Living With Cystic Fibrosis

Dr. Heather Walter talks about CF and Post Traumatic Stress

Episode Notes

Dr. Heather Walter is a CF Mom.  I first heard Heather speak at a Mom's retreat in 2021 (via zoom). I was so impressed with her I asked her to speak on this podcast.

She is the Director of the School of Communication at The University of Akron and a professor of organizational communication.

Dr. Walter’s research is focused in the area of organizational communication and conflict, with a focus

on health organizations and post-trauma health communication. She has published many journal articles

and chapters on this topic, including several case studies designed to show the applied nature of

communication research. She has a textbook in press and available in January 2022, titled “Casing

Conflict Communication.” She currently serves as a faculty fellow for the Center for Conflict

Management and works regularly with local community organizations and hospitals to improve

communication skills and patient advocacy.

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Dr. Heather Walter Bio:

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The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis.  You can find him on Facebook here:

This podcast was produced by JAG in Detroit Podcasts.


Episode Transcription

Note: Transcript is generated by AI and may contain errors.

Jon: Nothing on the Bonnell foundations. Living with cystic fibrosis podcast should be considered medical advice. Medical advice can only come from your CF physician. Cystic fibrosis could be a devastating diagnosis, but living with the disease can bring positivity and a new appreciation for each day. From the Bon L foundation in Detroit, Michigan.

It's the Living With cystic fibrosis podcast. Sponsored by vertex pharmaceutical. Here's your host, Laura Bonnell. 

Laura: All right. Well, wonderful to have you. It was great to meet you, even though we've only met on zoom. We're only a state away you're in Ohio. I'm in Michigan. We won't even talk about football. So, all right, we'll just stick to cystic fibrosis. You have a textbook coming out. A textbook is out in January, calling casing conflict communication.

And I'm just glad to meet you. Another CF mom mom to mom talking about PTSD. I guess I wanted to start by talking about PTSD and CF. My daughter, Emily and I who's she's 24 we've talked about PTSD and I remember not the exact year of what, when I read. That I did have PTs D from cystic fibrosis and then my daughters did as well.

And then we started talking about it, but I think there is a belief that it's only if you're at war, if you're a soldier or. Who else could have PTSD? No one. And then you started feeling like fear of going back to the hospital because everything that's going to happen. So kind of walk us through what PTSD is and how it relates to cystic fibrosis.

Heather: Sure. So it's wonderful to meet you too, Laura, this way. So PTSD is often defined as an anxiety disorder that is caused by exposure to some traumatic event. So that may be the typical ones that we think of that the media sort of highlights and movies and television shows, highlight our war or severe abuse or assault of some sort.

We don't tend to think of it in relation to the battle of medical issues, but there's a good amount of research that shows. That patient's faced with severe medical trauma and their caregivers can also deal with these same symptoms, the same situations. Like you talked about the idea of the fear of going back to the hospital or some other sort of traumatic moment in CF.

The diagnosis itself can be really traumatic. And we know that when babies are born with CF. It's very confusing. There can be a lot of different things. You're told your child has failure to thrive, and there's this incredible guilt that comes with this and it's a genetic disorder. So there's the guilt of passing it on to your child.

And for many it's a real battle in the early days, maybe your newborn goes right into surgery for a Mokodean ileus, or maybe your newborn sits in the NICU for days or weeks at a time. And there's an uncertainty to their survival. That kind of ongoing hospitalization or ongoing trauma can just sort of exacerbate the anxiety and the mental anguish that many parents have to go through that simulate the same PTSD of going to combat or being abused or, or.

Laura: And it's so interesting to me. I, it just occurred to me. I've never talked to my mom about this. She must have some sort of PTSD or some anxiety that she worries about me worrying about my kids. Right. She must have some kind of grandparent PTSD or. Maybe it's just anxiety and everyone deals with it differently.

Heather: We do deal with it differently. And I think that until we have a language, a vocabulary to put a name to what we're experiencing, we're sort of just taught to ignore it. I mean, To a CF child. We've spent a lot of time in doctor's visits a lot, right over the years, but nobody's addressing how we feel or how we're coping or how we're managing nobody in those millions of doctor's appointments.

That's not their job. Their job is to take care of our CF kids. And so our job by default becomes to just push that part of ourselves. Down and ignore it. So, yeah. Are your, is your mom dealing with that watching you go through what your daughter's doing? I think that's really possible, but your mom and my mom are from a generation where they didn't have that vocabulary to even try and have that conversation.

Right. So it think that what we've learned in the last 20 or so years of research, Is that this is real and that if we call it what it is, there are tools to help us. There are tools to manage it. There's ways that we can identify that, that we're not crazy and that we're allowed to have these emotions and that, that understanding it and just naming it is really 

Laura: powerful.

And I think there are. Many horrible things that have come from COVID of course all the people that died, but the good things are, it has raised awareness about life expectancy, about mental health and. So many people now realize maybe things that we've known for so long and still sometimes we haven't addressed, but I was thinking even my nieces and nephews who are younger than my daughters, they probably too, when they first learned about the girls and the life expectancy at their age appropriate.

That was probably also hard for them to process, but now they're in junior high and high school and they're processing it because of COVID. So there is so much right. 

Heather: COVID has been amazing on some level for CF. Right? My daughter went to school from the time. She was very, very little with a set of twins that also have.

So they were forced into being separate all the time and nobody really understood. They were in first grade and, and they couldn't really understand that care, that protocol that we have for infection control, but with COVID now they're in high school, there's this normalcy of wearing masks around one another and keeping that.

Distance. So that's been really helpful with COVID make people understand how germs transfer and why that is important to follow these protocols. But back to your point, I think that it's really opened up a lot of people's understanding COVID in terms of mental health and how important it is for us to take care of ourselves.

To survive and that these kinds of dramatic life-changing moments can have an impact more than we roll with a lot. Right. We all do, but it's also okay to roll with it while you identify that this has been hard and this has been life changing. 

Laura: And I think it's easier, at least I know I did it for a years and years when anyone ever asked how I was doing, I always said fine.

I never really, to a nonsense. Mom or dad, I would never really say what was going on with the girls or when they were in the hospital. I just felt like they didn't have time to listen. It was a lot, right. There's so much from how the child's doing, how I'm feeling, how my husband's feeling. So. I think I felt so often that it was easier just to say, oh, everything's fine.

How do you feel about that? Your, your daughter, is she 15, 

Heather: 15? She's in high school. I remember feeling like I didn't want any. To not see my daughter as a human, another person, a normal kid. And so spending too much time explaining how I felt or how hard it was, or the traumatic felt like you were driving a narrative that made your child's.

Kitty worthy or different in a way that meant they weren't going to accept her. I don't know how to really articulate it, but we shielded. Right. And 

Laura: it was also, I remember saying to my girls, no excuses, you have CF. Everybody has something you're not staying home unless you're sick or have a fever, like same rules.

Right. Which were overcompensating. Right. And sometimes they just need. It'd be like, okay, we have CF and this is why we have to stay home. Or this is why we 

Heather: have to do this. Yeah. It's definitely an overcompensating, a, you're a person who happens to have CF, but first year person, and first year, my daughter's very into swimming.

She's a competitive swimmer. So you're a swimmer and you're, you're a person and you're, you're a family member. Oh, you also have CF, like that's just a small part of your story, even though some days it's a really large part of our story, right? It is the days when you're doing four treatments a day because of sick time that's, it's very consuming.

Laura: And my daughter chose Michigan state university, which she loved, but it was only an hour and a half away from us. And I think. Well, I know she would have preferred to go to school in Chicago, but she didn't want to be that far away for many reasons, but mainly health-related reasons in every direction her CF clinic is in Anarbor and and all of those things.

So there are just so many. PTSD sort of things, right? 

Heather: So many things that you have to think about and change some of it's out of fear and anxiety, right? It's just, we know what happens when we don't do treatments or we know what happens when. Winter comes and you start to feel sick. And the fear that independence too far from home or too far from your care team can be paralyzing for some people.

Laura: Right. And I have my other daughter who they both have CF, the other daughter went to New York for undergrad and. England for her masters. So, but she was healthier and she didn't have the same fears and experiences. So help us understand more of what PTSD is and what it means to CF parents. 

Heather: So the basic model of PTSD has three sets of symptoms and not everybody experiences all of these.

But let's talk a little bit about what those three are, because I think that CF parents find themselves in some of those categories. And so for anybody listening, this might be something that they can sort of do a self assessment. There's three sections. The first is called re-experiencing. And so people with PTSD tend to have, or have times in their life where they.

Not on purpose are unconsciously subconsciously re-experiencing bad or traumatic moments in their lives. So that can come in the form of nightmares. It can come in the form of thinking and rethinking and rethinking a moment or a period of time, whether that's diagnosis or time in the hospital or fighting with a baby to get them to do their treatments or.

Having a child that has to get IVs and how tough it is to get a pick line. I mean, there's so many moments in our CF life that we can think of. And for some of us, we just roll with it. And for others it's really, really, really traumatic. And so over 62% of. And a study out of Brazil that have kids with CF identified that re-experiencing is a common occurrence for them, whether it's through nightmares or whether it's through intrusive thoughts, but they are in some way.

Re-experiencing the trauma from, from somewhere along the way in CF. And I think that. It seems really normal. What we do with CF is often very repetitive. And so how can you even forget when you do pick lines four times in two years, those traumatic moments can really just condense into one really, really heavy moment.

And as you're, re-experiencing a bad cough or a bad moment in time, you can go right back to. And so that's something sort of, we all sort of see 

Laura: and the coughing is a big one. My daughter's coughing again, and I am so worried and it's everything I have when she's an adult now with CF and it has to be in her hands.

I really. I go back and forth. Sometimes I'll say something like, Hey, did you talk to your CF doctor? And other times I don't say anything because she's in charge of her own life, but absolutely you just think back to eight months old, the first time she had an exacerbation and at eight months is in the hospital.


Heather: my daughter laughs at me because the first time I hear her cough, I'll say, are you feeling okay? Do you think you're getting sick? And it's like normal people cautious sometimes. And sometimes we choke and this doesn't necessitate like that level of anxiety, but as CF moms, we know that sometimes coughing is enough to send us right back to that, those bad moments.

Laura: Absolutely 

Heather: for sure. The second area of symptoms is called avoidance or numbing can be part of that. And that's sort of the process of mentally or physically steering clear of the trauma. So like ignoring it, pretending it doesn't exist. So it might include diminished interest. It could be just cognitively sort of putting on blinders and forgetting that anything like this is that important.

Disbelief not believing that that it's an issue or thinking it's important or a sense of foreshortened future all sort of fall into that category. And the research that came out of Brazil 15 years ago, that looked at parents with CF found that only about 11% identified that they were in an avoidance.

Although I would argue that it's probably more of a sampling bias. Like the people that you chose to interview about this that were willing to come forward and talk about their experiences with CF probably are not the people that are experiencing. Symptoms, because I think that if you exist in the CF community and you meet people online or at your CF family days and those things that there are definitely people that aren't willing to attend those things, and aren't able to admit.

The severity of, of CF. So I think that that avoidance is still sort of an issue for some, but not for everybody. 

Laura: And I think it's bigger. I also think we don't even know we're doing it. We can't even identify it. Right. So true. Yes. I think so often. I even talked to a mom last week, who, when I asked her to tell me about herself and her son's situation never wants to, to mention herself or anything about her journey as a CF parent.

So I think so many of them. Are completely numb and not even thinking, 

Heather: we take ourselves out of the story on some level, because we haven't been given permission to put ourselves in the story. It's, it's our kids' story. It's our kids' journey. And so, yeah, you're probably right. It's not even a consciousness that were ignoring it or we're avoiding it.

It's actually happening in a place that we can't even identify on something. 

Laura: And is numbing it part of when you, I'm not sure about this one when you don't want to talk about CF or maybe you don't want your community to know, is that numbing or is that maybe protecting yourself? 

Heather: I say that's probably still part of that whole avoidance.

I would say numbing is more. You're so immune to it all. Think about the way that we talk about CF. We talk about medical procedures. We talk about these things from such a clinical distant way that has very little emotion to it, right? I mean, how many times can you talk about the trauma of it? Sometimes you can just sort of glaze your eyes over and talk about things that other people would find horrifying in the same way that.

I deal with cancer. Talk about chemo and the side effects. I think you just come to a place where you can like close off your emotions on things that would be super emotional to talk about. If it weren't so normal, 

Laura: that makes perfect sense. Absolutely. And what's the third one? So the third 

Heather: one are called arousal symptoms.

And that has to do with like this hyper alertness that occurs. Post-trauma probably the number one one that comes up for CF families is hypervigilant, right? This idea that if I can control everything, if I can do everything possible that I can keep my CF child. Alive. Right. So we have Purell in every room and we're, we're using it all the time.

We line up all the nebulizers and we boil them and we make sure they're sterilized. We try and keep on a routine of doing their medications and their treatments in a way that is so. Over the top. And yet we're told that that's what we're supposed to do. Right. So it's really a thin line between this mental control thing of being hypervigilant and.

This is the I'm following the rules, right? And so it's really hard to separate those two. So other arousal things might just be inability to sleep or difficulty concentrating or easily startled. But the hyper-vigilance I think is really the one that stands out with CF families in that Brazilian study.

63% of CF parents said that they dealt with some form of hyperbole. So just becoming really germaphobic or really over the top, because you feel like you can make a difference. You feel like if you don't do it, something's gonna go wrong. 

Laura: Right. And then you, you bring in COVID and there's just so much, I mean, you're trying to have Thanksgiving sort of normal, and we had everyone test for COVID that day and you hope everyone's vaccinated.

That's not always the case. So there's a lot going on. There's 

Heather: so much. But on the flip side, I feel like COVID made pure selling yourself and isolating when you're sick more normal. When our kids were little, when my daughter was little, we would have friends come over and we'd put on the birthday invite.

Please don't come if you're sick. And everyone in my, my circle knew that you can't just show up with a cold in the same way that you. To other places. And I feel like COVID maybe has changed the narrative around that and change the way we think about exposing one another to our germs. 

Laura: I hope so. I mean, I remember when Molly was five, my first born and someone came with a fever, their kid had a fever and I think they had the flu and I was like, oh, so sorry, you have to leave.

You have to leave. And they were like, what? I'm like, no, your child is clearly. And this would mean hospitalization for my daughter. You have to go. So yes, we've come a long way. And hopefully that all the good that COVID has taught everyone, hopefully that sticks around. I hope 

Heather: so. I hope people don't like.

Seesaw back to their old behaviors because COVID, won't get my freedom kind of feeling and hopefully it will stick because it's really just being kind to other people to stay home when you're sick and you can be 

Laura: contagious and hopefully people understand more, like you said earlier, how easy it is to spread germs.

Heather: Right. I think I talked to my daughter about this, not that long ago, how. That was a traumatic moment. Like maybe not PTSD traumatic, but traumatic moment. When I first learned that CF kids couldn't be with CF kids, that germs that they carried were harmful to each other, and that remember it was a three-foot roll for awhile, and then they made it a six foot rule.

And that, that was. All of those things were like a really big deal because it was just so out of our normal lexicon of how we used to behave. And nobody's thought about how to droplets travel in the air and, and how do we get them and how does that make us sick? And, and how was that shortening the lives of CF patients for years and years that they.

Realize what's happening 

Laura: and it isolated our kids and parents from each other. You couldn't have playgroups. I mean, you still can't get together unless you're outside. And then of course it depends on what bacteria they have, like how serious it is and what your comfort zone is your, that your child.

Heather: Right. I mean, when my daughter was first born, I was like, well, at least she could go to camps and do fun, things like that. And then to realize that that was not going to be in her future, that those CF camps don't exist anymore. And that they were deadly for many. That was really hard. It was, it was a really hard moment to realize that this was going to be a lonesome and lonely.

Laura: And one thing that I like to do and it's finding time, but I do like to write in a journal, but I also find that I'm not always truthful because what if my kids read. Someday. So it's hard to be completely truthful about how CF impacts us, but what are other ways other than maybe journaling other things that you talk about that can help people with PTSD.

Heather: I think there's a lot of ways. I mean, the typical ones would be speaking with a therapist or working on your own self, such as through journaling running or, or some kind of physical exercise is often considered a really great way to sort of clear your mind. There's recent research that I think it's super cool on playing video games.

That is most complete as on Tetris of all the things that sort of, that really, really focused trying to fit the puzzle together is actually really, really therapeutic for people, especially after a very traumatic moment. But there's also research that looks at other kinds of video games that have therapeutic impact.

But there's art therapy to getting creative, focusing on something you can, can do. I know during the very beginning of the pandemic, I, when we were sort of locked in our house, I was super anxious and I just ordered a bunch of those paint by number canvases. And that was really soothing for me because.

It took a lot. The numbers were super tiny and my eyes are not that great. So it really, there was no room in your brain while you were searching for numbers and colors to absorb some of the things that you needed to absorb. And it was very thorough. So I think it's about finding the kinds of things that help you.

We got a dog when one of my kids was dealing with anxiety and that was really, really helpful too. And I know a lot of people in the pandemic adopted baby animals. To get them through my 

Laura: daughter. Got it. Both girls got 

Heather: cats. Yeah. And that's super helpful too, right. To have something else to take care of or to pet or to be with, or to play with.

And I think that's a really powerful move. So it's exploring. The different possibilities that work for you. If arts and crafts, isn't your thing. And it's only going to bring you more anxiety than that's not for you to try and find some of the other ones that would 

Laura: work. Yeah. There are so many things that would actually be interesting to talk to CF moms.

All their different ways. Sometimes when I knit, I really have to focus. I'm not one of those knitters who like, can just look at a pattern and talk to people while I'm knitting. I really have to focus. So if I ever have time to knit, that's a great one. 

Heather: I think what it comes down to is figuring out what you need, knowing that this is a legitimate.

Issue, right. Not diminishing ourselves as CF parents that we just have to push on through, but recognizing that there's a language for this and that there's a legitimacy to, it can help to then. Internally reflect on what kinds of things you need and seeking those 

Laura: things out. Absolutely. And I mean, I remember when both girls were hospitalized at the same time, it was good and overwhelming, but it was good because then I didn't have to drive.

I usually didn't drive back and forth from the hostile. Home because my husband, Joe always stayed at home with whoever was healthy. And I was always in the hospital 24 7, because that's how, the only way I could focus pretty much was I'm here. I'm staying here and I can't go outside this bubble because that's my only way to.

Kind of keep it all together. If I leave then it's it's I don't know. It was just, it was just the way I had to do things, but there were occasions where I would leave and have to go to a school event to see her. But it is very interesting. So in a presentation that you did, I saw also the stages of trauma.

Heather: Yeah. So, I mean, if you think about it, the CF lifeline as any lifeline has different moments in time, right? So when babies are little, we have a set of traumas that may be very different from when kids start to age up and become more independent. When we're looking at their infancy. That's usually where we're dealing with diagnosis, but we're also dealing with a lot of the other things that having a baby includes for many people.

And that could be a traumatic birth, right. Especially with a child that has CF that may have digestive issues, meconium, ileus, or something. That puts them in the NICU or requires surgery right away. So there's no time to even wrap your head around a diagnosis and you're in trauma mode. You're in survival mode.

There's new routines, there's new medicines that come out. I do remember a moment in time where they said, well, we're going to add this medicine. I think it was Pulmozyme or whatever. At the moment. And it just was like, this is one too many at the moment for some reason they can give you 20 enzymes and they could give you three inhalable medicines and they could have you on the vest three times a day.

But when they say we're going to go to four times a day, it just, that one pushes you over the edge. But then as kids age, there are other issues that come up that can be traumatic in different ways. They become school age. You have to worry about what are their friends going to say? How are you going to keep them safe from germs?

How are they going to get their treatments done in the mornings? What if there's other CF kids at the school? What if they have a feeding tube? My daughter had a feeding tube for a long time. And when she was little how are you gonna handle sleepovers and hygiene and hospitalizations where you have to entertain a child?

So there's all kinds of different things that could. Invoke some of the earlier traumas or build some of their own as they get older and you're trying to give them independence as you're trying to teach them. Take care of their own medicine, clean their own nebulizers, assure that they follow their own schedule because this isn't a one day thing.

You don't turn 18 and everything just lands on your plate. We have to get them there slowly. We have to get them there to a place where they have that independence and your girls are completely independent. Points, but you know, it wasn't something that came out of nowhere. And so there's all that rebellion that happens in the teen years.

That can be incredibly traumatizing and you're focused on them. You can no longer control what they do. You can't sit on them and make them do a vest treatment. You can't force behaviors that they don't buy in. And that's at the same time when lung function may really dropped down out of nowhere, just because of puberty or because of aging.

And so that can be really, really traumatic too, because suddenly you could go from once in a while, times in the hospital to much more regular frequent experiences with your, your hospitalization. And of course, as you get into early adulthood and adulthood, then there's issues surrounding fertility surrounding.

How do you find a partner that will. Treat you well and understand your disease and not sort of be scared away by that. And those are all things that the patients are dealing with too, that our kids are dealing with. But as parents, as time goes by, we have to pull our hands back. Well, you're not allowed to have our hands in all of it, and that can be traumatizing

Laura: as well.

Yes. And, and I've thought of so many things as you were saying that, but I was recently talking to a young. CF mom who has a young child fairly recently diagnosed and a sibling without CF. And I said to her, Because everybody's, we're all worried about being fair and not making one child feel guilty. And I just said to her, listen, both my girls have CF.

One was sicker than the other. Someone always felt guilty. So let it go. Even if our kids didn't have CF, we can't be the perfect parent. And we're always there. There is something that our kids are going to say, I can't believe you did that mom or whatever, but she got tears in her eyes and it just reminded me.

That's just the beginning. There's so much that we build up and worry about and we do have to let it go. And it made me realize in talking to her, we do have to let some things go and then fast forward to my daughter's age, will they find someone. Who can, I don't want to say deal with CF because that's not the correct word, but someone who can understand it and help them.

And they will, of course, but when you find the right person but yeah, there are so many things at so many different stages in their lives, right? 

Heather: It does. And, and so it's not, you, you may get it. You may come to a place in, in their early childhood and be like, okay, I got this, I got this, I figured this out.

Right. We've got a good pattern. We're doing it. And then they changed stage and you're forced to change too. And that can be really, really traumatic and difficult. And even parents that don't deal with CF have moments when their kids transitioned to. Period of time in their lives. That can be really difficult.

My oldest does not have CF, but he went away to college and, and there was all those similar fears. Does CF wrap up additional fears first? Absolutely. But we have those things and we always wonder, are we being a good parent? Are we doing everything that we can? Are we being fair? Are we treating them well?

We all just do the best we can. And 

Laura: don't you think. We really have good sense of humor, right? We really, we are having fun. We are laughing. We get life, I think, to such a deeper level. Maybe now because of COVID other people are getting it as well, but I have always felt that we really get life. We really.

I can let some things go and laugh about other things that people may not find funny because, oh, they tried to I dunno, get a PICC line in and it took 10 times, not funny at the time, but maybe later when you have bruises up and down or two scars, instead of one, it's kind of funny. I mean, we just have a different sense of humor.

We're still enjoying life. We're not like depressing, boring over worried people. I think we do have a pretty good balance. I think 

Heather: it's true. I mean, I think some people struggle with it more than others. And I think. Multiple things can be true at the same time. You can have been traumatized by something in CF that has changed you irrevocably, and you can still laugh and, and have joy in life and, and find wonderful things to do and go on to live normalcy.

We are not a movie of the week. That is. Rolled up in a ball in the corner trying to survive. That's not the point of my research in PTSD, in CF families. It's just a way to put a name to it and help people to get through it and to recognize that it's okay as parents of kids with CF. To identify our own emotions to all of this.

That, that doesn't mean that anybody's placing blame, that you're not a good parent or that you're struggling so hard. It's all about you. Why are you making this all about you? That's not the purpose at all. And that's not my belief in this it's that these are pervasive symptoms that we can manage. If we can just figure out that they 

Laura: exist.

And we are raising some really compassionate kids. I've tried. I mean, I know cystic fibrosis is an invisible disease, unless they have an oxygen tube. Really, people don't really know all that they're going through, but they have so much compassion for others. 

Heather: They do. And they're not as squeamish about different medical things.

So my daughter had a feeding tube or, or your kids had PICC lines. We've all had multiple PICC lines in our families. So they're not afraid when they go to the hospital to see a grandparent that's connected to tubes and stuff. And my daughter's talked about maybe. Doing child life. She really like found the people in the hospital that work child life, really a compelling job.

Like she thinks that might be something she could do. And for 

Laura: anyone who doesn't know what that is, that is, they meet with the child or the parent, and they give them things to do whether it's drawing or painting or for Emily, they really helped her. She had such a fear of the blood draws for many reasons, but they really helped her through that phase.


Heather: they're amazing. One time we were in the hospital, they've rolled in like a little tiny oven and cookie dough and they let her bake cookies and decorate them. And it was a lifesaver for us in the hospital because it was a way to focus our attention and a chance for me as a parent to leave the room for a minute to go get a cup of coffee or something.

Laura: And we've touched on it just a little bit, but communication in regard to PTSD as far as talking to schools, friends and parents. 

Heather: So my actual area of expertise is in communication. That's sort of where I started. That's what my PhD's in. That's what, I'm a professor of all along the way. I've. Really thought about the fact that a parent of a child with any medical issue has to be able to advocate.

And that requires really important relationship building and really important communication skills. I think that there are times when you are told something in the doctor's appointment that just sets off your, your trauma, right? That additional medicine that they're telling you now that you have to build in that additional component that they want you to do that scary prognosis or whatever it is.

For many of us that puts us into like a trance, right? How can you advocate if you are struggling in a moment of your own. Trauma of that. So I think that it's really important to find ways to advocate anyway, to work through that trauma, to find ways to communicate with the schools, with the doctors, with the care team.

Complete care team with the nurses. I remember I remember the nurse coming in when we were inpatient once and brought in the enzymes and said, I'm going to get you some food now, so you can take your enzymes. And for anybody outside of CF, that's sort of the backwards thing, right? They didn't sort of understand that these weren't pills that were taken on the hour.

These are pills that you took while, while you ate and. They require constant advocacy in constant interjection as a parent. And it's something that really can be stymied by the post-traumatic trauma issue. 

Laura: Yes. And. There has been some judgment either by other parents who maybe didn't know, I mean, absolutely a ton of support, but you know, there's just various things and it's all about, oh, I don't think you understand.

Let me help educate you about this disease because. Really important to get support, right? Your friends need to understand, but we've had such wonderful support from friends. But it is a reminder that there is on occasion. You just realize, oh, I know so much. It's in me. I haven't like, I, I don't always have a postcard holding up, Hey, guess what?

Heather: Yeah. Sharing it and showing it at the right times. Cause you don't want to scare anyone. But I remember the first time my daughter went for a sleepover and she still had the feeding tube and the CF stuff. And you have to educate a parent before you hand off your child and you don't want to overrule.

Here's all the pills and here's her tea you want to do as much as you can to make it easy, but you also don't want your kid to not experience those things. And so you've got to sort of figure out how much you can say what your elevator speech is going to be to explain the CF in a quick, concise way that doesn't scare anyone, but makes them understand the importance of 

Laura: what you're asking of them.

And then in the school system, we were really fortunate. We had great teachers. One teacher had a teepee in her room and every time. It was Molly that had her, she had a stomach ache because of her CF intestinal issues. She could curl up in the teepee and the teacher would just like, just go in there when you're when you're having stomach aches or even the office had a cot in the nurse area and Emily or Molly, whoever it was could always just go down.

They would know what was going on. So it really is important to communicate with the school because your kids are there so many hours a day. They are, 

Heather: we were very fortunate as well. Our local school, as I said before, where there was twins with CF that were also in the school. And so the principal and all of the teachers in the school.

To have someone from our children's hospital, come in and do a training for everyone. So that as the kids went through all the grades, all of the teachers would have known and would be aware and it was super kind and helpful. And, and it was the first time that there was anybody in the school with CF and suddenly there were three kids in the same grade.

So it was a challenge, but it was also, they were wonderful. And I, I was so thankful. It really, really made it that much. 

Laura: Along the way. I think that's a really good point. Something that we did until ninth grade was to hand out a brochure to each teacher. And then I did a page on each girl. About what their needs are in addition to the brochure, just so they would understand.

And the other thing I realized too, was people had a misunderstanding about enzymes. You give them to them once a day or so they didn't realize it was with every meal. So those things I think were really helpful and it helped keep the stress down for the kids. 

Heather: Yeah. There's so many ways that you can find to advocate that would reduce the unknown, the ambiguity of the disease when you're deep in CF, the way that we were from the very early stages of our kids being born.

Yes. Begin to forget that not everybody knows everything we know. And so you got to start with baby steps and you have to be able to advocate in little bits and bytes, but sometimes you need big waves of information. So maybe it's in the beginning of the school year where you put something together.

Maybe it's later on when, when we were in preschool, We as if I was a patient, but it felt like I was I did, we did a whole thing with the parents because it was really important that people not send their kids to school. Or I put it out there. If you have no other choice, you're going to send your kids sick.

At least let me know. So I can keep my kid home. Kind of message that we sent and the teachers were really, really positive about us coming in and doing that because they also want people to keep their sick kids home. Absolutely. It becomes a real problem. And, and until they understand that another kid, your kid's friend could be hospitalized, if you just think it's a cold it's, sometimes it sends home that message a little bit quicker.

Laura: Isn't it? Interesting. I remember. Even in those preschool days, we were so crazy about hand-washing for all of those reasons that everyone now knows in COVID. But I felt aside from the CF exacerbations, my girls were healthier than people without CF, because. We really trained them from the get go, right?

Wash your hands, use a Kleenex, wash your hands after you use a Kleenex, et cetera, they 

Heather: do develop really good hygiene, right. Because of it. And so, and my daughter was a swimmer and I used to joke she got dipped in chlorine every day. So that helped too. 

Laura: Right. Great. We've talked about some of this too, but communication, climate, anything.

That you wanted to mention about that. 

Heather: So when I talk about advocacy specifically to the care team and building the relationships, I also spend time talking about the idea of building a communication climate that is supportive instead of defensive. And, and there's a lot to this and I teach a lot and I don't know if your listeners are interested.

I can certainly provide some resources to make it a little bit easier, but in my experience, there's ways that we communicate that can really put somebody on the defensive and it could be as simple as. Telling your child's friend's parents. Look, you can't send your kid to school when they're sick. And that could be enough to make them feel like, Hey, you don't tell me what to do.

I do my own thing. And suddenly you're at a, an adversarial type relationship instead of one where you can be supportive and you can depend on them and they can depend on you. And the same happens with the care team. I feel that I've spent a lot of time learning about CFS. I think a lot of CF parents do, and I found that some of the CF care members, the doctors and the nurses, sometimes if I came to them with too much information or I was too aggressive about that information, it could sort of make them recoil.

So instead of thinking here, I have a partner with the CF team, they felt. Defensive. And like, I was trying to do their job. I was trying to tell them what they should do. So I find that it's really important when we communicate with the care team to sort of recognize that our words matter, that the way we approach things matter that if we put up barriers, Between us and the people that we need things from that we need to build this relationship with, that it's going to make it even harder.

The hurdle gets even higher. So trying to find ways to communicate that don't put up those barriers that don't create judgment or defensiveness to the other person, I think is incredibly important. 

Laura: And I think. Most CF parents have good relationships with their clinic team because you're seeing them all the time.

But then there are variables where the, the nurse who's doing the blood draw is unfamiliar that you know what they're poked so many times you've got to really have a conversation look into that child's eyes and not just alright, I'm going to stick you. I mean, and for the most part, they're great, but.

Allowing your child to advocate and communicate and kind of say, all right, you're not working for me. We're going to have to use somebody else. 

Heather: Yeah. I mean, these kids are. They go through a lot. And I think there were moments in time for me that maybe other parents can see of parents can relate to where I think the CF team, whoever it was at the moment, whether it was the person taking their blood, or it was a person doing a throat culture just wanted me to press a button and make my kid compliance.

Could not, didn't have the time to deal with a kid who is saying, no, I'm not going to open my mouth or no, I don't want to do a treatment or whatever it is. And that they just sort of looked at me with this. Well, you're the parent make them do it kind of thing. And that was really, really hard for me.

To figure out how to communicate back to them that I haven't found a button on my kid that I can just press and make them do exactly what I want every time I remember being told by the character. Well, just tell her, you'll take her to target afterwards if you do this. And I thought, well our whole life is about negotiating the things we need them to do.

And if it's all brides, I'll have no money. We're in trouble. It can't just all be bribed. There has to be more to it. We have to treat them like real human beings that have feelings and those feelings are legitimate. And then we'll work at getting those things accomplished. We know 

Laura: they're important fears and real fear.

I mean, Emily's fear of blood draws was huge. It was. I would cry because she was so terrified she would escape from the room, run down the hall, get hysterical. I mean, there was so that took years of therapy and, and it was all because of an initial first horrible blood draw. And after the. Oh, well, I mean, it's really hard.

It's really 

Heather: hard. And we took my daughter to behavioral therapy to deal with that too. She was so scared of the blood draws and now she's the easiest of my kids to get to, to have a vaccine or, or whatever is necessary. But those fears are real. And if we ignore them and just force them through it, that's just creating more trauma.

What we have to do is understand in the same way, we'd want somebody to understand our fears and our concerns. It's just about the humanity between us and, and, and, and making sure that our children have as much of a voice as we do. 

Laura: And just to wrap it up here, I know also then with COVID on top of CF, there was COVID in that fear.

And I know. For the most part, everyone I've talked to with CF we're like, sign me up, get me triple Vaxxed. I'm good to go because there was no fear at that point they've been through so much, give me a shot. It would be so much worse if I got COVID. Right. So they, they really I think have been able to kind of educate the public at their level.

In their communities. 

Heather: Yeah. I feel like because we've been watching as CF parents medicine go through all the trials and how all of this, how, how a medicine comes to the forefront, how vaccines come to the forefront, how the FDA works. I feel like we have just a little bit more insight on the whole process.

And I think that. Certainly makes us cautious, but I also think we can trust that we know how many medicines we've watched since the time our kid was little that didn't make it out of trials that had so much promise. And then they had to say no to them. So we have, I think, a higher sense of connection and trust and eagerness to do whatever we can to stop the COVID and keep our kids.

We have 

Laura: spent a lifetime being educated about it and that, yeah. So I do understand if somebody is just learning about this through COVID, but hopefully they're going to the CDC and the NIH and all those great places to get information. Is there anything else you want to talk about PTSD? That maybe we didn't touch about before we wrap up this wonderful podcast?

Heather: think we touched on most, most of it. I really do want to implore anyone who sees themselves in this to reach out to someone, find someone that they can talk to about it. This is a normal experience, I think for a lot of CF parents and it doesn't have to control your life. There are ways that you can get yourself help.

Hmm. Continue to live a good life and continue to be a good parent. It doesn't have to stop everything, but it is really important to recognize 

Laura: great point. And there are so many resources and we have many listed on our resource page. If you need help, mental health help or reimbursements and things like that.

And also we will put contact information for you as well. So if people want to contact you, they can. Thank you, Dr. Heather Walter. Thanks so much for talking with everybody on this podcast. It was great. And really appreciate it. Thank you.

Laura:  The original music in this podcast is performed by Kevin Allen. (Sung: It's not complicated.) who happens to have cystic fibrosis. 

Jon: This has been the living with cystic fibrosis podcast for more information, and to learn more about the bond L foundation, check them out

That's B O N N E L L This podcast was sponsored by vertex pharmaceutical, the science of possibility and produced by Jag in Detroit podcast.