We're All Insane - Living with Cystic Fibrosis

Episode Date: January 16, 2023

Caitlin shares her experiences living with cystic fibrosis. She details the horrifying way she and her family found out about her diagnosis as a baby, talks about what CF is and its impacts on her ability to be active. She walks through her health decline and waiting for a transplant, as well as losing her best friend to CF. She then talks about the miracle drug that saved her life and moving forward into adulthood. Caitlin also shares the mental struggle of surviving after she was constantly told that she might not make it to adulthood. Caitlin: https://www.instagram.com/cait_obrien_/?igshid=MDM4ZDc5MmU%3D If you have a unique story you'd like to share on the show, please email [e-mail] Learn more about your ad choices. Visit megaphone.fm/adchoices Learn more about your ad choices. Visit megaphone.fm/adchoices

Hey guys, it's me DeVora. I just dropped an all new bonus episode inside my new subscription channel, We're All Insane Plus. This week's bonus episode is called My Brain was slipping into my spine. Listen now by subscribing to We're All Insane Plus inside your Spotify or Apple Podcasts app or go to we're all insane.com. Hi, I'm Caitlin and I have cystic fibrosis. So basically I was born in 98. And they didn't have testing. Well, they had testing, but they did not have the cystic fibrosis testing screenings right when you were born like they do with all the baby screenings.

So basically what happened was after a few days, my parents took me home because everything looked good. And I wasn't keeping food down, like anything. I was always puking it up or something. And so my mom was like, okay, well, something's not right. We're going to bring her back to the hospital. So they did. And come to find out, I had a blockage in my intestine.

And so I got rushed to emergency surgery. I was five days old. They had to remove it. I mean, it was life-saving surgery, so cut it out and everything. Did they know what the blockage was? It was like, it's some like long, science word that I know I'm not going to say right. Okay.

So don't even attempt. Yeah. So it was just like a blockage in my intestine. Okay. You know, they removed it. And then I went into the NICU. I was underweight. And I mean, I guess I was just like sick.

They didn't know why. So I was kept in the NICU for observation and all that stuff. And then they tested the thing that they removed, the blockage they removed. And what the blockage was, which so it was something specific. but like I said, I'm not trying to butcher the name. Yeah. They tested it and they're like, oh, they sat down with my parents. This is very common with, you know, babies with cystic fibrosis.

And my parents have heard of it. But back then, too, it was even less known than it is now. So they're like, what is that? So then the doctors were like, you know, do we have the green light to test her for cystic fibrosis? And my parents are like, well, yeah, yeah. So basically the blockage is what made it stand out. Yeah. Okay.

And I really don't know. I mean, if they didn't remove it, I probably would have died. Right. So there's like a nice, I got a nice little bingo card. Yeah. Like, I have dark humor. I have a nice little bingo card of death ages. I should have died.

And like it's comical to me. So if you laugh about it, it all have those. It's good. So that's one of them. Because if they didn't do it, yeah, probably would have died. I didn't. He wouldn't be here today. No.

Basically, you know, that comes back. They're like, yeah, she has cystic fibrosis. So that kind of starts the whole, like, you know, CF journey or like timeline. So throughout, like, you know, when you're, when I was younger, I don't remember a lot of my young childhood anyways. Like, maybe a lot of people don't. but up until like 8, 9 is when I started remembering stuff. But basically my, with, I can't talk. I never can either, so don't worry, really.

In CF, you can culture different bacterias. And I culture one of the worst ones. So the most common one is pseudomonas. Okay. And I culture vocal dairy sapatia or as they call it like just BC. And that's bad. So there's antibiotics, you know, IV antibiotics and oral antibiotics for infections. And mine is just really antibiotic resistant.

Like there's a select few. So basically that was another thing too, that kind of, marked it like she's going to be like even harder to treat. So cystic fibrosis is a lung disease. It's a genetic lung disease. So, you know, you can't catch it from somebody or anything like that. So basically you need your parents need to have one gene each to kind of put together and fuck you up.

But neither one of your parents have it, right? No. You need two messed up. jeans to make it. Got it. And they each just have one. So then they're carriers, but they're not going to actually have it. Okay.

And so those two had, I don't blame it on them either. Those two had fucked up jeans, and then they just got together and they gave it to me. Yeah. Also, the chance of that, too, is a 20, what is it? I think it's like a, oh, it's a one in four chance that you're going to be actually born with it over being a carrier. So the fucking odds. Right.

There you go. You're the lucky one. I know, right? I'm like, great. So it's targeted as a lung disease. Lung and pancreas is like the two main things. And there's stuff that can scatter off from it. But that's like the main thing.

It's a lung illness. Causes you to have a ton of like buildup of mucus in your lungs and in your whole body. So like. Yeah, all your different organs have just overflows of mucus. And in the lungs, it causes you to cough up heavy mucus. And when it sits in there with really anybody too, like if you have mucus sitting down your chest, you're going to get an infection and it stays. But like people without CF, they can get that up.

CF patients can't. It's just stuck to your lung walls because you have a nice little level of like liquid. It's not like in your lungs to unstick that stuff. But with CF patients, you don't have that so it's lower. Okay. So it just stays in there and causes infections. So do you constantly have to be on medicine? Oh, yeah.

I have, I had a beautiful, like, own little hospital cart of medicine before the medication I'm on now. Because the medication I'm on now is like the only reason I'm alive today. Okay. Because we'll get there. Okay. So that's kind of the basis of it. And CF can be described as much more, and there's a lot that can bridge into it. There's like CF-related diabetes.

You know, some people can get liver failure, kidney failure, because your organs are just working extra hard and blocked up with a lot of crap. So it's like, you know, I guess, you know, as you go on with life, you get what you get. I only have problems with my lungs and my pancreas. So basically, like, I can't eat food without taking pancreatic enzymes. So, like, there's these little, like, capsules. And if I don't take them, I can get a blockage like I had when I was born. And I need to go to the hospital and go through this whole thing.

not a crazy surgery. I haven't had one that bad again. But I have had two blockages in my life and they are painful. Is it like stomach pains or? Yes. It's like. Like you wouldn't believe kind of thing. That was one of the like top three pains I've ever felt in my life.

So you have to take one of these capsules with every single meal. Like even if you have a snack. Yeah. It's like anything with. fats, like a glass of milk. It's like the enzyme count is like I need six with meals, six to five, depending on the meal size, four to three with snacks. Like if I want a glass of milk, it's like two. Anything that has to go down like that. I can have fruit and juice, water, without them. And all CF patients are different with that too. Like the enzymes are completely

different to each patient. When I was little, the enzymes have a certain amount of like lipase or I believe that's a word in something else. So basically like you guys have like digestive enzymes naturally in your body. And that comes from, you know, like your pancreas and stuff. I don't got that. So my pancreas just doesn't have the digestive enzymes to break down my food. Right. So that's what they are. And you work with your CF team from, when you're like a baby because I was taking them and eating solid foods like right when I was out of the hospital like my parents were feeding me applesauce at like two weeks old. Yeah, because of the blanket to prevent that happening again.

They had to get my enzymes down for any food, any formula. So they'd take like solid applesauce, which I'm not really supposed to give a two week old apple sauce, but they'd have to break open the capsule, sprinkle it in the applesauce and feed it to me at like two weeks old for any of my formula or any. foods because if they didn't, it wasn't going to digest. And then, you know, if you don't take them, you can get bowel obstructions or blockages. So like the bowel obstruction aspect would be like, your bowels are going to explode. Your stomach is going to explode inside of you and you die. Right. And I've had two of those. After that removal surgery when I was five days old,

I've had two blockages or bowel obstructions, as they call them. Obviously, my stomach didn't explode because I'm not dead. But it can get that serious. So, but you know when you have them. It hurts. Based on the pain. Really bad. And you just get really bloated and, yeah, you go to the hospital.

And then they, one time they pumped my stomach with like a giant tube down my note. It was unpleasant. I'm sure. And I don't remember what happened the other time. Yeah. So I do have a question. I get, and if you're going to get into this down in the line of your story, that's fine too, if you want to wait. But I was just going to say, like, as far as your daily activities go, like, do you notice that a lot of things that you can't do or, like, that are a lot harder for you?

That's actually, like, the next step too. Take it away. So, you know, fast forward now, going into, like, my. younger times, I'll like try to sum up until I was about like 13, 14, because then I'll hop into like high school and go from there. So in this time period, I was doing a lot of different things. You know, I was young. I had interests. I wanted to do dance, sports. So I was in soccer, softball, and dance. So I was a very active kid. And for having a lung illness, you know, I did a lot.

So, um, I had to affect you at that time? Yeah. That's like it, so I had to stop soccer at like the age of eight because I was starting to play. I think I played like little soccer. So I was like, I don't know, seven when I started. And I had to stop like at like eight or nine. Right.

Around there. I'm trying to think of the age is what I really can't like pinpoint them. But it was just too much running for me. wouldn't be able to breathe and I just couldn't keep up. So that's something I had to quit. I know I was really sad about that. And I continued with dance. And I was kind of just given leniency in some activities when we'd have to do like excessive things that were hard on my lungs. And this did get like progressively worse as I got older and I had to keep dropping things. I played softball for a long time. That's the one I got to really hold on to.

and dance because that one wasn't wasn't too uh it wasn't like constant yeah right and even if they had us doing something constant i was able to like sit out there or something yeah um so i actually played softball from like the age of eight all the way like up in in like almost into high school um so with the whole sport thing you know up back in up into high school i tried out for the or I was trying to try out for our high school team because I was still playing because running base to base kind of gave me a breathing break because it got so much worse around that high school time but um I wanted to do something it's really hard when you have interests and things you love that you can't do anymore because they're getting like ripped away from you because you just like

can't right um so I held on to that as long as I could but I started getting really sick in high school. So that was something. They wanted us to run a mile and I was like, see you later. It's not for me. I was like, I can't run for two minutes. So that's something I had to drop to around that time. But I did drop a lot of activities and things I couldn't do anymore due to my lung issues. Another really important thing, too, that I had to let go of too is when you have cystic fibrosis, you can't be around other people that have cystic fibrosis because you can be around. pass your i can't pass like my lung bacteria as to like you guys um i'm not really i don't know the science quite behind how we can pass it to one another but i could give my bacteria to them

or they could give their bacteria to me so interesting it is i'm not really quite sure like again like the science behind it um so you can't be around anyone that has cystic fiber or cysts because of that reason. Mm-hmm. Because, like, and with my bacteria being so bad, if I gave it to somebody, like, it can do really bad things. Yeah. But I mean, like, if I got pseudomonas from somebody else on top of what I have, too,

I can get really sick. So it's like you're just killing each of them. Then you would have both if you were to get that. Okay. And I had a good friend of mine, which she's still a good friend of mine to this day, too. Her name is Sarah. we before the whole five feet apart I've seen the movie yeah so it's actually six feet but they do what they will um so before that became a thing because when I was younger me and

Sarah would have like play dates and stuff before it was a problem we never passed bacteria as to one another that never was an issue but um you know that became a thing and And then that's something else that got ripped away from me too. And it's hard, harder now than it was back then because I didn't quite understand. It was just like, you can't really, you know, see Sarah in person anymore. And I was confused. I'm not sure why I was young. And now that's, you know, it's happening to me in my older life too.

Trying to have relationships like that with friends that I can't have in person because of that. And it really sucks. And it's really lonely. and especially like growing up like growing up with an illness like that it's like you don't have people to be there and support you like us like in person like we can talk to each other over the internet but it's so different to you know be able to have someone with you in person being like oh yeah we're going through the same thing so it's a very like lonely disease and it's like that's done a number on me too because it's like no one is going to understand

what we're going through except for like each other. And I mean, you have the outside perspective. Like my mom and dad, I do feel for them having to watch like me grow and their child like be very sick. Right. But it's like, it's like, you know, they're not going to understand. Yeah, like they experience it with you,

but they don't have it. Yeah. You know, it's like they're going to have that. Yeah, like they're going to have their experience and I'm going to have mine. But they're still different. It's like you're not going to feel what I feel physically. Right. When I know other people are feeling when I'm feeling physically.

and we can't, we can't do anything about it. Yeah. So that's lonely. It's another than that got taken away. So that's kind of like what happened in that aspect. That was a lot of stuff I couldn't do or stuff that got taken away from me at a very young age. Other than that, I lived a pretty normal younger life.

Got to hang out with my friends and do whatever. I mean, well, I guess like some time got taken away from me too, because with CF you need to do treatments, like breathing treatments. So, you know, like nebulizers. If you ever had to do like anything, like out with the pods for like or the pods with the little cups for like asthma. Yeah. So how often do you have to do those treatments? Oh my gosh. Those were like they've always been for me three times a day. Okay. Like 30 minute sessions three times a day when I was little. And also with CF2, you have of this vest. So like think of like a life vest. You strap it on and it blows up and it just shakes

you. Like just shakes your chest. And that's to help with the mucus, like break it down kind of thing. Yeah. So like that helps like loosen it up. And then like to help like break down the mucas and stuff would be like more like the meds that you put into the nebulizer. So that took up a lot of my time too. So I guess that's something else that was taken from me too. Because that was always a very important thing. If you don't do it, you're going to get. keep getting sick and then infection after infection. And the more infections you get, the more lung scarring and everything that you're doing and the more lung function you lose and, you know, the...

Yeah. So if you were doing it three times a day, was it morning, midday evening? Yeah. So were you having to do it when you were in high school? Were you having to like, did you go to the nurse to do that? Or was that something? Like, how did that work? Before school, after school.

and like dinnerish time. Okay, so you wouldn't do it when you were at school. No. Okay. Because when I got sick enough, because when I got older, you know, it moves up to like four or five times. Okay. So now you have to do it more than you did. Okay.

And so that. One more question not to interrupt. Is that kind of how this is? Like with age, it gets worse? Yeah. It's like, well. Or it depends. I guess, yeah, it depends on your like severity, I guess, too.

But it's always just a progressive disease. I believe regardless, I can't really like speak for others. I know there's like, but everything always just kind of progresses. I mean, everybody ages and everything kind of, you know, slows down and gets, you know, older. So it's, yeah, it's usually very just progressive and things just have to keep getting up. It's like medications, treatments and not a lot happened. Okay. Within my, like my young ages, like I was in and out in the hospital a bit.

Right. But that's just daily, like, routine, like, tune up type of deal. And my tuneups, like, a car. Like, when you say that, do you mean, like, adjustments of medicines and things like that? And those, like, like, I used that only word myself with my family to be like, tuneups are going to have a tune up. So you go into the hospital. I was in the hospital at least once a year from when I was one years old up until high

school when it got, like, pretty bad. And I was in there way more often. But so you'd go in for like tuneups and that's basically just like IV antibiotics for a certain amount of time, whatever your clinic felt was necessary to just get your shit straight. Okay. In your, you know, lungs and stuff like just, yeah. So that's what that would be. Okay. So it's just, you know, frequent hospital visits.

So shit hit the fan. I missed a part actually. Go ahead. I'm going to back try. You're okay. So when I was 10, this is actually because it's important, this is very important. So when I was 10, I was still very underweight and like not gaining that. I couldn't keep weight on.

That's a common thing with CF2 is not being able to keep on weight being a small thing. So my team pushed for a feeding tube. I don't know if you've ever heard of those, but they're like, okay. So they... You can still explain it anyway. Yeah, there's two different kinds. I don't... I'm not really sure which one I had specifically. But, you know, I had to get that place to when I was 10.

I never really used it. I never wanted it. I was like, don't give it to me. But I was like 10 years old and like 50 something 60 pounds. So they're like, yeah, then no, this isn't working. They wanted me to put on 20 pounds first. So then they placed the tube. I used it a few times.

Every time I used it too, I would just throw up. So I would wake up in the morning because I do feeds through the night by this machine that just stood by my bed. And like it would go into your body as you were sleeping? Yeah. You just like attach this like tubing to the feeding tube. And while I'm sleeping, it's just like I'm getting extra calories. Okay. Because I couldn't put weight on with just eating myself.

Right. And in the morning, you know, I just throw up anyway. So it didn't even matter. And that made it even more annoying. That whole time period of my life was so frustrating. Yeah, I'm sure. It's also probably just not comfortable. Like it doesn't feel natural, I feel like to the body.

It didn't. I'd had this like tube thing just sticking out of all. And like being a we, I think you could relate to this also. Like just being a young teenage girl. With something sticking so far out of like your shirts and stuff. It's like I couldn't really wear any like tight fitting clothing so everybody's going to see it. It would leak like stomach acid over my shirts. The shirts would get ruined.

It was just an awful time. So I got it removed. How long did you have that in for? I'm Anna Garcia, host of True Crime News, the podcast. Every week we bring you in-depth coverage on cases making headlines as well as those that go under the radar. Tune in for murders that defy explanation, mystery seeking exploration, and shocking secrets that will leave you breathless. Each week, we honor the victims by going beyond the salacious in our search for justice.

Crime never stops, and neither do we. Listen to true crime news available now wherever you get your podcast. Three years? Wow, so you had it for a while. Yeah. Okay. They wouldn't let me get it out. Even though you were throwing up?

Yeah. Okay. Would you only have it? They were looking out for the best. Right. Would you only have it kind of? giving you those extra calories when you were sleeping or would kind of, you would like use it during the day as well?

I never used it during the day. So just at night? Just at night. And during the day you would eat your own food. Yeah. Okay. Because I guess that wasn't enough. Yeah.

So you had it three years and then you got a taken out. Yeah. So I got it taken out right before I got into high school. And I kept putting on the weight too. Like they asked me to. They wanted me to be in a comfortable weight. So they wanted 20 pounds. I gave them 20.

And then when I was like, all right, take it out. they're like, well, we're not, we're not going to just yet. I'm like, what do you mean? Like, it was such a frustrating time in my life. Right. And like growing up and all that stuff and like now stepping into high school, I told them, I was like, I don't want this going into high school. I already had to deal with it for this long. Like, I want it out. And so my weight got to a comfortable enough point where they were like, okay, if you really want to, we'll take it out. I go to get it out and it's supposed to be you can just pull the tube out and then you just have this hole in your stomach but it's supposed to just close up.

And they're like sometimes that won't happen and we'll have to surgically close it. And yeah, that didn't happen. The whole didn't close. No. So once again. I'm in my freshman year of high school. Okay. And.

You got the unlucky court again. Yeah. Got it. I'm a freshman year of high school. And this was even worse because like I said, like it would leak stomach acid onto my shirts. But this time around it was even worse because I had this hole. Right. I'm walking around and like it would just leak out stomach acid so bad that it covers like this whole bottom section of my shirt.

And then starts leaking down onto like my like pant like belt area. So it would ruin my shirts in my pants. I'd have to call my mom. go to the nurse and she'd have to come get me. I'd have to go home. And then sometimes it hurts too. It burned my skin because it's stomach acid. So at this point, excuse me, at this point, I'm like, I don't even want to go back to school.

I'm just going to stay home. I'm in pain. My shirt's ruined. I'm like, no. Right. And probably also the maybe not anxiety, but the worry that it's just going to happen at any time. It's embarrassing too. I'm a freshman in high school walking around with a giant like yellow stain on my shirt.

And I'm like, I don't want to be here. Yeah. So that happened. Then it got surgically closed a few months. I had to deal with that for a few months. But this is where I can like branch into my health starting to really decline. Because I'm, so I got into my freshman year high school. I was dealing with that.

issue. But within like the second week of high school, I had to leave and I was gone for like almost a month because I, you have lung function. Well, everybody does. With CF, your lung function is a important factor. At this point, I think I started high school with like a like mid-60s, low 50s. And you want to really try to hold on to as much as you can. And lung infections cause that scarring and cause your lung function to drop and drop and drop. And so, yeah. So my second week of high school, I got really sick, had to leave.

And that's like, I'm missing on a lot. I was also in a career tech high school. So that's another thing I missed out on as well, actually, because I really wanted to take a career tech computer class, but you need to be there. And they tried making accommodations as much as they could. I'm glad they didn't, though, because I was out so much in high school that it's like I would have failed.

I wouldn't have been able to be there and pass, and it's something you need to be doing in person. So that's another thing, too, that got ripped away from me and I wasn't able to do because I was, sick all the time. So, you know, I'm out. I'm doing one of those tuneups. I'm gone for like a month. And that started to be a very constant cycle at that point in my life where it wasn't even like, I wasn't even making it to a year anymore of like how I was saying you had like when I was little, it was the year gaps. It wasn't even being like that anymore. It was always a goal with like me

and my dad to be like, oh, I'm going to make it to a year without a tune-up. He's like, yeah. Nope, never did. Nope, never did. So how often were you going at this point would you say? It was like in high school, I'd say like between like seven to like maybe like 10, I would never hit a year. So it'd be like every like seven to 10 months. And when it was really bad, it's just started getting even less. So like like maybe like five. Five being the least. So those were just getting more constant. Yeah. And the meds were getting stronger as I kept going in like the IV medications,

just different ones and stronger doses. And that happened a lot throughout high school. And that was basically just the pattern of how it was while I was going through high school. And along with those treatments as well. But with the treatments, when I started with three, a day as a baby and being younger, it's now going up to like four a day. And that's, with four a day two, I had three nebulizer treatments I had to do in that one treatment. So the treatments really aren't 30 minutes. They're like an hour and a half of sitting. Those increased. The hospitalizations

increased. So at this point, were you still going to school or you decided to kind of come out and do stuff at home. Oh, I went to school. Okay, so you're still doing it. Yeah, I loved being there. I loved being with my friends and all I really wanted to was to be normal. I was going to say normalcy, right? And be like how my friends were because I didn't have that and I couldn't do that. Right. So that's all I, all I craved. So I was like, yeah, I want to go to school and I want to be in school. And I did graduate at high school. Um, yeah, I'm very proud of it. You should be. Um, um, I'm surprised. I was never there.

Yeah. You made it happen. I did. And my teachers and everybody were very, like, supportive and. Yeah, that's important. Yes. I'm sure there's, like, a lot of schools and places that are just, they don't really care. I've heard some stories and I'm like, yeah.

Even a friend of mine, I know that, like, side note that got an accident, like freak accident, and they were just, the school was just so just, like, not supportive. She couldn't even stay, so. Oh. Yeah. So I'm sure places are just terrible. So that's good, that they, that they were good. you with that. It's important. They were supportive with me from like day one of me being there.

Right. And all the teachers and everything were very protective. And they're like, oh, you're sick, that's okay. Like you missed this test. It doesn't even matter. Right. So I had a few teachers where I would come back from like being sick. They're like, it's fine. You had a test. I slapped a hundred on it. Or I'll just take it off your grade. It's like, you're fine. Just do this tiny little packet or something and whatever. We'll call it a day. So yeah, they've been. really helped me through that. I know. It's the life around here. Terrible. So yeah. So I graduated. I can skip forward now because that's about summing up about how my high school was. Well, throughout high school too, my lung function was dropping consistently. And you have these moments where

it'll come back up and it'll go back down. But you have your baseline lung function. and, you know, I was getting sicker and sicker, so it kept just dropping more. So some CF patients, too, also do not like to disclose their numbers because people do compare. I don't really care. Right. So I don't mind saying my numbers and it just kind of maps out. Oh, gosh. You're okay.

Maps out it for me. So, like, the end of high school for me was, like, low 50s. and when I got sick, it dropped into, like, the 40s. Okay. So we're starting to get in, like, the danger area. So I graduated in 2016. And this one started to get, it was getting bad, but now it's really getting bad. And in between that time, there's nothing to really fill in.

Nothing crazy happened. I had some tune-ups and stuff. Uh, 2018, I got the flu. and I really almost like died. I was like, see y'all later. Yeah, that was another one of those cards, yeah. I got the flu. I ended up in the hospital and I was on like high flow oxygen.

My lung function lowest point was 29. Wow. I tanked really low. And there's some spot. things for me around that time. Probably because, you know. So I remember with CF, you, there can become a time that you need a lung transplant. And I was getting to there.

So my lung function was the lowest it's ever been in my life. 29 is a scary number to be sitting at and I wasn't really improving. So the doctors, I was asleep or asleep. I was laying on my side turned away from my dad and the doctor in the room. They thought I was sleeping. And I don't know why they didn't just talk about it in the hallway. Right. The doctor mentioned wanting to write a referral.

for me for the transplant team in Boston. And I was laying there and I turned around and I started freaking out. And I was like, what the fuck? I was like, what? I'm like, why like? So was that the first time you had heard that you would possibly need a lung transplant? Yeah. So I'm like, oh, God.

I just remember how it like always going through it kind of makes me remember how I felt in those moments. Yeah. And so, you know, that happened and the referral happened. And I got a little better. So I started recovering from the flu and we're like, oh, maybe we don't need to, maybe we don't need to do it. I just think no one really wanted to accept it. And we just thought I was going to be okay. I always bounced back. Like in lung function wise, right? I always bounce back really well and now I just wasn't anymore so I don't know it's a hard thing to accept from my parents perspective and my own and you know friends and family um so that was held off for a few months but then I just wasn't really I wasn't doing good and were you still how long were you in

the hospital for I was in the hospital with the flu for I don't even know Like more than a couple weeks? Yeah. Okay, so it was a good amount of time. Mm-hmm. And then I was able to go home. I ended up going home at some point with the flu, I believe, and then I ended up passing out and falling on the floor in my bathroom at my parents' house.

And my uncle found me, and it was this whole ordeal. I don't remember a lot of that. I just remember that one thing. So then I'm pretty sure I had to go back to the hospital. I think I also ended up, I think it was flu and then I ended up having pneumonia. Yes. So every time you would get like something like the flu or a cold, do you usually have to be hospitalized for that or it just depends on how bad it gets? Yeah.

Before, yeah, before all that time when I was a lot more sick. Yeah. It's like a small cold. Like if someone had a tiny cold that they could fight in like two days, no, it's going to take me like a month. Okay. And then longer to like bounce back again. Right. So my friends are always very cautious.

Friends and family, if they're sick, don't come near me. But, you know, things happen. Yeah. And germs are everywhere. They are. So I'm a big germaphobe now. I am too. Yeah. So I'm starting to recover from the flu.

The highest my lung function ever got after that was like high 30s. and so we kind of just accepted it at that point. It's like, all right, I guess we'll go. So we started seeing the transplant team in Boston. And you have to go through this intro video. Oh, my God. It's so, it seems so insensitive the way they do it, but I understand why they do it because it's,

knowledge and you need to know what's going on and how it's going to go on. But the videos they make you watch are so insensitive and harsh. Right. Cold. Yeah. I, again, this time period of my life, even to this day, is very spotty for me. I think it always will be. But I have highlights that I can remember from it. So we're sitting there on our first appointment day ever. It's me, my mom and my dad. And my parents are really, really like into this video. They're watching the videos so they know what to do when it happens, what's going on. And the life expectancy, like the just median basic life expectancy after transplant is only five years.

And my mom heard that and she just started bawling her eyes out. Right. And I'm like sitting there like, what are you guys crying about? So even after a whole lung transplant, it's still only like five years. You can you, that's like the median of what they'd give you. Like there's people that are thriving with like years into the teens of having a transplant. So it differs like person to person. And what would the expectancy be if you kept the lungs that you had at that low level?

Do you know? I was like one foot in the grave. Okay. So it was kind of like to a point where you needed it. Yeah. It was really getting there. Um, and then if I got sick, because I stayed pretty healthy and pretty stable, um, for a bit. But if I got sick one more time, I, I don't know. I don't know what would happen. I could have died. Right. I could have survived or I could have gotten like an emergency like lung transplant. But, um, the way that transplant works for like any organ is so like picky.

They are very picky and you need to be as healthy as you can be to get it. And is that because of like the surgery and everything like that? It's like surgery because like your body needs to be strong enough to survive that much of an intensive surgery. And then a ton of other factors. The lung transplant is like a whole other thing in its own. So that first appointment happened and it was just all talking and where they thought I was at this point. And then the steps on from there. And this is a very important part to me and very fucking sad.

But I'm going to be okay. So I met my, and it comes back to the childhood stuff too, because I met one of my best friends, Jess, during this period of time. Okay. And she had cystic fibrosis too. She was just as sick as me. Like we could relate to each other so much, like, very similar in what we had going on. And she was doing transplant stuff too.

I won't talk too much about, you know, her own personal stuff. But she was doing transplant to transplant stuff. So was I. So that's another thing that we could be relating to together and do together. and, you know, I can never see her in person. We had FaceTime calls and stuff, and it was so sweet. She's so cute. Love her.

So, you know, we're in this together, and we're doing it together, in a sense, a fun little transplant trip together. So I had to go do my second thing of testing where you go in and you have to get like a heart cath. And that was like a day-stay surgery and stuff and just a ton of different tests. And I was really nervous for that. And she was there for me too. I'm pretty sure she's done that stuff already at this point. And, you know, she walked me through it. And it was great.

She was there for me too along with like my parents. And, you know, fast forward. I kept myself, you know, the transplant team, once you're done, sitting down with them and seeing them, you're kind of just on this waiting list. Well, you have to wait to be listed, and then you sit on another list to wait for the transplant. So my lung function was like mid-30s at this point, but I was staying stable. So they're like, you're on this list, not this one. So I have, had to just kind of wait. You have to wait till you're like practically like halfway in the grave

to actually get it, which makes no sense to me. Right. It makes some sense, but not really. It's like until you're in dire need. Right. Yeah. Um, so I was kind of on that one. And then I was waiting on there. And in between that time period, Jess passed away. I'm so sorry. And it's okay. I might shed like one tier, but I'll be okay. And it's just crappy. That's really crappy. It gives me really bad, like, she was one of my best friends. So it gives me really bad Survivor's guilt.

And we were really in, like, pretty much the same position. All CF is different, and nothing is ever going to be the same. And she had different problems from me, but it was just so similar. And we were in, like, the exact timeline position with each other that it's like when she pass on like why right it's like it's anger confusion it's like why did she have to go and like why am i still here and i've lost a few other people that i've known to cf a lot of people have passed away it's a illness that takes lives like that just doesn't fucking care so um yeah i'm just i'm just Now I have to like live with that.

And I still, I've gotten better with it now. I don't quite feel the whole Survivor's guilt thing anymore. But again, too, it's like, we're in the same position. And I try not to compare, but like, why her over me. Right. And so I had that to deal with. And after that, I kind of felt really just down. crappy and I was like I don't want to do this anymore like I don't want to do transplant

anymore like I just don't care that was like a side thought because I really did always just take care of myself I never really stopped but um yeah she's very important to me so I wanted to talk about it but she's a that was really rough especially in such a hard time of my own personal life absolutely and then that. So now getting into the brighter side of stuff, throughout this little time period, they had medications come out through Vertex that was like trying to help

make CF less, like make it manageable. So I was on, Simdeco was the first one I ever tried. Like a few years back, there's not much to say about it. I don't really remember it doing much. And then I went on Orcombe. I was on Orcombe during this period of time through my transplant stuff.

And I think that was a part of something that kept me kind of stable because it did a little bit. I think it kept me stable. Right. Like, you know, in those 30s, 40s area. And then, something like, I don't know, like life happened really strange after this and it all takes a beautiful turn now.

So all that stuff happened with Jess. I was working on just trying to get better. There was talk in the air about this new crazy medication that's coming out like a genetic modulator. you really can't say much about it because it was in trial testing. And me and actually Jess was still around a little bit when it was in trial testing because we talked about it a little bit. And we're like, oh my God, it's going to be great. So that's another thing too that like hits me. I'm like, come on.

Right. So I did one more tune up three years ago. I did one more tune-up. We really went full in, did a nice little mix of like three different antibiotics for like three weeks, like three, four weeks. And my lung function just shot up to 51. Like that hasn't happened in so long. So I've been struggling, going through this transplant stuff. for like so long and then out of nowhere my after this tune up right up to 51 and then so at that point

they're like you don't even need the lung transplant well I was still on this like back right like just in case kind of thing yeah because I'm not on the waiting list but just on this on the back burner yeah um and so yeah I mean that happened and I kind of stayed stable for the next like few weeks because there was this with that new medication or not yet not yet okay so this is with the concoction that they made they hit me with that concoction and they're like we want to get you to your to the best point we can get you at to start this new medication and i was like whatever i have much hope i'm like let's whatever yeah do what you need to do at this point i'm like whatever. So we do that. That happens. And then tricafta is the medication that came out.

It was showing insane improvements in people with CF. Like when you're when you're born, you do a sweat chloride test. And like if the numbers are like high, you know, it's like indications of CF and stuff. Some people's sweat chloride tests were coming back, like showing no signs of cystic fibrosis. Crazy stuff. Yeah. Like 10 to 20% lung increase for lung function, weight gain, like crazy stuff. Yeah. So it came out and I started it.

And that's how I'm like here now. So my whole thing is because I know like they did that little concoction of stuff and I shot right up. but if I were to get sick without the medication that I have today, I would have went right back down. Maybe even harder. Yeah. So if it weren't for this, like, life-saving medication, that was three years ago.

I wouldn't be here. I would be dead, like for sure. So after they started that medication, were you still going back for tune-ups? No. So you don't even have to anymore. This is like a whole other, like, section. Wow.

That's crazy. I mean, that's amazing. It is. Thank you, too. Of course, that's great. That really is. It was insane. Because at this point, how old were you at this point when you started, when they introduced

this medication? 20. Okay, so 20 years of your life, you've been dealing with that. But I didn't start until I was 21. And I are 24. Okay, got it. Right, so that was 21 years of dealing with all of this basically up and down. And when you're down, you weren't down for just like a day.

It was like, you know, periods of time. For a while. Yeah. And also just like sitting on the thought too of like, oh, like, you know, when am I checking out of here? As in like dying. So quick question before you go into your next segment of life. Yeah.

What do you like what is the typical life expectancy? Or does that also depend? It depends on severity. Okay. And also when I was born, it was like, I think it was like early 20s. Okay. When I was born, because that's what they ended up telling my parents. Right.

But then my case was more severe. So then, you know, that's chimed in too. It's really just like a ballpark type of deal. But it all kind of depends person person. Yeah. But now this medication is wild. So like I'm going to sum that up and then that's kind of like, that's kind of it. Okay.

But this medication is so wild that it's changed so much that children, can take this medication when they're old enough, I'm not sure quite with the age, is to start being able to take it. It can change your whole life. It can give them a full life. I'm probably going to have a full life. Wow. Like I'm probably going to make it well past and like see like my, I want children. So I'm going to probably see, you know, if I have grandkids, I'll probably be able to see them now. Yeah, that's incredible. To where like I shouldn't even be here right now, you know. Right. So. it's really done a toll on the mental health

to like to switch like that. Yeah. No. Like yes and no. Yes. No. I mean obviously there I feel like there's still there's always going to be shit that we feel like can get us down, you know. But I think in general to some degree, at least you're not kind of just like taking the odds of like okay like when is my time. I mean I feel like anybody can say like when's my time but at least now it's like there's some

sort of positive, you know, medication that can really give you hope and give you all these years, you know, which I think is so important. That is positive aspect. It is. It is. I think more of like the negative aspect that I was thinking is. A lot of people do. It's easier to think of the negatives.

It is. It always is. It's just like, I think it was so strange for me mentally to have to rewire my brain to be like, oh, now I can live a full life. And that's what I was saying. Like for 21 years, like, to live one way of just constantly not knowing and being so used to getting sick so often. And then honestly, watching it go down, the older you got, like, yeah, to rewire now almost

even believe, like, oh, there's a medication that can completely change this. Bullshit. You know, like. Yeah. Right. Exactly. Like you're not. Yeah.

But it has. So it's like, I'm still even trying now to this day to be like, oh my gosh, like accept it. Right. Like just take a breather and like let it be. Right. So I'll try to explain this the best I can. I started the medication. And with CF, you cough a lot.

Like, I haven't really coughed much, like, at all. If you met me beforehand, that's all I would do is cough and cough and cough, because you're drowning in eugus literally. So one of the first things I noticed with that medication is I coughed a lot, but I got a lot of stuff up. And then one day I just woke up and I wasn't coughing. anymore. And I would cough so much to the point where I would throw up, or like, it got so bad to the point where I'm like throwing up and like pissing my pants. I'm like from just coughing

and I'm like, this is awful. But anyways, so one day I woke up and I'm just not coughing anymore. And it just, I haven't really, I haven't coughed like that since. And that's wild to me because I spent so much of my life just coughing and it seems very like like not a lot but it was like aggressive coughing. No, I've heard that. Now that you say this, I knew of a girl who had cystic fibroisis and I remember that being I think something that, I don't know if she said it or maybe when I researched it on my own, I mean, this was years ago, that I read that and that it was the same kind of thing that people

would think, oh, coughing's no big deal, but it's not your normal. when you're sick, it's like nonstop and very aggressive to the point that you could throw up and piss your pants and whatever else. Yeah, I actually forgot that I did hear that years ago. Yeah. So that's really something big in my personal life that I was like, wow, like this is a life changer for me. I would get so winded even just walking up like one set of stairs and I was finally able to like walk up multiple flights of stairs. I'm like, this is so cool. I can do the stair-bast.

I'm a superstar now. Yeah. I'm like, okay. So that was crazy too. And like, you're 0-2 stats, you know, when you put the thing on your finger. They were always so low for me. And now I just hold like a normal, healthy O2 stat. And so we had my lung function.

That was always so up and down. And I had that nice start of a 51. I got my lung function up into the 70s. I haven't been in the 70s since I was a toddler. And that shit dropped like that, like real fast when I was young. And so now the fact that I've been able to just maintain that and it's not going anywhere, I'm like, wow. I used to be like, you could see like my bones with my, I lost a lot of weight too.

Back during transplant time too, I was like skin and bone. and losing weight, like, rapidly. And so I put on, like, healthy weight. I look like a healthy person. So with that, was it, did you have more of an appetite? Or it was just, like, kind of keeping things down easier? Oh, my goodness. Yeah.

Okay. The med, like, the med makes me eat so much. Even to now my appetite, it's, like, huge. Okay. So it was, like, an appetite increase in everything. Yeah. And then I was, like, with CF, you can't. can't really keep that weight on.

Okay. But with TriCafta, that was helping me keep weight on. So it's like that's another great thing that came from it too because with weight, with higher weight becomes more lung function too. It's a nice little balance. Right. So you got the lung function up. Yeah.

To like 70s. Yep. Appetite was up. Everything's looking up. Everything's going up. And everything is going down in a good way too. My liver function was something that was concerning to for a bit. So that was like, oh.

But now it's like almost next to normal. Yeah. So that's pretty cool too. Like I'm just a normal human being now. Right. So you don't need to do your tuneups now? No, I haven't had one in three since the last one. Like three years.

Do you still have to do, what were they called? The treatments? No, I don't. No treatments. So literally there's nothing you technically have to do in your day-to-day. Except like pills. Okay. Um, which I do have like a few, like a few of those. Like I have the tri-cafda that I have to take. Um, every day, it's two in the morning and like one at night. Okay. Um, my pancreatic enzymes, those don't go away. My pancreas still don't work.

That's fine. So, and that's, is that for the food? Yeah. So you still do have to take those enzymes every time. Yeah, all the time. Probably for the rest of my life. That's not going to be like, that's like a, I was going to say that by now it's like it probably is like second nature. Like if you eat, you know, you have to do that. Sometimes I do. Sometimes I do. forget though and that I panic. Yeah, I would too. Right. I mean, if you know you have to take something, then you forget, you're like, oh shit. Yeah, I know, I'm rushing. I'm like, oh, yeah. But that's still a thing, but I mean. I mean, compared to the other stuff, right. Yeah, it's like taking like, I don't know, it's just so second nature to me, like you said that. Yeah. It doesn't even matter.

And it's easier. It's less time consuming. I mean, to take a pill is like, you just do it and you move on. Yeah. The whole treatment thing. Excuse me. So the whole treatment thing was a bit of a fight at first with my clinic because the drug was new. And we didn't have a lot on the pulling treatments back aspect. So I'm like, let's not do that. I did it anyway. Because I just felt so good. And like if you were able to feel the difference of like all the mucus sitting in there and just the congestion, the cough and stuff, all of that just.

gosh gone and I'm like I don't know like a completely different person I feel completely different that it's like I just felt personally

like I didn't need them and that they became pointless and I still use them I use my nebs when I'm sick so I did have COVID back when COVID became a thing

Right. It wasn't, it would have killed me probably back then, but I actually took it like a champ. Wow. That wasn't too bad. So now it's like you think if you were to get the flu, it would not at all be the same. I'm terrified of the flu. I don't even want to know. Okay.

But hopefully since everything is so high and good, your body would have a way easier time fighting it all. Probably a better chance, yeah. Flu terrifies me. I hate the winter. The flu season. Mm-hmm. Right. Any illness, terrible.

Yeah, so I think my body would handle the flu a lot better, though. So basically, I kind of just pulled off my treatments by myself and I'm against my doctor. And I was like, well, I'm not going to do it my way. Because I'm doing them all I'm sitting there and like the purpose of it is to cough stuff up and get that mucus out. I'm like, I don't have anything in there. So you weren't even like coughing up anything at that point? No. Okay.

It's like if I did, it's like cleared normal stuff. And I kept telling them that over and over again. And my lung function just kept going up and just kept staying, staying. to the point where I think they kind of just leaned off of it and they're like, all right. Yeah. And then I haven't had confirmation from my clinic to say that TriCafta can cause for you to come off the treatments, but I do have some other friends that have pulled off theirs too and they're like, oh, I'm fine.

Okay. So now I haven't done treatments in like three years. Wow. I'm like, thank God. They were so time consuming. I hated them. That's really, really amazing. It's life-changing. It really is because, I mean, when you have to do something like that and so many of those kind of things, like you said, it's time-consuming. It takes away from your day, from your life. And it's almost like you've, in a way, you've gotten your life back. Yeah, and I'm making up for lost time. Yeah. I missed out on a lot of like get-togethers with my friends. Well, they would wait for me, but, you know, all your friends are together and then you're coming in last. And I had to be last because of the treatments and stuff. It's like, ugh. So that's something I missed out on too.

so I'm just making up for lost time. As you should. That is great. Yeah, it is. It's pretty cool. It's so good. So good. Do you have anything else?

Are you good? I think that's really like, that sums up all of the most of it. No, you really did incredible. I probably going to look back on it and be like, I miss that. But I think I summed up everything that I think is pretty stapled and big and important. No, I learned so much. I think it's incredible. I'm so happy for you, really.

I mean, that is just like, it's incredible to hear. And I think it's, it's so positive because I feel like we don't often hear about like these, I mean, at least not me. Like I don't hear about these like miracle drugs. I mean, I know that there is other ones. But like to actually hear it firsthand and hear your story and how your life was literally changed by that, it's incredible. And I'm so happy for you.

And I'm happy that you are making up for a lost time and, you know, you feel like you can live, honestly, you know? And I just think that's amazing. And I'm so glad you're able to come on and share your story. Thank you. Of course. I was happy to be here. Of course. You did so good, really.