just with a needle. It helped, but it didn't fix it. So I went home and basically over the next three months from when this happened, I went back to the doctor multiple times and was told anything from a weird reaction to the procedure to infection from like...

the procedure itself, mean, everything you can think of. And after three months, it was just getting ridiculously painful and worse and worse. And so I went back to the ER and I was like, we got to figure this out and something's not right. Long story short, it was internal bleeding in my scrotum for three months. ⁓ So I then had to have emergency surgery to put a drain tube and such for multiple weeks. And it was...

John R. Kleven (23:14)
Oof.

Mike Bramhall (23:27)
A lot, a lot, a lot, a lot. Now, looking back at it, had those complications not happened, it was a breeze. Like you said, the noise was way worse than the pain. Even though they didn't sedate me, they use lidocaine and other stuff. They do a shot up, actually up in your stomach. ⁓ But yeah, they do some that are like up near your pubic bone, slightly above.

Chad Bautch (23:46)
Yeah. ⁓ that's not where my shot went.

John R. Kleven (23:49)
Hahaha

Mike Bramhall (23:54)
and it'll actually do more of a nerve block down there. So I truly didn't feel anything, but it's still not a great, you know, thought to think about a little spring loaded needle gun going down there. So.

Chad Bautch (24:05)
Right. That's the

John R. Kleven (24:06)
Yeah, mine was,

think, so Dakodah I would say maybe see if they have a way to put you out. Well, mine, that's

Mike Bramhall (24:13)
I will say this, different clinics just have different rules. There are 1 million percent clinics

Dakodah Harrell (24:13)
You

Mike Bramhall (24:20)
that will offer anesthesia. You got to find the right ones, but it does cost more. Remember that too.

John R. Kleven (24:22)
I think for me,

with my urologist, I think because I had it done already, just to find out what's up, ⁓ I was kind of prepared. They put me out for that one. And they wheeled me out and I was treated like a patient and everything. it was about a week to recover. ⁓ Go back to work about a week. ⁓

Mike Bramhall (24:35)
Yeah.

John R. Kleven (24:49)
Swelling, yeah, not as much as you, Mike, but swelling definitely, lots of bags of peas, lots of a golden eye playing on the Nintendo 64. But then when we went down there for it, ours was done because they froze mine, actually. So they, when I went, yeah.

Mike Bramhall (25:03)
Mhm.

Chad Bautch (25:03)
Yeah.

Mike Bramhall (25:11)
They froze your sperm.

John R. Kleven (25:13)
And so when I went down, they said, no, you can't have any other clinic but us do the retrieval and then we'll freeze it. So we had to drive down to Gurney.

Also trying to figure out at the same time how are you going pay for this?

Mike Bramhall (25:27)
That's one

Chad Bautch (25:28)
Yeah.

Dakodah Harrell (25:28)
too.

Mike Bramhall (25:28)
of the hardest parts too. And just to touch on that, like Chad, you mentioned how much did you say it was when you went through it?

Chad Bautch (25:35)
I want to say it was between $10,000 and $12,000 per attempt. We got lucky on our very first fresh cycle, very first time around. We got our first born, Carter. But then we went through a frozen, a fresh, and a frozen with no success. And then finally our last, our fifth cycle of fresh.

Mike Bramhall (25:50)
Yeah.

Chad Bautch (25:55)
That's when we got our twins. And that's one of the reasons why I was curious about your implantation of only one embryo. The first time we did it, we put in three, got pregnant. Second one, we put in two, got zero. So then I basically said, third time a fresh stuff worked. Three was the lucky number. We're doing three again.

Mike Bramhall (26:06)
Yeah, I was going to touch on that too.

Suh.

So for

us, we only got three embryos. And so when we went through it around like 2019, 2020, it was 25 grand for one round of IVF. And that was to be paid out of pocket. For those of you unaware, vast majority of insurances do not cover any IVF. It's all out of pocket. And at least for our clinic, we had to pay it upfront. for each...

Chad Bautch (26:20)
Yeah.

John R. Kleven (26:20)
Hmm.

Chad Bautch (26:26)
Yeah, unbelievable. Yeah.

John R. Kleven (26:30)
Now, you don't wait.

Chad Bautch (26:37)
Correct. Yeah.

Mike Bramhall (26:42)
part of the process that chunk had to be paid upfront in cash. ⁓ But like I said, it was 25 for us and we only got three embryos out of it. And my wife's a teacher, know, at the time I was a firefighter paramedic and that's a lot of money for anybody. So we knew we just wanted a kid. We wanted to have a kid, we wanted to be parents. ⁓ And so we just...

Chad Bautch (26:42)
Yeah.

Yeah, that's unbelievable. ⁓

Yeah.

Mike Bramhall (27:09)
didn't want to essentially risk using all three embryos and then having nothing and having to come up with another 25 plus. And so we just opted for one and for two, we asked our doctor and my wife had no like health issues as far as reproductive or anything else. And then the actual quality of the embryos. So they'll grade the embryos and tell you how healthy or strong they are.

Chad Bautch (27:12)
at one time. Yeah.

John R. Kleven (27:30)
We'll you next time.

Chad Bautch (27:34)
Yeah, that's right.

John R. Kleven (27:36)
Thank

Mike Bramhall (27:37)
And

the three that we had were strong enough that they were super high quality. And because my wife had no other like risk factors, the doctor suggested only doing one because she thought that if we did more than one, however many we did, there's probably a pretty strong chance that they'd take. So, you know, we did it, we did it, we did it. And we have two kids, out of two tries, thankfully, like I said, and for what it's worth, the first round was about 25.

Chad Bautch (27:54)
Gotcha.

Mike Bramhall (28:04)
And that's including all of her meds and including the transfer of our firstborn. And then for our second daughter we paid, it was between like five and $7,000 to transfer and do the meds just for that and not do the whole cycle again, just to do the transfer.

Chad Bautch (28:16)
Gotcha.

Mike, you brought up a good point, ⁓ talking about there's the financial burden of it all. I'm sure this process comes with mental health issues amongst yourselves, probably a strain on relationships. Did any of you, first of all, talk about your mental health around the whole process? A, about, especially maybe with you, John, realizing I'm the issue here.

Dakodah Harrell (28:19)
good.

Chad Bautch (28:44)
It's my fault we're not having kids. And Mike, you can talk about it too, since you weren't sure about the sperm at the time. And then B, the stress that it caused on the marriage. Was there ever a point where either of you were like, this is too hard, we're done, I don't wanna do this anymore? Talk to me a little bit about the mental stress.

Mike Bramhall (29:03)
I'd be lying if I

said that it wasn't hard emotionally. I mean, it was absolutely hard emotionally, especially for us when we did that transfer. Because of me having my issues with the whole procedure, she was supposed to be on bed rest.

Chad Bautch (29:22)
Yeah.

Mike Bramhall (29:23)
And she couldn't be because she had to drive me to the ER and then I had to have emergency surgery and then all this. So we are already freaking out, hopeful that IVF works in the first place. And then we can't follow the instructions given because of emergency situations. But that being said, this whole process is about hope, right? Like we went into the process without an option of having a kid. That option was off the table to do naturally.

So that was the hard part, at least for me, and I don't want to put words in my wife's mouth, but you go into that with hope. You don't go in there expecting a kid or if you do, you shouldn't. You should go in there hopeful it happens because you want it to happen. But if you go in there expecting anything more than the possibility of becoming a parent, you're just going to get yourself let down because this is a very hard process. It's a very hard emotional process. And you have to understand that it's not like

I'm going with CF and fertility issues, but the hard part was my wife. She had to go through all that stuff. She had to do all the shots. I had to do one day of procedures. Like there is a lot that goes into this and like she's a teacher. She's having coworkers do her shots at the school. Like it's a, it's a very in-depth, emotionally hard process. ⁓ and you know, I, luckily I was leaving the fire department.

John R. Kleven (30:37)
Yup. Yeah.

Mike Bramhall (30:49)
around that same time. that was able to made me a little bit more emotionally available for my wife. But just know that if you're going into it, it's going to be stressful. It's going to be hard. it's you got to you got to work together as a team to make it successful. Otherwise, got to you mean it's going to be even harder.

John R. Kleven (31:07)
That definitely for me, think being married for 10 years and then it's, you know, the fingers pointing at me. I think my, really hit us pretty hard because not only is it the terminal disease, she was actually probably more thankful for that because she was like, now we have answers and now we can you know, find something and pushing me to go get more answers for that. ⁓ for me it was,

you know, am I worth it? Am I worth all this pain and agony and hormones and money? Like when you could go somewhere else and probably get pregnant easy, you know? like,

Chad Bautch (31:48)
Yeah.

John R. Kleven (31:50)
this whole struggle and this whole thing even worth it? mean, it dug us down to ⁓ validating, you know, should we even be married? You know, so after 10 years, it...

it dug down and like, you can't have kids, you have this disease. ⁓ That's how I felt, you and you, but I think ⁓ my wife

She didn't marry me, you know, like, if I find out anything, we're gonna bail on this. We're in this for the long haul regardless and through sickness and through health, they say, when you say your vows and we meant it when we said it. so, yeah, we had those conversations. Am I worth it? And obviously she validated I was. ⁓

Chad Bautch (32:45)
Yeah.

John R. Kleven (32:45)
And I think it got us closer together to get us strong enough to be able to go through some of those mental, ⁓

those emotional times that you

I remember ⁓ she was saying at one point in time, when we found out before we had the hope, like Mike, that's exactly what it is. You have this hope and it's totally worth it, any of the pain or the dollars that are spent. But before that, before we had hope, I play guitar, my left hand is very important. And my brother was getting married in December and I was gonna be playing some guitar for the ceremony.

Mike Bramhall (33:04)
100%.

John R. Kleven (33:22)
And I remember her saying, we won't be able to have a child that has your eyes. And I was like, you need to stop right now. And she said it again. And I put my fist into a wall. I couldn't control. I'm not a, like I'm the most chill guy, but my, I hurt so bad in my heart from that. I wanted something else to hurt and it happened to be  my left hand. And you know, I had a puffy hand and a broken knuckle for the wedding and,

Chad Bautch (33:35)
Mm.

Yeah.

John R. Kleven (33:51)
That's the kind of raw emotion it can bring out. But once we started getting those answers from our IVF clinic and just reaffirming our love and reaffirming that it's worth it, all of it is worth it to go through, I would go through it again. It's like I would beg, steal or borrow.

Mike Bramhall (34:09)
Absolutely.

John R. Kleven (34:14)
I was buying and selling guitars, buying and selling cars. We were trying to make money and just trying to do all this other stuff because even before the IVF clinic, it's expensive, genetic test for two people at a major hospital, expensive.

Chad Bautch (34:19)
Yeah.

Mike Bramhall (34:28)
That's a lot.

Hey, Chad, can I bring up one more point too? So I think this is an important topic, Dakodah. I can't remember. Have you had a transplant or no? No. So when I did IVF, it was all done post transplant. And the reason I learned this is because the opportunity wasn't presented to me, but it was presented to multiple other people I know. So transplant, one of the meds that you're given after is called Prograf

Chad Bautch (34:30)
Yeah.

Absolutely.

Mike Bramhall (35:00)
multitude of other meds that you can take, but those meds can actually cause like birth defects, ⁓ sperm death, all kinds of stuff. So they suggest that you freeze your sperm prior to your transplant so that you have non-medicated sperm that's not essentially risking being poisoned. So I had my transplant at Duke and I never had that sperm frozen. I didn't know that was a thing until

I started IVF, they're like, oh, you got your sperm frozen. I was like nope, And I was actually the first, my doctor had been doing it for a long time and I was the first patient that she had done that was post-transplant with CF. She had done all kinds of CF patients, never post-transplant and really didn't think it was going to work. And so we are wildly blessed and I feel very lucky that it did, but I think it's very important for

Males with CF, especially pre-transplant, are made aware of that and, you know, make plans because it can ultimately increase your success rate. If you want to be a father, that's what you want.

Chad Bautch (36:03)
Yeah.

Dakodah Harrell (36:03)
Yeah,

John R. Kleven (36:04)
That's

it.

Dakodah Harrell (36:04)
thank you. Thank you for telling me that because I as of right now knock on wood haven't been to the point where I needed a transplant or even brought up the discussion of transplant. but.

Mike Bramhall (36:14)
Amen.

Amen,

brother.

John R. Kleven (36:20)
That's a good point, Mike, is doing all you can do prior to. If you feel like you were created on this earth to be a father, there's a lot that you can do up front. And maybe you're one of the two or 3%.

Mike Bramhall (36:33)
There's a lot.

Maybe for those of you out there, I have 100 % met males with CF that have kids naturally, quote unquote, the fun way as Chad calls it. Like it is 100 % possible. Like I wasn't lied to by my doctors that told me it was possible. It is possible, but it is very rare. So just know that and plan. Even if you want to start planning financially in the future, like you can set some money aside that way you're

John R. Kleven (36:39)
Yeah.

Dakodah Harrell (36:49)
Hahaha!

Chad Bautch (36:58)
Yeah, for sure.

Mike Bramhall (37:05)
When you do meet someone and you want to start a family, you got a base for it.

Chad Bautch (37:10)
That's a great point. So I do want to wrap this up. ⁓ Before we do though, Dakodah, you were here for some education. You have not been through the IVF process. What are your thoughts? Tell me what are your key takeaways from today?

Dakodah Harrell (37:28)
There's lot of key takeaways just from getting from John and Mike is I definitely got some thinking to do and future planning to do. Cause the past few years, I was a stepdad to a nine year old kid for a while and we split. We agreed on splitting, but, ⁓ I.

Just to back up, John is saying, I do think that I'm on this planet to be a father at some point. I'm 30 years old, so I'm still on the younger side, but I know that time is of the essence. Because once we get into getting to older thirties, it's just my background is I'm a medical assistant, Mike. So I know.

Mike Bramhall (38:16)
Mhm.

Dakodah Harrell (38:17)
Definitely

when we're when we're when we're in our 30s getting into our 40s we are on the backside of being high risk. With anything so. Yeah, there's a lot of planning.

is I'm trying to get myself financially set so when I want to find that person and to start a family, I can.

Mike Bramhall (38:33)
Mm-hmm.

So there's grants out there for males with, or anybody with CF that want to go through IVF. Most of them that we have found have only been for people that don't have any kids yet of their own. They came out after we already had our first kid, so we couldn't use it when we wanted to go for our eight month old. if you have, like Dakodah, you meet, when you meet your wife the next, hey, next year, right, and you guys want to go through IVF, there are programs because you don't have any kids yet that...

Chad Bautch (38:47)
True.

Mike Bramhall (39:10)
will help pay for it. it seems like a very daunting, very high, scary number, but there's access to help for it.

Chad Bautch (39:12)
Yeah.

Dakodah Harrell (39:12)
Yeah, as I've heard.

Yeah,

I've heard that back then, not even pre-COVID and back in the 2000s, like insurances didn't want to pay for anything. And then as things change, as everything is changing in health care, is, you know, insurances are, you know, allowing a certain amount depending on what insurance you have. And then there's grants, there's

you know, scholarships that, you know, can help you start that IVF process. So I just have to find them.

Chad Bautch (39:56)
There are. All it

takes is a little bit of research. Well, gentlemen, thank you so much for joining us today. Appreciate the conversation, the candidness of it, and your openness to share with us. I we want to welcome in Dr. Sigrid Barrett now.

So we are going to say goodbye to you guys and welcome in Sigrid. Thanks guys.

Mike Bramhall (40:16)
Thanks, Chad

John R. Kleven (40:17)
Yeah, thanks Chad.

Dakodah Harrell (40:18)
Thanks.

Chad Bautch (40:18)
Next, I'd to welcome Dr. Sigrid Barrett. Sigrid is the Dean and a tenured professor at the University of Nevada, Las Vegas School of Nursing and is an expert in pediatric nursing. Her research focuses on reproductive health and quality of life for adolescents and adults with chronic illnesses.

Chad Bautch (40:39)
Welcome Dr. Sigrid Barrett, how are you today?

Sigrid Barrett (40:42)
I'm great. How are you, Chad?

Chad Bautch (40:44)
Also doing very good. Thank you very much for joining us today. I want to start just by asking you to tell us a little bit about your connection to CF and how you got involved with the whole fertility aspect of it.

Sigrid Barrett (40:56)
Sure. ⁓ So my journey in CF is quite interesting in that I am a pediatric nurse. I'm a nurse practitioner. I teach. I'm a faculty member and actually serving as dean and professor at ⁓ the University of Nevada, Las Vegas in the School of Nursing. I'm also a researcher and my research program is centered on cystic fibrosis. But really I have a deep personal connection to CF and that is because I was married to a man

almost 23 years, and he had cystic fibrosis. ⁓ so, you know, being the spouse, ⁓ caregiver, ⁓ loved one of someone with CF really gives me a different perspective and insight as to what it's like living with CF and all the ups and downs of this chronic disease. So we've

seen incredible progress over the last decade or so. unfortunately, my husband did pass away in 2022. But I carry on his legacy in the work that I do. And certainly my focus in reproductive health, specifically in men with CF, is really informed and inspired by our lived experiences as a couple who went through plenty full of

fertility treatments, multiple rounds of IVF in order to make our two beautiful boys. So short and sweet, but there's a long story for anyone who cares to listen.

Chad Bautch (42:28)
Yeah, no, I think that's great. In fact, I'd love for you to just expand a little bit more. Just tell us a little bit about ⁓ Andrew, your husband, about his life with CF and some of the obstacles he had to overcome, and then ⁓ even just walk us through that IVF journey you went on.

Sigrid Barrett (42:46)
Sure. So when Andrew was born in 1973, his pediatrician actually told his mother that it was unlikely that he would see his first birthday and that to celebrate each day as a gift, because at that time, you know, it's not where it is today. Clinical care, early diagnosis was not, you know, at that time available. So he really

really did defy the odds. He lived until he was 47 and finished his schooling with a bachelor's degree in psychology, then went back and received his master's in social work. And then in his late 30s, he was the oldest in his class, decided that he was going to pursue a law degree. So he did finish, he became an attorney, all the while being evaluated

for lung transplant. really, I mean, we grew up together. I was really fortunate to be able to learn from him, appreciate life and the joys and the challenges of life, you know, every day through his eyes. And I know certainly there's many lessons that I've learned just being with him and learning from him. And how he coped with the uncertainties of every day living with CF, but really

truly inspired, but what I've seen not just in him, but in the many folks who I'm fortunate to know with cystic fibrosis and their families because they're some of the strongest people I know. So of course, you know, being a nurse, when I first met him, I realized that if I were going to be serious with this guy, that if we were to, you know, plot the future and getting married and certainly creating a family, that would mean

being open to the idea that we may be childless or go through adoption or go through foster or go through a biological pregnancy so that entails, you know, fertility treatments. So in our case, we did IVF and it took a little while to conceive. And only those who've gone through the IVF journey can truly appreciate what it's like

going through something like this where your life stops, you know, and the world revolves around the shots and for him he had to contend with, you know, the challenges of being in a reverse role. So for the first time he's the one needing to give me shots, right, because towards the end I needed progesterone and oil injections and that's a deep I.M. intramuscular injection that he had to give to me.

And there were points where he's like, this is not fair that I'm having to put you through this, your body through this. Things like this can make a couple stronger or could divide them. In our case, it did make us stronger and we were successful after the fifth try of IVF. So we did five cycles of IVF to conceive our now 18 year old son. And then we waited a little bit ⁓

Chad Bautch (45:52)
now.

Sigrid Barrett (46:01)
to

try again post transplant. He received his transplant in 2011. And finally in 2015, we were able to conceive again biologically and he is now a 10 year old, rambunctious 10 year old. So we have two biological children after 13 cycles of fertility treatments. Definitely not for the faint of heart. Certainly, you know, I'm sure we'll dive into it a little bit more,

but there's a lot of opinions out there, a lot of judgments, criticisms, well-meaning comments, I would say, from family and friends who think that perhaps, you know, this is God's will, why are we pushing the envelope, and all those things that, you know, you try to tune out as much as you can because we felt that this was our path, this was our decision, and it made sense for us.

Chad Bautch (46:56)
yeah, so first of all, as we know, most men with CF up to 98 % likely are born without a vas deferens So you mentioned IVF and that's probably the most common way men with CF go on with building a natural family, a family of their own, so to speak. So you touched on that process and for you and how it strengthened your relationship with Andrew.

But you also mentioned that you had one child pre-transplant and one child post-transplant. Tell us about just the differences in the way you had to prepare for both of those.

Sigrid Barrett (47:30)
That's excellent. And I think this is largely...

understudied, certainly not discussed openly. And so thank you for asking that question. So yes, we have one son pre-transplant and one son post-transplant. So for us, we were fortunate enough to have saved or cryopreserved

preserved or frozen, Andrew's sperm with several extractions over the years. And so we had remaining sperm that were frozen and ⁓ it was fortuitous in that we were able to use that sperm post transplant. And this is really the focus of my research because there's not much being discussed in the CF world about the use of your own sperm to conceive

biologically without risks. So, immunosuppressive medications, transplant medications may have teratogenic risks to fetal development. And so, this needs to be a conversation ⁓ with the couple, with certainly the CF care team and the transplant team, whether they understand that if they were to become pregnant, if the couple, if the woman becomes pregnant,

with the husband's sperm post-transplant that it carries some risks. And so it would be ideal in the pre-transplant evaluation phase that this conversation, this discussion is brought up. That perhaps you need to start thinking about sperm banking, right? ⁓ Or if that was not done, the use of donor sperm. And so I think we need to normalize this kind

kinds

of conversations and being open to the different ways that you can make ⁓ and create your own family that makes sense to you. ⁓ yeah, I think the oncology world has done a great job with putting this as their standard of care. So for example, if a woman gets diagnosed with breast cancer, ⁓

or some kind of cancer that requires them to have chemotherapy or let's say radiation that could impact their reproductive tract or their ability to have a safe pregnancy later on, then part of the initial conversation right off the bat is fertility preservation. And so we're not there yet in the transplant community, in the transplant world. So there's a lot to learn from our oncology colleagues about how

They do their care in a very comprehensive, holistic way. And so that's what I'm trying to do with my research is just to increase awareness. you know, my latest research that was funded by the CF Foundation looked at a telehealth intervention where a group of my study participants actually received a very tailored telehealth counseling related to their fertility preservation option as men with CF in thinking about

building their family should they have a lung transplant or any other transplant later on.

Chad Bautch (50:38)
Yeah, so that is something that we talked about with Mike earlier.

I know that when I went through transplant, we never discussed that. It was never a topic that was brought up. It was never a topic that was brought up with either my CF team or my transplant team. So it is something we need to do a better job of. And I encourage all men, if you're listening to this podcast, it sounds odd, but if you're getting listed or if you're in the process of already on the list and you're just waiting, bank that sperm because it's going to prove valuable to you afterwards if you decide to, you know, continue to build your family that way. So very important conversations that are not

happening that probably should I agree.

Chad Bautch (51:16)
When I was going through my process, my urologist asked, as we're going in for my sperm retrieval, if we had backup sperm on the ready in case something was happened, what is the medical reason why, if you can speak to this, why I would need donor sperm as a backup in that situation?

Sigrid Barrett (51:36)
It's a great question. So it's good to have a backup because certainly we know that generally speaking, men with CF, it's a plumbing issue for them, right? They do still produce sperm. It's just that there's no bridge to allow for that to come out the natural way during sexual intercourse.

Unfortunately, there may be other issues with the sperm as well. And this is a conversation that needs to happen with the fertility specialist. And that's probably why they recommended you have a donor sperm. Because once they do the retrieval and they aspirate what they could, they'll have to look under the microscope and really examine if the sperm is healthy enough, if it's viable enough to be used. And there are many, steps in the rest of the IVF

of journey that would require you to get the healthiest sperm, for example, needed for the ICSI procedure, ICSI, that's intra-cytoplasmic sperm injection. It's a special procedure done to inject the sperm right into the egg so that there's no guesswork anymore, right? It helps with the fertilization and then we do assisted hatching as well. So all of these really highly technical things.

things can then proceed, but you need to have good healthy sperm.

Chad Bautch (52:55)
Gotcha, yeah. You did mention this earlier too, and I do want to talk about this. People are very open and honest with us sometimes to a fault, and everybody has an opinion that they want to share.

because it just seems like our lives, and not just me, anybody that has, not just CF people, it's anybody who has in-laws or parents or good friends that all feel like they want to have a say in how we create our families at times.

Most the time that's very well-meaning. They're just looking out for what's best for us and that's the way they perceive it at least. But I know when we were going through, we got comments like, how could you do this? You you're going to leave Heidi to be a single mom for a long time. And so talk to me about your experience with those friendly conversations that people like that have with us.

Sigrid Barrett (53:46)
You

Yes, the friendly conversations, that's very loaded, right? ⁓ you know, so we had to be selective at first as to who we shared information and plans. Some are, some were very supportive, but some ⁓ were not shy about sharing their thoughts on it. For example, comments like, but there's so many children

Chad Bautch (53:53)
Yes.

Sigrid Barrett (54:14)
available

to be adopted right now. Why put your money into something that may not be guaranteed? So there are again lots and lots of judgments.

Sigrid Barrett (54:26)
We were actually in the process of signing on with an adoption agency at the same time that we were pursuing IVF the first couple of tries.

Sigrid Barrett (54:34)
And Andrew and I had to always have our center. We had to be really sure that this is what's right for us. And there's many, many, conversations. And we did, we went through all of our different options.

We you know, we knew in our hearts that we have to try this route. And for him and I, it was important to try to have me experience pregnancy, right? Because that is such a unique experience. And he wanted to be able to give me that experience because some of the other challenge of CF, you know, did not allow us,

but for him to ⁓ allow me to have this experience of becoming pregnant and seeing the belly grow over months, I mean that was a very important part of what he wanted to give me. And so as long as you have these frank conversations with your partner and figure out that you're solid,

regardless of what the outside world has to say, you know that you're not going anywhere, right? You're doing this thing together and you're strong and united together. So that's how we face the world despite all the well-meaning comments shared with us.

Chad Bautch (55:59)
That's great.

And kind of to wrap this up today, Doctor, talk to us about what's going on in your research world with all the new medications that are out there extending life for people with CF. Families are growing, CF families are growing. Tell us what's new and what's changing in the world of infertility or let's talk about fertility in the world with CF.

Sigrid Barrett (56:24)
So much good stuff is happening really, Chad. I mean, we live in a time and a place where, you know, we're seeing ⁓ statistics like if a baby is born with CF today, they are expected to live very full, healthy lives into their sixties. Goodness, that was such a departure from when I started reading about CF in my nursing books, you know, in the 1990s, where it was categorized

as a childhood illness, right? I read about it in my pediatric textbooks because kids did not grow up into adults in that time period. So now we have research that looks into the aging of CF. What is that like, right? And certainly specific to SRH, sexual and reproductive health, we're looking at what's the... ⁓

Parenthood experience of people with CF, especially the women because historically women with CF, had a hard time getting pregnant, could not get pregnant, had very challenging pregnancies if they can get pregnant. And so we needed to examine those experiences and what that's like. For the men with CF, you know, it's rich. We're finally trying to talk openly about what it's like going through ART, assisted reproductive technology

We have one team that's looking at the menopausal symptoms and experiences of women with CF. We've never had to think about that in the past. And now there's

a group of folks really diving into it and seeing is it different ⁓ for the women with CF? Is it earlier or later? What are their symptomatology? How do they experience it? Are they being treated well by their healthcare team? Who gets to look at their symptoms? Is it the CF care team or is it other folks now involved? So, I mean, there's a lot of good things happening in CF care and CF research and ⁓

More to come, for sure.

Chad Bautch (58:54)
That's amazing. That's truly incredible. Yeah, based when I was diagnosed and my parents were told 12 years old would be great, the fact that we're talking about menopause and old age stuff is incredible. So Dr. Sigrid Barrett, thank you so much for joining us today. Really appreciate the conversation. I look forward to any kind of chat we might have again in the future. I really appreciate you today.

Sigrid Barrett (59:16)
Thank you, Chad. It's my pleasure.

Chad Bautch (59:18)
Thank you for tuning in to Bold Enough to Ask. We hope you can join us for our next episode on becoming a dad. You can learn more about BreatheStrong CF by visiting

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