Transcript: Season 1, Episode 2 - Becoming a Dad

Being a father is a significant decision for someone with CF, but with treatment advancements (in particular, modulators that have enhanced the longevity and quality of life of pwCF) and accessibility of assistive reproductive technologies, more men are finding the joys of fatherhood.

Bold Enough to Ask is focused on sexual and reproductive issues and concerns in the cystic fibrosis community. Some topics are better suited for a mature audience. 
This podcast is for educational purposes only and is not a substitute for professional medical advice. Always consult your physician or qualified healthcare provider with questions about your health.

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​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.

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