Download MP3 [1:04:02]
There are nearly 30K people inwards the USA alongside CF, 75% of whom were diagnosed as babies, in addition to one-half of whom are over the historic stream of 18. CF is a genetic progressive chronic disease. People are born alongside it. The affliction causes the trunk to create thick in addition to sticky mucous inwards the lungs in addition to wreaks havoc on the digestive system, pancreas, os density in addition to other things. Because of this thick mucous inwards the lungs, people frequently depict having CF similar breathing through a straw. This mucous leads to chronic lung infection, loss of lung functioning, in addition to disability in addition to death. In the 1980s children born alongside CF could hold off to live on until they were nearly 12 years old. The life expectancy for someone born alongside CF inwards 2014 is 38 years old. Treatment for CF includes daily medications, breathing treatments in addition to breast physical therapy inwards the shape of a mechanized vest that helps suspension upward the mucus. In some cases people alongside CF demand lung transplants.
So, those are the stats. But what does it hateful to live on alongside CF, in addition to what should social workers know nearly working alongside people alongside CF? I’m delighted to state that for today’s episode of the Social Work Podcast I institute the ideal guest. Elizabeth Shuman is a licensed clinical social worker who works as at the Grove School inwards Madison, CT. She also has CF.
Download MP3 [1:04:02]
Transcript
Introduction
Hey at that topographic point podcast listeners, Jonathan here. [sound of me breathing through a straw]. That sound? Me breathing through a straw. [sound of Liz coughing]. That sound? Today’s invitee coughing. Hang inwards at that topographic point – it volition all brand sense. Today’s episode of the social piece of work podcast nearly Cystic Fibrosis, or CF. We’re looking at CF inwards ii parts. In Part I nosotros larn nearly this chronic, terminal illness. In Part II nosotros larn nearly what social workers tin do when working alongside people alongside CF.
So, you’ve likely heard of Cystic Fibrosis. But unless you lot know someone alongside CF, you lot likely don’t know a lot nearly it. Here’s a quick overview. There are nearly 30K people inwards the USA alongside CF, 75% of whom were diagnosed as babies, in addition to one-half of whom are over the historic stream of eighteen (the importance of this number volition go clear inwards a minute). CF is a genetic progressive chronic disease. People are born alongside it. The affliction causes the trunk to create thick in addition to sticky mucous inwards the lungs in addition to wreaks havoc on the digestive system, pancreas, os density in addition to other things. Because of this thick mucous inwards the lungs, people frequently depict having CF similar breathing through a straw. This mucous leads to chronic lung infection, loss of lung functioning, in addition to disability in addition to death. In the 1980s children born alongside CF could hold off to live on until they were nearly 12 years old. The life expectancy for someone born alongside CF inwards 2014 is 38 years old. And that’s variety of amazing. Treatment for CF includes daily medications, breathing treatments in addition to breast physical therapy inwards the shape of a mechanized vest that helps suspension upward the mucus. In some cases people alongside CF demand lung transplants.
So, those are the stats. But what does it hateful to live on alongside CF, in addition to what should social workers know nearly working alongside people alongside CF? I’m delighted to state that for today’s episode of the Social Work Podcast I institute the ideal guest. Elizabeth Shuman is a licensed clinical social worker who works as at the Grove School inwards Madison, CT. She also has CF. You powerfulness withdraw hold seen her profiled, alongside her friend Nicole Burke, on the Today exhibit inwards June 2014 talking nearly the non-profit they started to heighten awareness for CF, called Outrun 38. Members of Outrun38.org, in addition to the wildly pop Facebook grouping – OutRUN the Odds, heighten awareness for Cystic Fibrosis yesteryear running, biking, swimming in addition to walking. OutRUN38 is a beautiful instance of how ane someone tin brand all the departure inwards someone else's life. Nicole started the grouping to back upward Liz during ane of her hospitalizations for CF. Initially, the goal was to acquire a few runner friends together to collectively run 3800 miles yesteryear Liz's 38 Birthday which was a yoke months away. Why would 38 such a big bargain birthday for Liz? Because people alongside CF are non expected to live on yesteryear 38. So, Nicole started the Facebook grouping Outrun the Odds, in addition to nine days later on at that topographic point were over 1,000 members in addition to who had run over 3800 miles. As of September 1, 2014, at that topographic point were over 5,300 members who withdraw hold logged plenty miles to move Blue Planet 8x over. Liz volition verbalize to a greater extent than nearly OutRun inwards the interview.
In the get-go one-half of the interview, Liz talks nearly living alongside cystic fibrosis. In the 2d half, nearly 22 minutes in, Liz talks nearly what social workers should know. Even though Liz is talking nearly ane specific chronic physical status - CF – her recommendations apply to social piece of work alongside people alongside a broad array of chronic physical AND mental illnesses. People alongside chronic atmospheric condition experience important loss - non merely big loss similar the permanent physical disability, but losses that people without a chronic illness powerfulness non recognize as a loss, such as non beingness able to attend a party. As a result, grief piece of work is an essential science for social workers alongside these populations. She coins the term "healthy sick" to depict people, similar herself, who are salubrious plenty to live on productive in addition to independent members of lodge as long as they are also able to care the portion of them that is sick. Liz points out that at that topographic point is non really a identify inwards lodge these days for the salubrious sick. Employers, insurance companies, in addition to fifty-fifty friends in addition to family, who would rather reckon the someone as either salubrious or sick, but non both. She is incredibly grateful to live on employed alongside the Grove School because different other piece of work environments, they back upward her inwards every way possible inwards her "healthy sick" CF journey. We verbalize nearly decisions that salubrious sick people withdraw hold to brand before coming out to others nearly their condition. We halt alongside a brusk give-and-take of running. It is a beautiful illustration of how people alongside atmospheric condition are the experts inwards their ain conditions.
Before nosotros acquire to Episode 89 of the Social Work Podcast, “Healthy Sick: OutRunning Cystic Fibrosis: Interview alongside Elizabeth Shuman, LCSW” I wanted to give a trivial historical context for CF.
It is summertime of 1952. New York City is inwards the throes of yet some other savage oestrus wave. Over 40 people volition of oestrus stroke – a tape that volition correspond some other threescore years. The emergency rooms are swamped alongside people suffering from oestrus – related problems. Influenza A virus subtype H5N1 immature physician at Columbia Presbyterian Medical Center, Dr. di Sant’Agnese notices something troubling nearly the children who are beingness admitted for oestrus stroke. Lots of them withdraw hold cystic fibrosis, far to a greater extent than than he would hold off given that CF is a rare disease. So why were kids alongside CF so much to a greater extent than affected yesteryear heat? Salt. Turns out, children alongside CF had sweat that was upward to half dozen times as salty as kids without CF. This regain led to ane of the most simple, accurate, in addition to non-invasive medical diagnostic tests ever: the sweat show for diagnosing CF. And that's where nosotros laid out our interview alongside Liz – alongside a Sweat Test.
Interview
[00:07:58]
Liz Shuman: So nosotros really create too much salt, in addition to that’s really how they show us. It’s called the sweat test. And I tin retrieve beingness nearly vii years old, in addition to they seat this band around my arm, in addition to you’re like, your arms is getting all sweaty, in addition to they really stair out the tabular array salt inwards your sweat. And if you’re over a sure amount, that is what qualifies you lot as having CF. Now they tin really show your blood type in addition to really regain out what type of mutation you lot have, in addition to there’s actually, like, hundreds of different types of mutations.
[00:08:32]
Jonathan Singer: So how does, sort of making too much tabular array salt interpret into gunk inwards your lungs?
Liz Shuman: I mean, this is sort of what they’re all trying to figure out, is—
Jonathan Singer: So people don’t really… know?
Liz Shuman: I mean, I think likely the experts really withdraw hold it nether command [Jonathan laughing], but it’s something around the poly peptide inwards our lungs. But there’s soundless really a lot of questions as to why our lungs really do what nosotros do. Because some other big number alongside our lungs is that nosotros really colonize bacterias inwards our lungs. So let’s say, you withdraw hold pneumonia, or you acquire some sort of põrnikas that causes you lot to withdraw hold a hard fourth dimension breathing. When you lot acquire better, your lungs volition really live on done alongside that bug. It’s gone—you took your antibiotics, in addition to you’re done. For a CF person, it really colonizes in addition to stays inwards our lungs. And so sometimes it’s active in addition to sometimes it’s dormant. And sometimes, you lot know, you lot powerfulness live on able to, alongside like, serious serious rounds of antibiotics mayhap it’ll go away, but really it unremarkably comes back. And so, portion of the dilemma is non only do nosotros have these bacterias that colonize inwards our lungs, but because nosotros convey so many antibiotics through the years nosotros in addition to so go medication-resistant. So our bacterias—this is where it gets really scary—they go resistant to all antibiotics. And that’s really when we’re looking at lung transplant, um, you lot know, in addition to really looking at CF becoming a fatal disease.
For example, my story is-- a yoke of years ago, I became resistant to all oral antibiotics. So, when I used to acquire sick it was like, “Oh I tin go on Cipro, I tin go on Bactrim, whatever,” in addition to ii weeks—I’d live on fine. Now it requires going inwards to the hospital, getting a PICC line, which is similar a temporary IV, in addition to for ii weeks I’m doing round-the-clock IV treatments.
[0:10:30]
Jonathan Singer: And so why would [Liz coughs]—Are you lot clearing your lungs now?
Liz Shuman: [laughing] Yeah! Exactly.
Jonathan Singer: If I was interviewing somebody without CF, I’d likely edit that out, but—
Liz Shuman: Right.
Jonathan Singer:--this is portion of the story, right?
Liz Shuman: Exactly! So, you lot know, it’s funny because I tin retrieve being, mayhap similar nine or 10 years old in addition to my family, they would convey us to church building every Lord's Day in addition to my friend who’d live on upward inwards the balcony, she would plow around in addition to go, “Oh Elizabeth is here.”
“Oh how do you lot know?”
“Oh I tin hear her coughing.” You know? It’s [laughing] nosotros tend to coughing a lot. You know, a lot of people volition say, “Oh”—like, people who don’t know I withdraw hold CF—“oh you lot withdraw hold a mutual frigidness inwards the summertime?! That’s so weird!” I’m like, “Yeah, I know, weird, right?” [laughing]
Jonathan Singer: Oh yeah, if only it were a mutual frigidness inwards the summertime, that would live on great.
Liz Shuman: Right.
[0:11:17]
Jonathan Singer: Okay, so what sort of things would nation you lot inwards the hospital?
Liz Shuman: Well, pneumonia. Any type of lung infection I have. So basically, I culture… some pretty mutual CF bacterias powerfulness live on pseudomonas, staph, MRSA. I withdraw hold colonized pseudomonas in addition to staph inwards my lungs, so I e'er withdraw hold them inwards my lungs. Which sounds sort of crazy, right?
Jonathan Singer: It sounds really crazy that, fifty-fifty when you’re not, similar symptomatic, you’re merely walking around alongside that.
Liz Shuman: Exactly. Exactly. And so, pseudomonas is ane of those bacterias that researchers are really interested in. Like, why are CFers—I would state likely 80% or to a greater extent than CFers withdraw hold the pseudomonas. And it’s really hard to process in addition to it really causes a lot of problems. So that’s definitely ane bacteria that they’re really studying in addition to trying to acquire a improve concur of, in addition to sympathise better.
[0:12:16]
Jonathan Singer: And so after ii weeks inwards the hospital, you’ve been getting antibiotics in addition to that sort of stuff, in addition to it goes away?
Liz Shuman: No, I mean, I spend—
Jonathan Singer: I mean, non the bacteria, because that’s e'er inwards you, but like, the symptoms? What happens at the end?
Liz Shuman: Yeah. So, basically CF is something I withdraw hold to care every unmarried day. So when I was a trivial miss in addition to I was diagnosed, my mom, every night, would sit down me downward in addition to withdraw hold to pound my dorsum for similar a one-half an hour. I hated it. But my mom was like, really sweet, she would e'er say, “I’ll give you lot a trivial massage afterward” in addition to that was my vantage for putting upward alongside her banging on my back. I mean, I would withdraw hold like, big bruises on my dorsum because--
Jonathan Singer: That was serious banging.
Liz Shuman: Yeah! She was, you lot know, nosotros withdraw hold really thick mucus, in addition to so you’re banging your lungs to effort in addition to acquire it moving. Because if you lot don’t displace it, that’s when the bacteria really starts, you lot know, staying in addition to your lung business office starts going down. We wish to effort to acquire rid of that mucus as best nosotros tin in addition to acquire it moving. So “airway clearance” is likely a term that people withdraw hold heard of when it comes to cystic fibrosis. And airway clearance used to live on “postural drainage.” That is what the term was when people were hitting our backs.
Now, what’s really interesting: When I was younger, at that topographic point was no such affair as an adult clinic. Because when I was diagnosed the life expectancy was twelve.
Jonathan Singer: Oh my God, in addition to you lot were seven. Is that when you--?
Liz Shuman: Yup. Yeah. Uh-huh.
[0:13:48]
Jonathan Singer: So when you lot were seven, your parents heard, “She could live on dead inwards 5 years”?
Liz Shuman: Yes. My dad really had had iv cousins inwards ane family, at that topographic point were iv kids in addition to all iv kids had CF. And they all had passed away at an early, early age. So my dad’s recollection of CF is that non only is this a chronic disease, this is a fatal disease. And so, um, so when I was diagnosed the life expectancy was twelve. Today the life expectancy is thirty-eight. That’s huge. And that is absolutely, no questions asked, a straight consequence of people making donations to causes for cystic fibrosis, in addition to all the doctors in addition to researchers who’ve been, as I reckon it, merely miracle workers. If it wasn’t for them, I would non live on live today. And I know that. And so, when I had gone to college was really the get-go twelvemonth that adult CF clinics really opened upward inwards the United States.
[0:14:55]
Jonathan Singer: So wait, so-- what do you lot hateful yesteryear “adult CF clinic?” Just a identify that treats adults alongside CF?
Liz Shuman: We had—yeah!—I was, fifty-fifty inwards my early twenties, inwards college, I was soundless going to the children’s hospital. I was inwards the children’s unit of measurement when I would go inpatient. You know, it wasn’t an adult disease.
Jonathan Singer: Yeah. And the trivial robes likely didn’t tally you lot at all.
Liz Shuman: [laughs; coughs patch laughing] Right!
[0:15:24]
Jonathan Singer: So you’ve grown up—or CF has grown upward alongside you.
Liz Shuman: Yeah, I e'er state I’ve been riding the moving ridge of CF technology in addition to advances. I withdraw hold merely happened to live on hitting the life expectancy—as I’ve been getting older, the life expectancy has been getting older. So hither I am, thirty-seven-going-on-thirty-eight, in addition to the life expectancy is thirty-eight, so—
[0:15:48]
Jonathan Singer: So wait— what is that like? To withdraw hold a affliction where the life expectancy is like, your age?
Liz Shuman: Yeah. Well, I’ve e'er thought that growing upward alongside CF has had a silvery lining for me because I grew upward alongside a peachy appreciation for life, in addition to I think it’s a really especial affair to fifty-fifty live on a kid, a teenager, a immature adult really appreciating each moment, you lot know? The moments I tin appreciate are merely some likely really silly, ridiculous moments to someone else. But to me, it was like, “Wow, I’m hither doing this.” I really retrieve beingness at, like, a fraternity political party inwards college in addition to just, like, looking upward to God in addition to going, “Thank you, God! This is awesome!” The floors are disgusting, in addition to it’s dirty, in addition to it’s gross, in addition to I was thinking, “Oh, I’m having the fourth dimension of my life.” This is amazing.
[0:16:45]
Jonathan Singer: So you lot were grateful because you lot were merely having a peachy time, and—
Liz Shuman: And I was alive!
Jonathan Singer: And you lot were alive.
Liz Shuman: I was alive! You know, at that topographic point was a existent adventure that I wouldn’t withdraw hold gone to college. You know, I e'er state that if you lot have to withdraw hold CF, you lot wish it how I withdraw hold it. Because the reality is, a lot of CFers aren’t salubrious plenty to go to college. You know? They’re looking at lung transplants, they’re inwards in addition to out of the hospital, you lot know, every month. It really tin live on a really brutal, horrible disease. And so I experience like, ane time I hitting thirty, I sort of realized, “Hmm, I withdraw hold a voice. I’m alive. I tin breathe today, in addition to I’m going to deal for all the trivial kids who are merely fighting to breathe today.” I sort of took it on as this sort of personal mission, of like, “Oh I withdraw hold a voice; I tin really assist the kids who are merely lying inwards bed, inwards the hospital, merely doing all their airway clearance, in addition to merely trying to breathe.”
[0:17:44]
Jonathan Singer: So, for the in conclusion 8 years, it sounds similar you’ve had this mission, to [Liz coughs] promote or increment peoples’ awareness in addition to noesis of CF. What sort of things withdraw hold you lot been doing?
Liz Shuman: Well, you lot know what’s interesting, it sort of unfolded organically. Like, people started coming to me in addition to bespeak me to speak at CF events. And I sort of did one, in addition to they asked me to do a yoke more, in addition to it merely has all unfolded and—
Jonathan Singer: I don’t sympathise why, because you’re non interesting to hear to at all [Liz laughing], you’re non engaging, you’re manly someone monarch of boring—
Liz Shuman: I hear that all the time.
Jonathan Singer: Just kidding [both laughing].
Liz Shuman: Um, but most recently, you lot know, I was inwards the infirmary nearly ii months agone in addition to my friend Nicole had started this Facebook group. It was called, “OutRUN the Odds” on Facebook but turns out nosotros withdraw hold straight off started a non-profit called, “OutRUN 38.” And nosotros withdraw hold this amazing momentum going in addition to we’re able to spread the tidings for CF. I hateful CF is sort of, ane of these weird “orphan diseases.” I mean, there’s 30,000 of us inwards the United States, 70,000 worldwide, in addition to so nosotros don’t really acquire plenty attending from the government. We get, you lot know, NIH does some enquiry for us. But really, all the enquiry comes from individual funding and, you lot know, the everyday people who are willing to say, “Hey here’s 10 dollars,” “Here’s a hundred dollars,” whatever. I mean, I’m live on because of all those people, you lot know. So, it seems like, to me, what I hear from a lot of people is they know what CF is, but they don’t really know what it is. And they withdraw hold sort of heard nearly it. It’s interesting to merely acquire that awareness out there. And I think straight off that we’re living longer, straight off nosotros withdraw hold to a greater extent than of a voice. And oddly, some other interesting affair is CFers are non allowed to live on around each other. We tin really part bacterias alongside each other. So nosotros can’t really fifty-fifty live on half dozen feet unopen to each other.
[0:19:50]
Jonathan Singer: Oh that’s so interesting. So at that topographic point are no CF—
Liz Shuman: So you lot could never do CF camps, you lot could never really withdraw hold CF friends. So Facebook in addition to the meshing allows us to withdraw hold our ain community in addition to verbalize to each other like, “Hey, does this go on alongside you? Does this hap to you?” We never had that before. I never knew whatsoever other CF people likewise my cousins who had passed away. I mean, I just-- wasn’t inwards my world. Now I’m, like, Facebook friends alongside all these other CFers.
[0:20:17]
Jonathan Singer: And what’s that been like?
Liz Shuman: Oh it’s amazing. You know, in addition to I think this is really of import for therapists to know, is that CF tin live on a really isolating disease, because nosotros pass so much fourth dimension like, beingness sick, or… I pass ii hours a twenty-four threescore minutes stream doing airway clearance. And sometimes we’re merely too tired to acquire out in addition to live on social. So it tin live on really isolating. And because non that many people withdraw hold CF you lot sort of don’t know, is it the same? Like, am I on this path? Am I going to withdraw hold this happen? It’s really confusing. So straight off that I hear other people’s life experiences, it’s like, “Oh, okay. That’s what that is!” “Oh! I didn’t realize that that symptom meant this!” And you lot know, it’s a way for us to educate ourselves on our ain disease.
[0:21:10]
Jonathan Singer: So Facebook in addition to other social networks, sounds similar it’s been an amazing connective for folks alongside CF because—
Liz Shuman: Oh Yeah.
Jonathan Singer:—otherwise, it’s dangerous, for you lot guys to come upward together.
Liz Shuman: Yeah. Yup.
Jonathan Singer: I retrieve working alongside somebody dorsum inwards the 90s, and um, the mom had post-polio syndrome. And so she had lost the work of her legs in addition to was losing the work of her arms, in addition to she was homebound, and—this was inwards ’96-97— [Liz coughs] in addition to she said that it was the greatest fourth dimension inwards her life fifty-fifty though she was basically homebound, because at that topographic point were these things called “chat rooms” straight off [Liz laughs] in addition to she could sit down on her computer, right? With the Windows 3.1 or whatever it was, in addition to merely like, connect alongside all these people around Blue Planet that were experiencing the same affair she could. And she felt liberated, empowered, and free—
Liz Shuman: Not alone.
Jonathan Singer:—and non alone. She felt connected.
Liz Shuman: Yeah, and inwards a minute where, otherwise, would’ve felt really disconnected. Yeah, and mayhap scared. And so hither you lot withdraw hold all these people, you lot know, helping you, supporting you. For me, a big fourth dimension that I’m on the estimator is ii hours every day—an threescore minutes inwards the morning, an threescore minutes at night—I am on what’s called my “vest” which is this airway clearance machine, that I didn’t acquire until I was inwards my twenties. I mean, this is a new slice of medical equipment that I didn’t withdraw hold when I was a trivial kid. So, again, portion of becoming an adult alongside CF agency you’re independent. I don’t withdraw hold my mom coming over to my identify every nighttime to hitting me on my back. So I seat on this, it looks similar a sort of life preserver, in addition to it’s hooked upward with, you lot know, these tubes, in addition to it shakes me up. And that’s how I do my airway clearance as an adult, as an independent adult alongside CF. But it takes me an threescore minutes inwards the morning, an threescore minutes at night. And I’m, at the same time, hooked upward to nebulizers so I’m doing my breathing treatments at the same time. And so, it’s really sort of a loud machine. I mean, my newer ane is non as loud. So it’s really sort of hard to hear to the TV or live on doing anything. So that’s my fourth dimension I go on Facebook in addition to that’s when I’m connecting. I’m connecting to people on OutRUN38, I’m connecting to my CF friends. And it’s also a prissy way, when you lot withdraw hold CF there’s a lot of fatigue, a lot of just, downward time. I pass a lot of fourth dimension merely resting, conserving energy. If I know I’m going to withdraw hold a social event, I’m likely laying downward for like, weeks ahead of time, merely so that I know I’m going to withdraw hold plenty unloose energy to go to something that I really wish to go to.
[0:24:11]
Jonathan Singer: And the lack, the sort of lack of energy, or the decreased energy, is that because you’re non getting plenty oxygen because it’s hard to breathe? Is it—
Liz Shuman: Well, nosotros withdraw hold to pass so much unloose energy breathing every day. You know, we’re coughing, um, that’s energy. And to also add together to my breathing problems, I also withdraw hold cystic fibrosis-related diabetes. So my sugars are crazy all day. So that requires a lot of attention, a lot of energy. You know, if your blood saccharide crashes, you lot know, that throws off your whole day.
[0:24:50]
Jonathan Singer: Now, I don’t know much nearly diabetes. There’s tabular array salt diabetes in addition to there’s saccharide diabetes. You said something—you said that at that topographic point was the “salt test” for CF, do you lot withdraw hold salt-related diabetes or sugar?
Liz Shuman: So I have—there’s Type I, Type II diabetes, right? Those are sort of the typical types of diabetes that are alongside your blood sugar. So I have, which is like, sort of a rare thing, which CFers acquire called cystic fibrosis-related diabetes—CFRD. Which is sort of a combination of Type I, juvenile diabetes, in addition to Type II. So, it’s sort of its own monster. And so for me, how it’s complicated my life is that I run really low, depression blood sugar. So I really straight off withdraw hold to vesture this Dexcom, it’s called, which is this implant that I withdraw hold inwards my tummy in addition to it talks to this trivial affair that looks similar a trivial iPod, in addition to it’s constantly reading my sugars throughout the day. And why it’s really helpful for me, is it has an alert feature. So if I’m going too high or going too low, it’s sending off an alarm. So for me, which is really of import because several times I have, without recognizing I was dropping, you lot know, going depression alongside my blood sugars, I was close coma. Like, so depression I couldn’t fifty-fifty acquire to my orangish juice. Couldn’t acquire to, you lot know—and orangish juice is what I demand to acquire out of a diabetic low. So having the Dexcom is having that trivial alert saying, “you’re dropping, you’re going low” so that I don’t hit, you lot know, a near-coma experience. But again, the Dexcom wasn’t available 20 years ago. Again, I experience similar I’m merely lucky to live on alive, in addition to I’m only live on because of all these advances.
Jonathan Singer: All these novel technologies, they’re amazing.
Liz Shuman: Yeah.
[0:26:40]
Jonathan Singer: So really quickly, what is it similar to withdraw hold the vest?
Liz Shuman: So, well, [coughs] the vest is amazing inwards that it allows me to live on independent. [coughs] (On) days that you lot experience similar you’re drowning inwards your mucus, it’s-- I volition sleep alongside it on.
Jonathan Singer: Really?
Liz Shuman: Oh, my God! I’m like, waking upward at iii o’clock inwards the morning, putting it on, because it’s the only way to like, assist displace all that. Again, it’s really thick, it’s really sticky, in addition to so nosotros demand help to displace it all. When I’m inwards the hospital? I vesture the vest six hours a day.
[0:27:24]
Jonathan Singer: So what is—is it squeezing you? Is it thumping you? Is it—
Liz Shuman: Yeah, yeah. All of a sudden, it expands alongside air so it’s tight around your lungs, in addition to looks similar a life preserver. And in addition to so all of a sudden, it has a percussion to it. So you lot tin really alter the frequency in addition to the intensity of the percussion in addition to so, it is really sort of shaking you lot up.
Jonathan Singer: Wow. And when you lot state “percussion” you’re not, of course, talking really cool beats…
Liz Shuman: Yeah… [coughs]
Jonathan Singer: It’s non similar Pharrell is programming the vest.
Liz Shuman: Well, however, I withdraw hold been known to do music videos inwards the infirmary alongside my vest on.
Jonathan Singer: Really?
Liz Shuman: [laughing] Yeah.
Jonathan Singer: [laughing] That’s fantastic.
Liz Shuman: Got to acquire inwards fun, you lot know?
Jonathan Singer: Right? Why not?
Liz Shuman: That’s what I say. [both laughing] Or, I telephone outcry upward my nephew as I withdraw hold my vest on in addition to my vocalization is similar [does impression of vest causing intense vibrato] in addition to I say, [with vibrato] “Hey Mason, I dearest you” in addition to all the nurses start laughing in addition to are like, “We heard you lot out inwards the hallway, that was so cute!” [both laughing]
[0:28:24]
Jonathan Singer: That is hilarious. So you lot decided to go to schoolhouse for social work.
Liz Shuman: Yeah. Yup.
Jonathan Singer: Did your experience alongside CF play into that at all?
Liz Shuman: Well, [coughs] I’m sure inwards some way it did. I e'er knew I wanted to assist people. And I think that was fifty-fifty a portion of me fifty-fifty before I was diagnosed. I tin retrieve beingness fascinated yesteryear Helen Keller in addition to people who were struggling alongside disabilities, in addition to that was fifty-fifty before I had CF. So, I think there was a portion of me that merely is a helper yesteryear nature, but in addition to so to add together the CF element [clears throat] I definitely felt similar I’m headed inwards that direction.
I couldn’t imagine myself doing anything besides, you lot know, social work.
[0:29:15]
Jonathan Singer: So, what is it that you lot think social workers should know nearly CF? About working alongside folks alongside CF?
Liz Shuman: Yeah. That’s a peachy question. So, CF is non merely a affliction that affects our body. But it affects us, you lot know, spiritually, emotionally. Imagine yourself beingness diagnosed alongside this fatal affliction when you’re a little kid. Imagine what that would experience like, to know at such a immature historic stream in addition to effort to wrap your caput around mortality. I tin retrieve beingness a really deep thinker. And non really having peers to quite sympathise the concepts that you lot were trying to wrap your caput around at such a immature age. Or fifty-fifty parents who may experience their ain guilt, their ain denial, in addition to also can’t withdraw hold those conversations alongside you. I tin retrieve spending a lot of fourth dimension merely to myself, trying to figure out what this all meant. The other pieces—it really is a lot of grief work. There are—besides dealing alongside merely life in addition to death—there are a lot of other issues of just, like, basic losses, and non beingness able to go to a political party on a Fri night.
Actually, a really interesting story: My cousin Mike, who had CF had passed away, in addition to left me, like, 5 hundred dollars in addition to said, “I wish you lot to pass it on something fun—not books, non an education—fun.” And so I spent that $500 in addition to booked a trip to Cancun for outflow suspension alongside my college girlfriends, in addition to a calendar week before, I started getting sick in addition to my friends go, “Liz volition you lot please go to the doctor?” in addition to I was like, “No! nosotros are going to Cancun!” And they’re like, “Please, Liz?” This is dorsum when I was totally inwards denial. [laughs; coughs patch laughing]
“Please, Liz? Can you lot go to the doctor?” I go to the doctor, they’re like, “Um, you lot demand to live on inwards the hospital.” And so I was hospitalized in addition to I missed that trip to Cancun. And at the time, that was a big loss for me. So it’s trivial in addition to small, similar these trivial losses add upward over time, where you lot start feeling similar you’re missing out. And as you’re getting sicker, you’re missing out on to a greater extent than in addition to to a greater extent than in addition to more.
The other piece, I think for therapists to sympathise is, when you’re dealing alongside adult CFers, I sort of came upward alongside this term, what I telephone outcry upward “healthy sick.” And Blue Planet really hasn’t institute a identify for salubrious sick people. Influenza A virus subtype H5N1 lot of us alongside CF, nosotros recognize the importance of living in addition to embracing a total life. We want to work, nosotros want to withdraw hold a task where nosotros are able to convey attention of ourselves, in addition to non experience subject on identify unit of measurement members or friends. We wish to withdraw hold a task that powerfulness live on meaningful, but most jobs wish salubrious employees. Where nosotros demand to live on able to go inwards the infirmary a yoke times a year, nosotros demand to live on able to convey fourth dimension off to go to the doctor’s to prevent going to the hospital. So, the workforce really hasn’t embraced a identify for adult CFers yet. And because this is really a novel frontier to really be an adult CFer, we’re soundless figuring this all out. And that has been a huge stress, to think, “Not only do I withdraw hold to effort to convey attention of my CF, but straight off I withdraw hold to effort to figure out how am I going to pay my bills? How am I going to maintain a job? How am I going to maintain wellness insurance? Because I’m going to demand that? How am I going to do all that, and live on sick?” And in addition to so add together your stress, which of course of report causes inflammation, which of course of report is the in conclusion affair whatsoever CFer wants, is to a greater extent than inflammation. That’s all nosotros have.
[0:33:00]
Jonathan Singer: I dearest that term, “healthy sick” because it does apply to many people these days, non merely alongside CF—
Liz Shuman: Right, exactly.
Jonathan Singer: Go ahead.
Liz Shuman: So, for example, when I effort to acquire on some short-term or long-term disability, similar Aflac, or whatsoever of those, I could never acquire approved, because I withdraw hold a pre-existing condition. And if you’ve been inwards the infirmary inwards the in conclusion year, which—I’ve been inwards the infirmary every year!—you can’t approved. And who needs that life insurance, that wellness insurance in addition to that disability more? Healthy sick people! Right? So…
Jonathan Singer: Right, exactly. Yeah. Is at that topographic point anything nearly the Affordable Care Act in addition to the policies that withdraw hold been implemented inwards the in conclusion few years around non beingness able to deny people because of pre-existing conditions, nearly those things that…
Liz Shuman: I think we’re getting better in addition to I’ve heard some other CFers withdraw hold some positive experiences alongside that, you lot know, so I think we’re making progress, but portion of our piece of work is alongside the actual employers. Are nosotros employable? Are nosotros your desired worker? You know, probably not—yet, nosotros want to be. The job is, for a lot of us alongside CF, nosotros are dealing alongside a lot of chronic in addition to persistent issues, but nosotros may non live on on our deathbed this moment, you lot know? And so, that may live on something nosotros withdraw hold to think nearly a—you know—a lung transplant inwards the future, but as of today I don’t demand one. But, I’m soundless going inwards the infirmary every, you lot know, yoke months or years. And so it’s, how do you lot care that chronic illness inwards the workforce?
And also alongside your friends in addition to family, you lot know, it’s beingness salubrious sick—everyone wants you lot salubrious for their business office or their event, in addition to you lot can’t go to everything, in addition to yeah.
[0:34:50]
Jonathan Singer: Well it must be, must live on hard to run across people, although you’re sort of world straight off because of the OutRUN 38—
Liz Shuman: Yeah.
Jonathan Singer:—and lots of folks know you lot as sort of as, you lot know, “Liz alongside CF” but I would imagine that, um, before people know that you lot withdraw hold CF, they wouldn’t know that at that topographic point would live on whatsoever argue you lot powerfulness non live on able to brand it, because you lot look healthy, you’re a runner—
Liz Shuman: Right, exactly. When I went to college, I really said, I’m non going to tell anybody I run across that I withdraw hold CF. This was similar my social experiment.
Jonathan Singer: Wow.
Liz Shuman: Would people similar me for me, in addition to non experience bad for me, right? And so I sort of said, I wasn’t going to tell anyone unless I had, like, a major hospitalization. Which at that point, I hadn’t really, I could pass. And no ane would know I was sick in addition to I hadn’t been inwards the infirmary that much. So I really thought I could go through my college career in addition to non withdraw hold to tell anyone.
And I was at that topographic point for non fifty-fifty a calendar month in addition to had a major hospitalization—you know, fever, hallucination, ended upward inwards the hospital—I mean, it was bad. And so, I told likely nearly 8 girlfriends. And likely until, like, my senior year, I hateful that was really sort of all the people who knew. I mean, nosotros would go, nosotros would live on inwards stealth mode, similar secretly going to the hospital. I had severe episodes of pancreatitis dorsum inwards college—it’s non a pleasant experience. But, nosotros did that all secretly.
Jonathan Singer: Oh my God.
Liz Shuman: So I—you know, it’s interesting a lot of people would live on like, they didn’t know that I was going through that at all, because I did facial expression really healthy. And I think a lot of CFers tin facial expression really healthy.
[0:36:37]
Jonathan Singer: So, if I had somebody come upward to me, in addition to she said, “Oh, you lot know, I withdraw hold CF, I’m salubrious sick…”
Liz Shuman: Yes.
Jonathan Singer: “I’m non sure if I should permit folks know.” What would you lot suggest?
Liz Shuman: Right. Disclosure! This is, sometimes telling people is similar coming out of the cupboard inwards a way, you lot know? It is, it’s this existent individual affair that you lot know is going to alter how people facial expression at you, may alter how an employer looks at you, um, how a potential husband or someone you’re dating looks at you. So it really is that sort of scary experience of, like, “Oooh, okay hither nosotros go!” And nosotros withdraw hold to psyche ourselves upward to tell people. I mean, disclosure of CF is for certain an number that therapists should live on aware of. Absolutely, and it volition live on unique to each person, but, um, that’s a big portion of all this-- how to tell people, in addition to when.
[0:37:35]
Jonathan Singer: So you lot went almost your whole college career without beingness out to most people nearly it. Would you lot state that was a goodness idea? [Liz laughing] Are you lot glad that you lot did it?
Liz Shuman: Um…
Jonathan Singer: I know nosotros can’t generalize to everybody alongside CF, but for you?
Liz Shuman: I mean, I think at that indicate I was soundless really inwards denial nearly what this affliction was, what it would hateful for me, how I would withdraw hold to live on my life alongside it. And so, I think that my denial really was… um, non helpful for me at that time. I think that CFers tin either sort of mayhap go ii ways. One, sort of seeing things negative, mayhap getting depressed or anxious, or beingness overly optimistic and, “This doesn’t touching me at all.” And I sort of hap to live on ane of those “too optimistic” people in addition to I think that was a problem. I think it really—there were many times I tin facial expression dorsum similar being, “Wow, I should’ve totally been inwards the infirmary at that point.” And I merely couldn’t—I don’t know what it was, it was merely I thought that I could merely suck it upward in addition to merely maintain going. And I just, I couldn’t. But it really took me many years to sort of suspension costless of that denial. And that was really friends who really just, were like, you lot know, sitting downward alongside me in addition to talking to me for hours about life “This is real, you lot got to really figure this out.”
[0:39:05]
Jonathan Singer: So mayhap ane of the determination points as a therapist is saying, “Is this someone wanting to sort of live on inwards the cupboard nearly their CF because they themselves are inwards denial—and thence putting themselves at risk? Or, are they sort of accepting of their CF status in addition to what that means, but they really withdraw hold concerns nearly beingness out, for other reasons. And that powerfulness live on an of import affair for someone to suss out inwards this, alongside their client.
Liz Shuman: Absolutely. And I think that maxim that at that topographic point are risks to—health risks—to a someone alongside CF inwards denial is a really goodness point. You know, that beingness inwards denial could really take—could seat a someone inwards the infirmary in addition to convey years off their life. Easily.
[0:40:00]
Jonathan Singer: So, evidently there’s the medical side that a therapist, or a social worker, would withdraw hold to understand, in addition to doing all the service coordination around the medical side would live on important. In damage of, like, the psychotherapy, some of the things that nosotros were talking about. You mentioned other things, similar relationships, in addition to job, in addition to things similar that. Are at that topographic point whatsoever other things that you lot tin think of that would live on goodness for social workers who powerfulness live on doing to a greater extent than of the psychotherapy side than the instance management side?
Liz Shuman: Yeah, I think addressing the identify unit of measurement organisation is really important. You could withdraw hold a CFer who’s non inwards denial, but the whole identify unit of measurement is. How does that impact that person’s powerfulness to acquire attention or, um, you lot know, it gets really tricky because nosotros sort of withdraw hold to depend on people fifty-fifty though nosotros may non want to. And then, does that create a sense of burdening other people, or other people feeling similar you lot are a burden, you lot know? And telling you lot you’re a burden? It’s all those identify unit of measurement dynamics, I think, are definitely something a therapist should facial expression at in addition to examine. And also, the historic stream of the diagnosis. How was the parents’ response? It’s really mutual that CF parents may, um, sort of panic in addition to sort of over-protect a CF kid, non permit them do a lot of you lot know, “normal activities.” CF kids who don’t go to world schoolhouse because a bring upward is too fearful of bacterias. And again, some of that is really reality-based. Some CFers genuinely can’t. Which again, that’s some other loss, which I was talking nearly earlier.
But looking at the woman bring upward in addition to begetter separately, their ain personal reactions in addition to how they responded to the affliction themselves. Whether it was guilt or anything similar that. And also how did they convey attention of that kid during those early years toward adolescence? And then, how are the parents managing immature adulthood? Sending their kid to college? Is the kid feeling equipped to live on able to do that? Do they know how to access hospitals? Do they know what doctors to go to when they’re, you lot know, a immature adult? Do they know how to monastic enjoin a vest? Do they know what CF clinic they’re going to? Also, alongside the life expectancy beingness so young, is at that topographic point a trust? Is at that topographic point some money prepare aside so inwards instance your kid isn’t going to live on able to withdraw hold a career or convey attention of themselves financially, what is the plan? And I think a lot of families, because CF takes so much day-to-day care, like, getting the meds, getting your treatments done—that it tin live on really hard to effort to projection what are the needs going to live on when a person is twenty, thirty, forty.
Jonathan Singer: That sounds overwhelming.
Liz Shuman: Yeah. Right. On top of, “Wow, this is really hard to watch. Really hard to scout somebody I dearest live on really sick.”
[0:43:08]
Jonathan Singer: Were you lot ever at a indicate where your identify unit of measurement was like, “I think Liz is going to die”? And they, they variety of prepped for that?
Liz Shuman: No, I think that nosotros all really experienced a lot of denial. I think CF was something really hard for my identify unit of measurement to verbalize about. And so I don’t think at that topographic point ever was quite that panic. And also I withdraw hold merely been healthy enough that I don’t think I ever alarmed them. Although, there, I did withdraw hold some hospitalizations where I did experience like, “Wow, if I leave of absence correct straight off I would acquire it, I experience that sick.” But I don’t retrieve communicating that to anyone. Again, there’s that, you lot sort of, you’re so sick that you lot can’t communicate, one, in addition to you lot can’t breathe, which makes it hard to talk, you lot know? And you’re going through all this materials internally, that you lot almost can’t state that to your bring upward because inwards some weird way the sick kid is also protecting the parent. You know? Some CF parents may experience their ain depression, their ain anxiety, in addition to so the sick kid somehow ends upward beingness the protecting kid. And so nosotros powerfulness protect the parents from how poorly nosotros are feeling.
Jonathan Singer: That’s a tough position.
Liz Shuman: Right. But again, I think, you lot know, my parents, my dad experienced his iv cousins passing away, so I’m sure they were really inwards melody to that beingness a possibility. Frank Deford, he was a sports journalist. He had a trivial girl, Alex, who had CF. in addition to I wish to state she died around, somewhere betwixt 8 or 10 years old. And he had written a volume in addition to at that topographic point was a Lifetime movie. And that was the only information I had on CF as a kid, was this volume in addition to this movie. And hither this miss dies at ten. And that was it! That’s all I had for information. And that was all my parents had for information. So I could only imagine how scary it was for them to acquire that diagnosis.
[0:45:16]
Jonathan Singer: So what are some resources that are out at that topographic point these days—for parents, for professionals, for people living alongside CF—or CFers, as you’ve been calling them. [Liz laughs, coughs] You know, other than the Frank Deford volume and, in addition to made-for-TV moving-picture exhibit variety of thing?
Liz Shuman: Well, I think… We withdraw hold the Cystic Fibrosis Foundation, which is a peachy resource. They do the Great Strides walks all around the USA in addition to I think is sort of the get-go go-to identify that a lot of people if you lot go online powerfulness see. Nowadays at that topographic point are some really amazing books. There was ane volume inwards detail that I got, likely when I was nearly twenty-seven, that I’ll part alongside you lot the link. And I retrieve that beingness like, “Oh my God—look at all this information! I didn’t know that!” You know, I retrieve it merely beingness like, I soundless go to that volume as my go-to like, “I’m feeling this, what is that going to mean?” It’s sort of helping me predict what is going to happen. I withdraw hold really used Facebook in addition to talking to other CFers as a huge resource. There are a lot of groups that I think parents tin go to. Something to live on cautious nearly alongside some of the Facebook groups, is some of them are, oddly enough, highly offensive in addition to mean-spirited in addition to immature. And so you lot have, like, immature parents alongside a newly-diagnosed two-month-old kid going on looking for back upward in addition to CFers are responding inwards these really outlandish, offensive ways. So, be—I’m merely maxim that to live on cautious of what groups you’re getting into. I withdraw hold institute OutRUN 38 to live on really interesting that a lot of parents of CFers are reaching out to me, bespeak me questions. I e'er experience similar it’s really interesting for people to hear my story because for a bring upward who straight off has a two-month-old, who they acquire this diagnosis, I think there’s so much fright in addition to panic. To hear my story, merely is like, [imitates sigh of relief] “Okay” you know? Allows them to convey a deep breath for a moment—
Jonathan Singer: Right, because you’re successful. You’re alive. You’re able to live on a life that they would wish for their kid.
Liz Shuman: Right. Right, exactly. So, you lot know, but alongside that beingness said, I do withdraw hold to remind people that non all CFers lives facial expression similar mine. You know, at that topographic point are many out at that topographic point who are not making it to 38, in addition to needing transplants. And so I think nosotros soundless withdraw hold a long way to go. 38 is our life expectancy, in addition to it needs to live on a cure. And really nosotros wish CF to correspond “cure found.”
[0:48:11]
Jonathan Singer: Mmm... That’s beautiful. [both laughing] Is at that topographic point anything else that nosotros should touching on? We’ve covered a bunch of things.
Liz Shuman: One other thing. So, some other argue nosotros withdraw hold fatigue, is nosotros really withdraw hold a hard fourth dimension absorbing nutrient in addition to nutrients. And so nosotros really withdraw hold to convey enzymes before every meal. So I likely convey nearly 5 pills before every meal, merely so that I tin absorb the correct nutrition, in addition to plenty fatty in addition to plenty calories. Influenza A virus subtype H5N1 lot of CFers tend to live on on the sparse side. Our doctors are e'er bespeak us to fatten up, acquire fat. Get chubby because as you lot expand inwards weight, it really expands your lungs. So you lot tin breathe improve in addition to your lung business office goes upward alongside an increased weight. So, trying to maintain weight on is something really important, in addition to getting the correct nutrients. I also withdraw hold to convey vitamins. I convey a especial CF vitamin called ADEKs—A, D, E, in addition to K. For whatever argue nosotros don’t absorb those vitamins really well. And so on top of enzymes, I also convey a yoke inhalers every day. I convey some antibiotics. Periodically, similar the Z-Pak, I convey that all year-round. I’m always on that, I don’t ever stop, because for whatever reason, that helps alongside inflammation alongside CFers. I withdraw hold to convey steroids at times. I withdraw hold to do sinus rinses. Influenza A virus subtype H5N1 classic sign that a kid powerfulness withdraw hold CF is nosotros withdraw hold nasal polyps. And so that’s really ane of the get-go signs that they knew I had CF, is I had nasal polyps. And it was like, “Oh, nosotros know what that means.” So, um—
Jonathan Singer: What is a nasal polyp?
Liz Shuman: It’s similar a trivial bump inwards your nose. And so it blocks your olfactory organ in addition to tin really drive your olfactory organ to—if it goes on in addition to on forever—it tin drive deformity of your olfactory organ because—in changing your nasal passages. Influenza A virus subtype H5N1 lot of sinus problems. I’ve had a yoke of sinus surgeries. Because it’s literally all that thick mucus is also inwards all your sinus cavities, in addition to so they literally go in addition to scrape out your nasal cavities. So you’re managing your sinuses on top of it. And so it’s, you lot know, in addition to and so managing the diabetes all day. Insulin if you lot demand that. So merely the regular, you lot know, maintenance on a healthy sick twenty-four threescore minutes stream is a lot. So I think merely for people to know that fifty-fifty a salubrious twenty-four threescore minutes stream for a CF someone is a lot, a lot of work.
[0:50:52]
Jonathan Singer: And as you’re talking nearly it, I hateful it makes sense that if you’re anything but healthy, hospitalization—the variety of, intensive treatment, similar you lot couldn’t do that on your own. You couldn’t care that. If this is what you lot withdraw hold to do when you’re doing well.
Liz Shuman: Right. Exactly.
Jonathan Singer: When you’re non doing well, I can’t fifty-fifty imagine. You merely couldn’t do it outpatient.
Liz Shuman: Yeah. And so, in addition to and so eventually you lot need—it’s similar I was saying—six hours of vest inwards the hospital, which you lot know, that’s a lot of work. Plus you’re doing your IVs inwards the hospital, in addition to all your other treatments. And you’re merely trying to rest. You’re merely trying to permit your trunk relax. Like, a lot of times—this is really likely an interesting indicate for therapists to know: Like, I tin acquire into a way where I am merely getting—I tin experience myself getting sicker in addition to sicker but I’m like, “Just force through it, merely acquire to the weekend, you lot tin residual all weekend. Just maintain it going, you’ll acquire better.” Then finally the MD or I volition brand the decision, similar “Okay, you lot demand to live on inwards the hospital.” And then it’s finally like, you lot click into [mimics sigh of relief] “Okay, I don’t withdraw hold to fight it whatsoever more. I don’t withdraw hold to resist it. Now I tin merely relax in addition to focus on healing.” So there’s something nearly going inwards the infirmary too, that’s similar you lot don’t withdraw hold to deal so hard. “Now I tin merely focus on getting better.” But, for salubrious sick people, that’s also stressful, because straight off it’s at how many sick days withdraw hold you lot added upward for the year? Um, who’s going to pay your mortgage that month? (What about) the piece of work that’s piling upward on my desk correct now? So going into the hospital, as much as that’s [mimics sigh of relief] “you don’t withdraw hold to deal it,” at that topographic point soundless is all those other things that you’re trying to manage.
[0:52:40]
Jonathan Singer: Nothing stopped. I soundless withdraw hold to do ii weeks’ worth of work.
Liz Shuman: Exactly. So for a lot of people alongside CF, for many years I never took a opor-garai because I needed my opor-garai fourth dimension to live on a opor-garai inwards the hospital. I used to sort of joke around, “I’m at Yale Hotel!’” You know? “Going to the spa!” You know, um, you lot know, in addition to that was my “vacation.” That was how my opor-garai fourth dimension was used.
Jonathan Singer: It’s such an interesting reframe. Because when you lot verbalize nearly going to the infirmary [Liz coughs] I think a lot of folks think about, like, okay going to the infirmary there’s an ambulance, it’s sad, it’s depressing, in addition to it’s similar awful, similar life or death. But, you lot know, when you lot say, you lot know, the vacation, it almost sounds similar a coping strategy.
Liz Shuman: Yeah.
Jonathan Singer: To live on like, “You know what? This is something I’m doing for—that is healthy.”
Liz Shuman: Yes. Oh, absolutely.
Jonathan Singer: Like, merely inwards the same way that I powerfulness go to the Commonwealth of the Bahamas for ii weeks—boy, that would live on nice.
Liz Shuman: Yeah. [laughs]
Jonathan Singer: No, I would never do that. But if I did, that would live on like, resting up. Now that I’m back, I’ve got all this energy. Yes, there’s all this other stuff… that’s an interesting reframe.
Liz Shuman: Yep. Absolutely. So um, but portion of the loss is, straight off I don’t acquire fourth dimension to really go to the Bahamas.
Jonathan Singer: Right.
Liz Shuman: Right? So—
Jonathan Singer: And you lot powerfulness really lose your job.
Liz Shuman: And I powerfulness lose my job. Absolutely.
Jonathan Singer: Which is huge.
Liz Shuman: So fifty-fifty when you’re salubrious straight off you’re stressed because you’re thinking, “How long tin I maintain this up?” You know, before I halt upward inwards the infirmary again. So it’s—having a back upward system, having a therapist, I think is really of import pieces at different points inwards a CFer’s journey. So I think it’s really of import that therapists know the ins in addition to outs of it. Because it’s non merely like, “Oh this someone is dying from CF.” There is this lifetime of experiences that may live on hard to navigate when you’re inwards it, in addition to so having someone assist you lot through that is a critical thing.
[0:54:51]
Jonathan Singer: So you’ve talked a trivial fleck nearly OutRUN 38, the Facebook page. Why running?
Liz Shuman: So, running for me has go this affair where of a abrupt my lungs opened upward up in addition to I tin convey inwards a deep breath in addition to I experience strong, I experience powerful, in addition to I experience similar I am beating the CF. Like, it’s—I’m out at that topographic point in addition to I’m imagining merely kicking CF ass. It’s just, this really powerful experience in addition to so, um, about—I think it was similar 2008, you lot know I had been running mayhap iii miles hither or there, in addition to you lot know, I was a gymnast growing up, in addition to a dancer, in addition to so you lot know, beingness active was a really of import portion of my life, in addition to I think a portion of why I am as salubrious as I am. And my parents were peachy inwards letting me do all that, you lot know? But inwards 2008, I retrieve sitting on the beach alongside my friends in addition to I said, “I’m going to run a one-half marathon.” And they’re like, “No you’re not.” And I was like, “I am. I am.”
[56:00]
Jonathan Singer: This is the optimistic portion of your…
Liz Shuman: Yeah, exactly! Right? I’m like, “I am.” They’re like, “Well, if you do it, in addition to so I’ll do it!” And so I ran my get-go one-half marathon alongside my friend Kim upward inwards Portland, Maine, in addition to nosotros crossed the complete line together, in addition to I ended upward going dorsum to the doctor’s in addition to my lung performance had really improved! Which is, the belief was always, you lot know, lung impairment was permanent lung damage, in addition to hither I was sort of making a contrary on some of that lung functioning.
Jonathan Singer: Wow.
Liz Shuman: And it was like, “Huh, okay.” And my doctors were like, really continued to encourage me to run. Which is interesting because a lot of my friends in addition to identify unit of measurement are like, “I don’t know… you lot shouldn’t do that, you’re going to really exhaust yourself. It’s non goodness for you.” And I’m like, “No you lot don’t understand—it is great for me.” So running, in addition to whatsoever shape of practice for a someone alongside CF is non only just, you lot acquire all the regular wellness benefits, but it really is improving our lung functioning. So, running has go for me how I am able to postpone, delay, or preclude altogether a lung transplant.
So I ran that one-half marathon. I had trained for a total marathon, ran upward to 20 miles in addition to and so got sick correct before—two weeks before my actual marathon. So, hopefully, ane twenty-four threescore minutes stream I’ll live on able to do that. And in addition to so I ran some other one-half marathon alongside my blood brother who is an amazing runner. So when he finished he came dorsum around in addition to got me in addition to nosotros crossed that complete line together. And straight off I’m really preparation for some other one-half marathon, which volition live on correct around my thirty-eighth birthday-- which is the life expectancy for CF. So it volition live on a really meaningful run in addition to a lot of out runners volition live on at that topographic point running alongside me. So straight off when I run I merely imagine non only what I’m doing to deal CF but I imagine what that experience is going to live on like, all of us doing that together. So whatsoever shape of practice really is critical for CFers. So its definitely something to encourage. Of course, nosotros all withdraw hold to hear to our bodies in addition to know when to rest—that’s as as important. But for certain go ahead in addition to encourage the CF people you lot know to go ahead in addition to acquire active inwards whatsoever way they can.
[0:58:23]
Jonathan Singer: Of course of report doing it patch making sure they’re talking to their medical providers.
Liz Shuman: Absolutely!
Jonathan Singer:—for monitoring in addition to all those sorts of things—
Liz Shuman: It’s non a exchange for your vest. I learned that ane the hard way.
Jonathan Singer: Oh, did you lot effort in addition to live on like, “I’m non going to work my vest”?
Liz Shuman: Yeah, exactly, I was like, ”Ah, this volition live on like—replace the vest fourth dimension alongside running.” And my MD said, “No, all of that mucous is soundless creeping into all of those little, trivial airways into your lungs that running won’t acquire it out of. You soundless demand to do the vest on top of your exercise.” So, for certain go on to verbalize to your doctors nearly your practice because, like, for me, my diabetes, trying to care my diabetes through running. We also withdraw hold what’s called “mucus plugs,” where all of a sudden, I’m literally clogged, similar blocked. And so you lot literally can’t breathe. And so, that’s happened to me, similar miles away from home. [laughing]
Jonathan Singer: Wait so—wait, what happens?
Liz Shuman: It’s called a mucus plug. And so literally the mucus merely sort of gets jammed inwards the airway, in addition to can’t move. Again, it’s really thick. It’s to a greater extent than thick than the average person, this mucous, in addition to so we—
Jonathan Singer: So you lot can’t breathe at all?
Liz Shuman: Yeah, you’re similar barely breathing. I mean, you’re getting plenty in, but you lot can’t similar convey a deep breath in. You for certain can’t run at that point. It’s stuck. It’s blocked. It’s plugged.
Jonathan Singer: That sounds terrifying.
Liz Shuman: It is! And I didn’t know it was happening to me the get-go fourth dimension it happened. I was like, “What is this?” And I came abode in addition to I threw on my vest, likely for similar the adjacent iii hours, in addition to it was, really scary. I was merely like, “Oh my God what is happening?” And my MD was like, “Oh yeah that was a mucus plug.”
[1:00:02]
Jonathan Singer: So could you lot withdraw hold died there? I mean, do people choke from that or no?
Liz Shuman: I mean, I don’t think you lot choke from it, but it’s for certain a argue people powerfulness halt upward inwards the hospital. If you lot can’t clear that, that tin drive farther inflammation in addition to infection in addition to damage, so the goal is to unplug it in addition to move that mucus in addition to acquire that airway clearance going.
So for certain at that topographic point are risks to running in addition to exercise, but working alongside your CF squad to facial expression at in addition to examine those risks, I think is for certain beneficial because what whatsoever shape of practice tin do to improve our lung performance is definitely worthwhile.
Jonathan Singer: You know, it’s ane of those things it, sort of, seems counterintuitive, right?
Liz Shuman: Right.
Jonathan Singer: People are like, “Okay, don’t revenue enhancement you lot lungs, like don’t do anything that powerfulness stress it out.” But your experience was actually, “No, this is helping.” And I suspect it’s likely something that because you lot are on the cutting border of adult CF-ing—
Liz Shuman: Yeah. Yep! [laughs]
Jonathan Singer:—that at that topographic point are a lot of things you lot are doing that people haven’t done before.
Liz Shuman: Yeah, exactly. I mean, I withdraw hold seen—now that, you lot know, I tin reckon people on Facebook, in addition to other CF people—I withdraw hold seen CF people running with an oxygen tank. Biking alongside an oxygen tank.
Jonathan Singer: Wow.
Liz Shuman: Near transplant, still fighting the goodness fight. And that inspires me. I facial expression at them in addition to I think, ”Oh, God, if they tin do it, I tin do it.”
Jonathan Singer: [laughing] That’s fantastic. Man. Yeah. “This affliction is non going to halt me.”
Liz Shuman: That’s right.
[1:01:45]
Jonathan Singer: What is your goal? With OutRUN 38, in addition to what is it that people tin do if they’re excited nearly some of the things that you’ve talked nearly in addition to wish to know more, in addition to wish to live on a portion of that? How do they do that?
Liz Shuman: So you lot tin go to OutRUN38.org to cheque us out. Or regain us on Facebook, which is OutRUN the Odds. Our sort of line for all this, because there’s so many parts to OutRUN 38 is that it’s “Friends supporting friends supporting salubrious living supporting a cure for cystic fibrosis.” I mean, really, it’s a bunch of friends, or new friends through OutRUN, who are encouraging each other to acquire salubrious in addition to live on tally yesteryear running, walking, and swimming. All people demand to do is log their miles. We’re non bespeak for money, we’re merely bespeak for your participation in addition to your miles. So, it’s a peachy identify for people to acquire back upward for, you lot know, themselves as they’re getting fit. Or fifty-fifty if they’ve—I think ane of the exciting parts of Outrun is I think people acquire so much back upward fifty-fifty if it’s merely their first mile, or they ran one mile. You don’t withdraw hold to live on a marathon runner to live on a runner. You know, you lot seat ane human foot inwards front end of the other, you lot are a runner. So, nosotros back upward the fitness in addition to it’s a identify to verbalize nearly community in addition to friendship. And ultimately it’s a identify where nosotros wish to regain a cure for cystic fibrosis.
Jonathan Singer: That’s great. Liz, cheers so much for taking the fourth dimension to verbalize nearly CF, CFers’ treatment, the experience of beingness a someone alongside CF in addition to a social worker, in addition to for all those insights. I really appreciate it.
Liz Shuman: Well, give cheers you lot for having the fourth dimension to do this.
Transcription generously donated yesteryear Meredith Amshoff, a recent MSW graduate of Boston College, who is currently working alongside Catholic Relief Services inwards Kampala, Uganda, in addition to edited yesteryear Ester Park, an aspiring clinical in addition to schoolhouse social worker from New Jersey.
References in addition to Resources
- Cystic Fibrosis Foundation: http://www.cff.org/
- OutRun 38: http://outrun38.org/
- OutRun the Odds Facebook group: https://www.facebook.com/groups/outruntheodds/
- Today Show (June 22, 2014) Thousands run for an inspiring stranger. http://www.today.com/video/today/55475981#55475981
- Frank Deford on CFF: http://youtu.be/0Xl75VC8pME
- Deford, F. (1983). Alex: The Life of a Child. New York: Thomas Nelson. http://www.amazon.com/Alex-Life-Child-Frank-Deford/dp/1558535527
- Alex: The Life of a Child (1/7) http://youtu.be/ir2biconm-I
- Based on truthful events, 'Alex: The Life of a Child' follows erstwhile 'Sports Illustrated' author Frank Deford in addition to his married adult woman Carole when their happy, all-American identify unit of measurement is rocked to the marrow when their babe miss Alex is diagnosed alongside Cystic Fibrosis. While CF sufferers were almost for certain doomed to an early decease inwards the Seventies, Alex grew into a kid who showed remarkable courage in addition to strength inwards confront of her illness. Her loving identify unit of measurement were quick to rally around her, determined to exhibit the same bravery as the trivial miss as they supported in addition to cherished her through life in addition to struggled to displace on after her decease at the tragically immature historic stream of eight.
APA (6th ed) citation for this podcast:
Singer, J. B. (Producer). (2014, September 2). #89 - Healthy Sick - OutRunning Cystic Fibrosis: Interview alongside Elizabeth Shuman, LCSW [Audio Podcast]. Social Work Podcast. Retrieved from /search?q=cystic-fibrosis
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