Zach on life and CF

In this episode of the CF Strong podcast, Zach talks about his journey with CF, the challenges he’s faced and his experience getting a liver transplant. He also opens up about Trikafta and what starting the medication has been like for him so far.

 

In a heart-warming turn of events, Zach, who is only 13-years-old, poses some questions back to the CF Strong podcast co-host Sam Lefoe, who also lives with Cystic Fibrosis. Together, they bravely delve into the profound difficulties of navigating life with CF. They also talk about dreams for the future and hobbies, before finally offering encouragement to other listeners living with Cystic Fibrosis.

Transcript

Voiceover: Welcome to the CF Strong Podcast. CF Strong covers the successes and challenges faced by those living with cystic fibrosis. You’ll hear first person stories, conversations with health professionals, friends and partners. Just a heads up, guests may share their personal views about treatments and health management, but please remember, this is not medical advice and you should always follow the advice of your clinic team regarding your health.

Sam: Hello everyone and welcome back to the CF Strong Podcast. My name is Sam, and today with me I have Zach. Hey Zach, thank you so much for joining us today. Do you mind just telling everybody a little bit more about yourself, maybe a bit of your hobbies, your age, and what you’re up to?

Zach: Yeah, so my name is Zach Haman and I’m 13 years old and I have CF and my favorite hobby is basketball. I like doing sport and my favorite subject in school is probably science and I like speech and drama. It’s fun and like doing a lot, like going to the beach and having a swim, like swimming in the pool.

Sam: So you’re from Queensland, aren’t you? Whereabouts in Queensland?

Zach: Gold Coast.

Sam: Gold Coast. Ah, lovely. Great spot. And you said you like science. Is that your favorite class? What about science do you like so much?

Zach: Oh, I like doing the potions and like how you can do like elephant toothpaste and there’s all different like types and you got to make sure, you got to listen to the teachers to make sure what you got to put in and not what to put in and you do it in order basically.

Sam: Yeah. Sounds pretty complicated. I was never very good at science. So you said you like playing sport as well. Was it basketball that was your favorite one? What position do you play in basketball? Are you more like a defender or more of the attacker?

Zach: I think probably an attacker even though I’m so tall. I like doing the attackers because like you get to break people’s legs and you get to suit.

Sam: Yeah. Yeah. Yeah. Sounds very detaining. And you said you’re quite tall, so does that give you a bit of an advantage when you’re playing basketball?

Zach: Yeah. For defending, yeah, it’s really good advantage with blocking the ball.

Sam: Yeah, right. I used to play basketball too when I was younger, but I was never that good because unfortunately my height was never quite as good as the other boys’ height. But hey, we tried our best. Now Zach, we got you into the podcast today because you’ve actually had quite the story the past couple of years of your CF journey. So was it a few years ago that you had a liver transplant? Is that correct?

Zach: Yeah, it was three years ago when I had my liver transplant three years ago….

Sam: Okay, so quite a while. And I can imagine that would’ve been a very, very hard time for yourself.

Zach: Yeah, it was.

Sam: Yeah, I bet. So I just wanted to ask you one question about that. Do you mind talking to me about your liver transplant and what led up to that? So kind of the few years beforehand, what was kind of going on and then finally when you got your liver transplant, how did that go?

Zach: Yeah, so I used to take these like medications that like make me go toilet and vomit a lot. I would always have to go to the hospital to do put a camera in your mouth and it would go down and check all your stuff and I didn’t like that. It was really bad.

Sam: Yeah, I bet. So was that kind of before the transplant? So a couple of times before you went to hospital, a few times you got the camera down your throat, so, and then after that, is that when the transplant happened?

Zach: Yes. So after that it was the transplant it, we got the call around probably around 11 at night and so my dad wake woke me up and I was not, I was like, wait, what? Like, I was like, what? And so I had to get ready and I got in the car and I was like, and I was panicking. I was like, like I didn’t want to do it at night because I was sleeping and about halfway I just stepped up and did it.

And so we got to the hospital and we got checked in and I had to stay in bed in a, like in a room in bed just to right wait for the morning. And then at the morning we just got to the doctors and just, just to talk about what it’s like to have a liver transplant. And then the doctors they were doing the surgery came to me and they were putting me into the room where I have to get my liver transplant and they put me to sleep and they did all the work. And then I had tubes everywhere and, and picked lines and I came back from the surgery and went into ICU for two days and then I went to the wardrobe for about that. So I stayed in hospital for around two weeks and then I came back and just started to be me again.

Sam: Yeah, it’s an incredible story. It sounds very, very very hard. I can’t imagine what it would be like to be woken up in the middle of night, drag out your bed to go get a transplant. I don’t know how you could have done that. So you must be a very strong kid. Do you think you were quite a strong person?

Zach: Yeah, I think so.

Sam: Yeah, I think so too. Definitely. So the two weeks you spent in the hospital, how was that time for you? Did you have your family around you? Did you feel quite comfortable with everybody around?

Zach: Yeah, I did. There was a lot of doctors and yeah, so a lot of family and doctors. I actually liked like all the doctors, so there was a doctor and all the student doctors and they would just be practicing and on me and it was just so fun. And when all the physios came in, they were fun as well. And even though physio’s really boring, they make it better cause I don’t really like physio, but at hospital they make it so much fun there.

Sam: Oh, I’m glad to hear that cause I completely agree. Physio is never much fun. Do you have a particular bit of physio you do on your own? Just cause I know myself when I have to do my physio, I will go for a run or go for a swim. What kind of physio do you like to do?

Zach: Like what you said, swimming, dumping on the trampoline.

Sam: Yeah, that’s a good one. My parents got me a trampoline when I was younger because apparently jumping is really good for your lungs…. Who would’ve known. But it’s good fun to do as well. So with that entire journey and that entire I guess would’ve been a little bit of a traumatic event as well. How do you feel about it now? Looking back on it?

Zach: I can’t feel good about it.

Sam: Yeah, that’s good. Do you feel like so I know you said before that you had to go to the doctor’s all the time to get the camera down your throat. Do you still have to do that now or was that no longer a thing?

Zach: Oh, that was just a before thing. After after liver transplant. I don’t really do it anymore. I don’t really go to hospital anymore….

Sam: Oh, that’s great to hear. So are you able to just live a little bit more of a normal life now, do you think?

Zach:  Yeah, I feel like that as well. I can live a normal life and try to avoid hospital as much as I can.

Sam: Yeah. Completely understandable. I get that completely. So what are the so now that it’s a few years afterwards, and you said you’re 13, so are you in your first year of high school now?

Zach: Yeah, this is my first year of high school. So been enjoying a lot of stuff, like going to different classes and not the same class all the time.

Sam: Yeah, it’s a big change. It’s a big transition. I remember my first year at high school was a very confusing time. There’s five different classes you got to get to in one day. It’s easy to get lost. So how do you now that you’re at high school, how do you manage your CF at school? Do you tell your friends about your condition or do you just keep it to yourself or how do you go about that?

Zach: I tell some of my friends about it. So I tell my friends about it and when I, when I have my tablet, so I just have a little container in my lunchbox and I just eat and have my water and then swallow it and then I just carry on with my food.

Sam: Yeah, it’s good way to do it very, very quick and easy. Do you ever look back on your transplant time and, I don’t know, does it make you feel a little bit upset or do you just mainly feel really better for it and a bit stronger for it too?

Zach: I don’t really look back on it sometimes cause it just makes me like, feel upset. Makes me feel a bit upset.

Sam: Yeah. I completely understand. I mean, it’s, yeah, someone going for anyone to go through that would be an extremely challenging thing to do. So, and for you to do it at, so at such a young age’s really testament to your character, you must be a really, really strong person.

Zach:  Yeah.

Sam: So, but with all that behind you now, how do you feel about the future? Are you excited? Like, do you have any grand plans for the next six years or any dreams and hopes after high school?

Zach: Not really. Just probably doing a lot of gaming because I love gaming.

Sam: Yeah, of course. What kind of games are you into?

Zach: Like shooting games west, like punching games.

Sam: Ah, yeah, very fun. I do like a good game myself when I get the chance, but it’s kind of hard to do that when you’re working full time. I can imagine school is the same, isn’t it?

Zach: Yeah. It’s annoying.

Sam: Yeah. So I just wanted to talk to you a bit more about your your journey, because again, as I said, you must have been an incredibly strong person. Just do you have any advice for any other people maybe around your age who would go through the same thing?

Zach: Yeah, probably a few people would probably be going for the same thing. Like in hospital, I think I used to have a few friends when I was younger that had cf, but I’m not really allowed to go near them because they have CF and you’re not allowed to go near people.

Sam: Yeah. Yeah, that is true. Have you had a chance to reach out to them in any other way? Like maybe over the phone or by emails or have you lost contact with them?

Zach: Lost contact with them Now I don’t really chat with people that are CF anymore.

Sam: Yeah, it’s very hard when you can’t see them in person, but thankfully there are ways that you can breach that gap these days with technology. And we now have the CF Strong website as well where we do these podcasts. So it’s a good way for everybody to come together and kind of hear each other’s stories.

Zach: Yeah, it would be, it’s great.

Sam: Well, Zach, you are an incredibly strong person. Is there any other things you want to talk about right now or maybe want to share of me about your story or even any questions for me as well?

Zach: Maybe I have a few questions. How did you handle CF for yourself?

Sam: Yeah, it’s a good question. Because everybody does it differently, don’t they? Myself, I try my best to keep on top of it as much as I can, but obviously it’s quite hard to, to do that sometimes, especially with like, say school and then working as well. But with my CF I try to be as active and fit as possible. So like running lots, going to the gym, going for swims, kind of everything that you’re doing right now. And the other thing is just I guess doing your regular doctor checks, your regular physio, which we both don’t like and things like that. Is anything particular that you want to know about?

Zach: You used to have any like transplants?

Sam: No. So I’m, I guess I’ve been quite lucky in that sense. I do have obviously all the same issues like my lungs get quite infected sometimes. My liver also has a bit of an irregular function, so I’m on medication for that and on medication for my lungs as well. But I have been quite lucky not to have gone down that side, but I have talked to quite a few people who have gone through the transplant process and they’re always like the strongest people I meet, so I’m very, very excited to help share your story and hopefully it can inspire other people going through the same thing. What else? Anything else you want to talk about?

Zach: I’ve got one more question. How are you handling Tri Kafta?

Sam: Yeah, so I got onto Tri Kafta about, I would say maybe seven months ago now. Yeah, back in September of last year. Maybe a bit longer, maybe August. And it’s incredible. It’s really, really, really exciting medication. It’s really helps me breathe a lot better. It makes me, I don’t know, it kind of just takes away some of those lingering feelings of like, like it’s hard to breathe sometimes or you’re coughing all the time and it really just kind of takes away those, those things on the daily, which is quite incredible. So you’re feeling pretty lucky to be able to have access to this. Are you eligible for Tri Kafta? Is that

Zach: Yeah, I’ve been doing Tri Kafta ever. I had it for Christmas.

Sam: Oh, what a great Christmas present.

Zach: Yeah. when I first took my Trita, I felt pretty good actually.

Sam: Walks…..

Zach:  Just feeling like a normal person.

Sam: Yeah. Well I think the best thing is also that now that you’re on track after it’s going to….. You’ll I guess stay healthy for longer…. So it’s a really exciting time and I’m really happy that people are getting access to it, so hopefully everyone will get access to it soon.

Zach: Yeah. But that would be cool.

Sam: So just before we finish up, your story has been extremely inspiring and I’m very, very thankful that you could talk to us about it today. Is there anything you would like to say to the rest of the CF community about how to stay so positive and so strong when going through say, a transplant?

Zach: So hopefully everyone goes well with Tri Kafta and CF and how you’re handling it, like doing Bronchitol and their tablets and try and stay healthy and pretty good. So stay healthy and be strong and don’t give up on life.

Sam: Amazing. Thank you so much, Zach. It’s been an absolute pleasure talking to you.

Zach: Thank you. You too.

Voice over:  Thanks for listening to this episode of the CF Strong Podcast. Make sure you subscribe on your favorite podcast listening platform so you don’t miss the next episode. And if you enjoyed this podcast, we’d really appreciate if you could leave us a review. It helps other people find safe, strong, or share us with your friends. Also, a quick reminder that the views expressed in the CF Strong Podcast may not be reflective of Cystic Fibrosis community cares viewpoints. The podcasts are designed to share information and provide insight into the lives of those living with cystic fibrosis around Australia. This podcast was made possible thanks to support provided by the Australian government. Thanks for listening, and we’ll talk to you next time.