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Conversations in Pulmonary, Critical Care and Sleep Medicine by the American Thoracic Society
[00:00:00] non: You are listening to the ATS Breathe Easy podcast brought to you by the AmErikan Thoracic Society.
[00:00:19] Erika: Welcome to the ATS Breathe Easy podcast. I'm your host, Dr. Erika Moseson, a pulmonary and critical care medicine physician here in Portland, Oregon, and also the host of the Air Health R Health podcast. Today I am joined by Stacie Revella for a very important conversation. Stacie, why don't you introduce yourself?
[00:00:36] Stacey: Hello. Thank you so much for having me, join this podcast. my name is, Stacie Reis. I am a mother of three children, um, and, one of them is living with cystic fibrosis. I currently am a staff member for the Cystic Fibrosis Research Institute as the advocacy and programs associate.
[00:00:59] Erika: And [00:01:00] I recall first hearing you speak, um, from a patient perspective at a wildfire session at an AmErikan Thoracic Society Annual conference, and it was very powerful.
Um, do you mind sharing with our ATS Breathe Easy audience, how you came to find out that your daughter had cystic fibrosis and how that affected your life?
[00:01:17] Stacey: Yeah, we, um, we're living in the valley in California and, um, we believed that she was, um, we got stuck in actually asthma analogies. Um. departments.
So, we were going through cycles and cycles of trying different medications and seeing if they would work. Meanwhile, her chronic cough was only getting worse. Um, we had hoped by moving up to, the Sierra Nevada mountains, that the air quality would be clearer. Um. Maybe provide some respite, um, for the asthma and allergies that we thought we were dealing with.
Um, and in fact, [00:02:00] she just continued to worsen. So it wasn't until, um, we started all over again. I think her medical record may have been following her and people were going off of, you know, previous notes. Um, so I wanted to start all over and, um. Leave no stone unturned. And it wasn't until we had brand new fresh eyes, um, that they, they finally allowed, um, us to see a pulmonologist.
And I know that that doctor. Could see right away that she had cystic fibrosis. She spent a lot of time with us that day kind of educating us. Um, um, and I remember being a little confused by what she was sharing because it didn't to me have anything to do with why we thought we were there. Um, and then, yeah, the very next, um, test, um, available for cystic fibrosis was on a Tuesday.[00:03:00]
And, um, yeah, that it. It came back, um, very quickly. We spent the rest of the afternoon with that same doctor, um, learning that her life expectancy was, um, very short, that she had a long, hard road ahead. Um, that we had missed an opportunity in her first nine years of life to give her the treatments and medications that she needed.
And that that, you know, in my mind, what I was hearing was that was gonna cost her more time. on this earth. it was devastating. They told us to go home and pack our bags for a two week hospital stay. It was, very, very overwhelming.
[00:03:42] Erika: I can't imagine. And then you also live in an area that is highly affected by wildfire smoke.
And can you share how wildfire impact has changed since you first moved to where you live now?
[00:03:54] Stacey: Wildfire was not on our minds. When we, moved, [00:04:00] to the Sierra Nevada mountains, we did a lot of research and noticed that the air quality was higher. Like, was like an A rated as an A here. Um, uh. And, had we known that, there were gonna be this threat of wildfires, we never would have moved here.
Um, although I'm not sure there's any safe place, um, that you can live, and not be affected by wildfires. Um, the worst of it really, um, occurred in 2018. Um, and before that we really had only one experience with any kind of wildfire living in the valley. Um, it just was, it seemed like a once in a lifetime event and, um, and then it began happening, um, year after year, multiple times a year.
So, um. 2018 was the, um, campfire, in [00:05:00] northern California, one of the nation's deadliest wildfires. And it was only 50 miles away from us in a town exactly like ours. So, we had friends and family that lost their homes, um, in that fire. Um, we knew looking outside in the very, uh. Thick and dark sky raining down ash.
That that ash was literally the, um, lives and the homes of an entire community that was just like ours. It was, um, really mind boggling. Uh. To watch it just rain down on you. Um, meanwhile, we are trying to protect our lungs, especially our daughter's lungs from this, um, very, very unhealthy, smoky air that, just remained for weeks and weeks.
So there was no getting away from it.
[00:05:57] Erika: Absolutely. It's, it's [00:06:00] kind of apocalyptic at times, you know, in addition to the mental health stress of the existential threat of fire. How do wildfire events in general affect those living with chronic lung conditions?
[00:06:15] Stacey: It's an added layer of. I, I don't even wanna call it stress.
There's gotta be a stronger word for it. Um, when you're living, and this is, it brings up emotion. So I might, um, start feeling, you know, reliving some of those feelings. Um, it is very easy when you are living with a rare disease. To move on to next. You really try to flush the stress as quickly as you can because you know that you need to be enjoying your moments, right now too.
Um, there is, um, just kind of a, um, a hypocrisy to it all that you find. You can find joy in these deep, dark places, but then when you have so many, [00:07:00] um. Pitfalls to fall into. It really just feels like you're on a, a very slippery slope and you just cannot get your footing. So, pick one. Pick a, pick something to prioritize.
That's, that's the hardest thing. Um, you are protecting. Physical health for your child against not just a rare disease, but also, um, you know, the air quality, which is, um, alone can cause a lot of damage, in healthy lungs. Um, and then you, you, you have to prioritize, um, you know, what, what is most important out of the, your physical health, your mental health, um, do you like if you're not under evacuation orders?
You're living in. Constant smoke. Do you leave your house? How can you do that? How long I, how long are you gonna be gone? Where are you gonna go? Who are you gonna displace? Can you afford to leave? [00:08:00] you are always living at the ready, so the medications have to be filled. You need lists and lists and lists, um, in case you do have to evacuate.
Um, but just keeping up on everything. Your gas tanks aren't supposed to go below like three quarters of a tank if you're living in a, in a wildfire area. So half tank is, um, you know, you are zero, but you might be sitting on the road for hours. Just idling, you know, um, you might need your AC on to help filter your air.
So you can't just sit there with your car off. Um, if it's hot outside, um, there's flames on the roads. I mean, you, you, you need, you, it's hard to think about everything that you could possibly need to prepare for. And then where I always land is, um, the cost on your mental health. So, you really can become quite a shell of yourself, [00:09:00] and that's not something that we talk about enough in, you know, with our medical teams.
Um, sometimes not even enough in our own circles of family and friends, again, because of the absurdity of it. Um, and you are again, trying to constantly flush whatever is weighing you down so that you have some lightness of mind, and clarity, to make these decisions. So, um, it is, it's, it feels like being in a, in a hurricane.
[00:09:30] Erika: Absolutely. You know, I practice in the Pacific Northwest and a lot of our patients are affected by wildfires and you know, in addition to the places of immediate threat, even things like when you're in an okay area, but they have to shut off the power, you know, and then you can't use your DME, right? Your nebulizers or your concentrators or it's hard to refrigerate your medications that have to be refrigerated.
And then it, you know, it hurts your ability to even monitor. Um, it can just. Be so isolating and, you know, threatening to health even when the air is clear. [00:10:00]
[00:10:01] Stacey: You are right. They did shut off our, um, power in our town for up to a week at a time. Everything one gas station was open and that was it, this particular week.
Um, so, and that was the longest time, but they would shut it off every time the wind blew. And every time there was, another spot fire. So it was constant. We really weren't sure that her medications that needed refrigeration were even viable, but you cannot refill just because you think it might not be viable.
These are expensive medications they have, um, you know, they're, they're difficult to, to get extra of. So they really only allow enough for that month. Yeah.
[00:10:49] Erika: How did the COVID Pandemic coming on top of this affect everything for you guys?
[00:10:56] Stacey: That was, um, a whole [00:11:00] nother pitfall. we fared okay. I would say the first year, along with everybody else, everybody was in the same boat and there was some camaraderie in that, at least, the second year we were.
To remain in quarantine, because, um, they, the medications that, people with living with cystic fibrosis use were being used for COVID. So there was a shortage of medications. Um. The, ventilators that were used, um, you know, as triage, um, were being prioritized and, people with cystic fibrosis were not being prioritized.
So there was already things that had happened that felt very threatening that you just really cannot get sick. Um, you know, with, uh. Trying to keep her healthy. that second year, um, [00:12:00] her medical team informed us that it would be pointless to have the other children go to school. They would just bring it home to her and, we could not risk it.
They, you know, of course they didn't have much of an understanding of it. It was brand new. So, um, I think we needed to take the precautions and, um, it was in that second year that we, um, we. We're really faced with a lot of wildfires in our home. We evacuated that year several times. We were quarantined, we were isolated.
and it was, extremely heartbreaking, um, to watch my three children, just absolutely lose their humanity. So, um, again, coming back to mental health, um. Trying to make decisions. Um, it is really hard to try. I mean, I, it, it [00:13:00] feels a little like, um, I hesitate to bring up Sophie's choice, but, you know, what do you prioritize?
What is, what is the high priority? The, the physical health, the mental health, when you see that, um. You know that, that extra layer of isolation, um, you know, deflated everybody. And, um, and then it also, honestly, a lot of guilt because we were that family that needed extra help. There was a week that we had to evacuate our home.
There was a, a large fire that was about five miles away from our house. Um, we evacuated an hour away. Um, and a good friend of ours left his home with his three children, um, and they're all in school. Um, but we needed to remain in quarantine and it really felt awful that, you know, there's, we're all still living in this world of c [00:14:00] and yet, you know, we're displacing another family.
Um, we were watching, um, the wind, uh. trajectories change. We were watching the COVID deaths rise. Um, we were watching medi medication supplies shrink. Um, and then of course we had our eyes on the fire that was threatening our home, and the containment would grow and shrink, you know, and as, as would the strength of the wind and the, and where the wind was blowing.
So, um, you know, you, it was really absurd to, um, ask everybody to get up and. Log on to school and make breakfast and like you still do these things, but you are just living in, total absurdity and it does something to you, you know, you're not sure what's real anymore. After years of living with, um, so many constant threats.
[00:14:58] Erika: Yeah. And you have [00:15:00] spoken fairly eloquently about how the chronic stress of life and death situation starts to affect someone's ability to even just make good decisions. And can you share what your experience with that has been?
[00:15:12] Stacey: Yeah, there, um, I, I, I wish I could explain it. Um, I can tell you what happened, but, it's almost embarrassing that, um, I was tapped out.
I couldn't think. I couldn't think anymore, and I wasn't even aware of that until I said something out loud. That was very absurd. And the, the, the day that comes to mind is, um, it was a day in 2021. Um, we had blue skies and there was a construction crew outside, working outside of our home, in our neighborhood.
And, um, we're home, we're in quarantine. Um. I, I can see the smoke billowing out of our window. Um, and, we all had, um, [00:16:00] you know, a community blog that we were connected to for evacuations and um, and updates and, you know, all of our phones were blowing up and we could see that the fire was, um, you know, right downtown, like in, right outside of our downtown area.
And that day. My daughter had a medical appointment in town and um, as the construction crew was on their phones to go and evacuate their kids from school, I picked up the phone and called the medical office and told them that we were gonna be late for my daughter's appointment because I had to drive around the fire.
And it really felt, um. Absurd and embarrassing to hear. Um, you know, the, secretary that answered the phone, she yelled, you know, what are you talking about? Like, we are all evacuating. You need to pack up your cars and get out now. [00:17:00] And she slammed the phone down. And, that was kind of a, a wake up call, but I wish I could say I felt something.
I still, I didn't. At that moment, I didn't want to pack the car again. We had already evacuated so many times. Sometimes to stay a night or two, sometimes that a week, sometimes we would leave for a few hours and then get the, you know, call, on, on the blog that it was okay to turn around and come home again.
And, um, it all felt. Unreal. By that time, I really had a sense of, oh, that's what, that's why we see on the news that people are stranded on their rooftops after several evacuation, like mandated evacuation. Not just warnings, but man, you know, after mandated evacuation warnings, they are still there. I think.
I think I, I finally, um. I was [00:18:00] frazzled enough that I wasn't able to make decisions, and that really scared me. So when you have, um, I mean, that was like the, one of the more frightening days in my life because I no longer trusted myself and I was already battling with, um, you know, what my, what state my intuition was in.
And I just felt like that was proof that, um, you know, I. Something had really checked out in me and I didn't know how to get that back.
[00:18:34] Erika: Yeah, and I think you touched on this earlier, but for a lot of families, you know, it's not possible to just move away from areas affected by wildfires or other forms of health threats, especially in this time of escalating impacts from climate change.
How has your family wrestled with a decision to stay in an area affected by wildfires?
[00:18:53] Stacey: Well being that we had already moved once in order to try and find a healthier, um, [00:19:00] life for our kids, we absolutely, that was another layer on our minds constantly as far as like this big decision, like do you stay or do you go, can you even sell your house?
In this fire zone. I mean, I'm not gonna tell you what we pay for fire insurance. I will tell you that we constantly are being threatened with being canceled. So you know, can you even sell your house? If you did, where would you go? So where is safe from natural disaster? And, we have already, um, you know, worked on creating, the safest home for our daughter.
We have spent, um, thousands of dollars on, um. Air purification systems, a whole house air purifier, and we have a blue light sterilization system on our, you know, on water in that comes into the house, whether we're drinking or showering in it. Um, so, you know, everything [00:20:00] is as, um, safe for her as possible while she lives here.
Um, and, where would we, where would we go? My husband's. Clients are here in his line of work, we would literally walk away from all sources of income. Not to mention, um, the relationships that we've built over the years with our medical team. Um, of course we love our family and friends that are around us too.
Um, but, there's so many reasons to scare you into. Just a, like a frozen state. Like I don't, we don't know if we should stay or go. and if it would be worth it to try and uproot everything. And, um, I have a friend living with cystic fibrosis that lived here, um, in our town and there was a, a, a fire one year that got within two football fields of her home.
And she was done with Northern California. [00:21:00] So she moved, um. To Colorado and the year after they moved, there were wildfires there, like near her home. And I think, yeah, I, it's a, it's a coin toss and I, we, we have decided to stay because at least we know, um, we, we know this. Um, life that we have built and we also know that we might lose the home and we have as much as we can come to terms with that.
[00:21:46] Erika: What are the top five things you think people caring for those with chronic lung disease need to do to be prepared for wildfires?
[00:21:55] Stacey: The first thing that comes to my mind is. Strengthen your mental [00:22:00] health and find your support systems, um, that self care and sense of humor. I'm not sure that's what you are looking for, but, um, honestly, no.
I think vital, honestly, that's the first thing that, um, I think of is, um, you know, find ways to release, um, whether that's, you know, the dark humor or um, just. Having, having that support system or that self-care routine that can help you, um, and self-forgiveness, honestly, you know, you can only do your best.
Um, we are all always doing our best, um, enlists, I would say, you know, when you have the mental capacity just to make lists and maybe ask for help, in making those lists as well. Um. Forethought, just putting some forethought so [00:23:00] that, you're not having to think on the fly. Um, but you, you might have, it doesn't have to be that detailed, but at least a little bit of a blueprint of, um, of options, you know, um, if you're faced with, um, you know, evacuations and or losing your home, yeah.
[00:23:24] Erika: Yeah. And from a research standpoint, obviously the AmErikan Thoracic Society engaged heavily in research for our patients with lung disease. As someone with a family member with cystic fibrosis, what do you think we need from a research standpoint to help our patients with chronic lung disease, um, navigate, you know, living in a world of climate change and wildfires?
[00:23:47] Stacey: my first thought is, um, going towards families living, um, you know, in underserved areas that might be, um, like living close [00:24:00] to highways. Um, you know, the, like we, the, the smog, around cities. what is that doing? Um, um. And the agricultural areas as well. the pesticides that they spray, um, and absolutely major research on, um, in.
In pulmonology and the effects of our air quality. Um, in general, I think there is a lot of research, on, um, the cardiovascular system, but nowhere near enough on, the effects on the lungs. And the hearts and lungs work, you know, almost as one. I mean, you can separate them, but they work, in tandem and the lungs are the filter to the heart.
So, um, I would like to see, um, at least as much research, um, on air quality and the effects on lungs [00:25:00] as cardiovascular research. So I, I, I think we would learn a lot, um, from increasing research and bringing that focus, to. To the lungs and the effect of, of the air and the quality of the air that you are stuck breathing in because no one can choose where they're born.
A lot of families can't choose where they live because it's unaffordable to move. So, um, you know, we are, it is, it is worth it, to create the best. Um. Access, not just to research, but also to, um, care so that we all have our, you know, we all have access to, um, our lives that we can live and, and thrive and not just survive.
[00:25:56] Erika: Yeah. Um, are there any ways you think the community can [00:26:00] support those living with chronic lung disease in unhealthy air? Whether from air pollution as you mentioned, or other exposures or during wildfire events?
we did receive, um, some community support, from the electric company. one day they delivered, um.
[00:26:20] Stacey: some generators and um, like mobile refrigeration units that was unexpected. Um. And that was really helpful. I really appreciated that. So when the community can come together and, um, and try to help support, families living and, um, you know, under all of these, these layers of stress, um, not only was that meaningful to us in that it was helpful and we needed those things, um, but man, did that feel really good to be seen?
And without even asking somebody cared enough to, you know, put that [00:27:00] program into a plan. And, you know, even as far as a delivery person, so, um. I, I feel like any time we can come together and take care, um, you know, that's showing the most beautiful side of humanity. And, some families are dealing with heavier things than o others.
And when you have the capacity to share resources, that is, um, an incredible support and it gives you a lot of faith in, in humanity. Yeah.
[00:27:36] Erika: Absolutely. Well, I wanna thank you for being such a strong advocate for those living with chronic lung disease, especially those with cystic fibrosis. Um, and I wanna be respectful of your time.
Is there anything else you wanna add?
[00:27:49] Stacey: I just really appreciate that, um, you know, you are bringing the patient voice, um, you know, to the forefront. I. Really, admire [00:28:00] the research scientists and the physicians, the clinicians, um, everybody out there that is, really fighting for positive change and access, you know, for families.
And, um, uh. It is, it kind of just feels like everyone out there is a rock star and, um, you know, we should have baseball cards for the change makers out there. and, you know, stats because it's really where the magic happens is is coming together. And it is just a real honor, um, to, to know how important it is to you and to, anyone out there listening.
Um, uh. Hearing the patient's story can help navigate, you know, what might need to be focused on or, you know, some steps that can change even in the medical field with, um, you know, providing care for your patients. You know, keeping in mind this mental health, I've always thought it [00:29:00] is, um, interesting that in so many of the sciences, you have field research, but, in the medical field, your field research is.
In the medical field, and I know that this is impossible, but wouldn't it be nice if we could take our doctor home with us for a week and she or he could see, what we're dealing with, you know, trying to get your daughter to do there in three, you know, two to four hours of breathing treatments a day.
So, you know, we know we need to do it. Um, do you know how hard it is sometimes on her? So, um, it might just change. Yeah. Yeah. Change the tone. Yeah. We are all trying. We are all trying our very best to thrive.
[00:29:47] Erika: Yeah. It's a full-time job living with chronic illness. Often.
[00:29:51] Stacey: It is, and not just on me. I don't know what it's like to live with cystic fibrosis.
My daughter does.
[00:29:57] Erika: Yeah.
[00:29:57] Stacey: Yeah.
[00:29:59] Erika: Well, thank you so much for [00:30:00] your time and for sharing your story and all the advocacy you do.
[00:30:04] Stacey: Thank you so much.
[00:30:09] non: Thank you for joining us today. To learn more, visit our website@thoracic.org. Find more ats, breathe Easy podcasts on transistor, YouTube, apple podcasts, and Spotify. Don't forget to like, comment, and subscribe, so you never miss a show.