Built to Fight: The Woman Who Raised Me

**Caleigh (Host):**

Welcome to Our Fight to Breathe, a podcast rooted in resilience, community and the power of storytelling. My name is Caleigh Haber and I'm so glad you're here. I was born with cystic fibrosis, a progressive, genetic, rare disease that affects the lungs and digestive system. I've undergone two double lung transplants, spent years navigating the healthcare system, and I've lived through moments I wasn't sure I'd survive. But through it all, one thing has kept me going Community. The fierce, brilliant and brave voices of others who know what it means to fight for every breath. This podcast was born from that fight. 

Our Fight to Breathe is a space to elevate the voices of people living with chronic illness, disability and rare disease. It's a space where we talk about the realities of what we face. The triumphs and the grief, the injustice and the joy, the medical complexities and the very human stories behind them. Each episode will feature guests from all corners of the CF and medical world, from patients and caregivers to healthcare professionals and advocates. Together, we'll explore not just what it means to survive, but what it means to truly live. My hope is that you'll walk away from each episode feeling seen, understood, and a little less alone. Whether you're navigating this life yourself or you're here to learn, listen, or support someone you love, this podcast is for you. Thank you for being here. Let's keep fighting together. 

In this episode, we'll provide a comprehensive overview of cystic fibrosis, from what it is to how it affects daily life. We'll also dive deep into the journey that led to be the creation of this podcast, highlighting the pivotal moments and challenges that shaped my and my family's path. But most importantly, we'll emphasize the power of community and how this podcast aims to unite, inspire and empower individuals and families affected by cystic fibrosis. 

Our mission with Our Fight to Breathe is to offer a platform for people to voice their opinions in an accepting and non judgmental atmosphere. We want to foster a sense of belonging and support, offering insights, sharing experiences and amplifying the voices within the cystic fibrosis community. Each episode will bring you closer to understanding the realities of living with cystic fibrosis, while also highlighting the strength, resilience and hope that binds us all together. 

Now, let's jump into the episode. 
Today, I'm deeply honored to welcome a very special guest, someone who has been a guiding force throughout my entire journey. My mother. She's been my fiercest advocate and my biggest cheerleader fighting for me long before I ever took my first breath. From finding a surgeon willing to operate on me at birth to refusing to give up when I was denied from a second double lung transplant and my first being placed on hospice twice, she has moved mountains to keep me alive. More than that, she raised me to face my disease with honesty, embrace who I am with confidence, and live life fully. Values that she embodies every day in her own life. Her unwavering support and tireless advocacy has shaped not only my survival, but the person I am today. Hi, mom, and welcome to the Our Fight to Breathe podcast. 

Thank you so much for being my first guest on the podcast. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
You're welcome. And what an honor it is to be here. Thank you. 

**Caleigh (Host):**
Today I wanted to start by asking you if you could share about my diagnosis story with cystic fibrosis. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Caleigh was my third born and so I had a little bit of knowledge about pregnancies and becoming a mom. I was at my regular OBGYN having an ultrasound, and he realized that there was an issue. He didn't tell me what it was at the moment. He just suggested I go get a weekly ultrasound at Cedars-Sinai. I was presently at St. Joseph's in Burbank where I had my other two children. Well, I went and did the weekly ultrasounds. I kept an eye on things, and after maybe four times, they said, well, the baby's going to need surgery right at birth because she had a bowel obstruction. 

And so I went out looking for a surgeon that would be able to do the surgery at birth. I found the best surgeon to be one that would only practice, that only practiced at Cedars-Sinai. Well, I had to find a new OBGYN that was also able to deliver at Cedars. Well, as soon as I interviewed everyone and they realized I had a difficult pregnancy, no one wanted to take me on as I was already about to give birth. 

Well, I did go to the director of the OBGYN department at Cedar-Sinai and told them the situation and said, you know, I am going to be delivering here because this is where the surgeon will be. And since then, if your fellow doctors will take me on, I guess you'll have to. And he agreed. And so I had the best OBGYN available and we had the surgeon ready to go. We scheduled a birth date, which was actually June 12th. 

So went to the hospital, they induced labor, but nothing happened. So we spent the night and we tried to get on the 13th and that time it worked. And were born around 4pm and it was a great birth, no problems whatsoever. Caleigh came out, and I had thought of a different name for her. We had a name in mind, and it wasn't Caleigh. And when she came out, she didn't look like the name we had picked out. 

So in about 18/24 hours, the surgery began. And it was the longest, you know, 12 hours of my life. But she came out of surgery, everything had gone well. The surgeon came in and told us not to worry, that everything was fine, but that in his experience, when he went in to remove the obstruction, it was a very tar like substance within her bowels. And that 99% of the time when he operated and found that in an infant, that meant that he had cystic fibrosis. It's the first time I'd ever heard the word. I knew nothing about it, and that was my introduction. So he suggested that the baby have a sweat test to confirm. And we did. 

And that's how it obnced had a CF department. So I guess that was a good thing. We didn't have you there, we thought for the moment. And after the surgery, you were in NICU for about 32 days. 

So that was a very difficult start for sure. But you were always a fighter and you got through it. I didn't leave your side once, and I think. I don't know if that's the norm, but they were surprised to see me always there. And I of course, wanted to breastfeed and pump and, you know, give you everything I could and be there for you. So that's how it all started. 

And went home and your brother and sister loved you to pieces. And we started by giving you enzymes when you breastfed because that was necessary. And little by little, you know, I learned what I needed to do, how to take care of you at. The first few months were a little rough, and I only knew the director at Cedars to go to for information because the Internet wasn't quite up and running yet. Or was it? I wasn't as familiar with it. Maybe it was just happening. But the good news is that after doing a little research, we found that CHOC Hospital in Orange county had the best department for your situation. 

And one day you just weren't yourself. You weren't responding the right way, you weren't eating. There was something wrong. I wasn't sure what it was because I've never experienced, you know, anything with my other kids. So I took you to the Cedars-Sinai and the doctor just said, oh, she'll be okay. You know, come back in two weeks. And I thought, when I went home, I thought, no, something's wrong. This isn't a two week wait and see. 

So went down a CHOC and thank God Dr.Schooley saw you, put you in the ER and hydrated you. I can't remember everything now, but basically she saved your life. You were admitted. I stayed with you when we left there. I was totally educated and we knew how to help you in whatever situation would happen. But that became our CF center, our first one, it was great!

**Caleigh (Host):**

Cystic fibrosis as we know it, and at that time especially was an orphan disease and labeled as a terminal illness.

 
When did you first learn that it was an orphan disease and it was terminal? And how did that affect you in raising me and the way that our family life revolved around my medical care? 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Well, at Cedars, when you were diagnosed positive on the sweat test, dad and I started educating ourselves on what CF was. And the doctor came in and gave us a rundown and said, in your situation, you probably wouldn't live past 10 years old. And that was devastating to hear, obviously. But as always, that didn't mean a thing. That didn't mean anything to me because I knew that, you know, with hard work and care, you would thrive. So that was my initial thought. 

And we treated you just like any other baby, except that we had to give you know, certain meds at certain times and follow certain routines. Dad learned how to do the percussion back then. You would pound their lungs so that the mucus would move and she'd be able to breathe. And we each had our little designated things were good at, including, you know, your siblings. We all just took care of you like we would someone you love and never thought about, oh, what's the result going to be or anything. And you were a fighter from the get go. 

**Caleigh (Host):**
That's something that I talk about a lot in my journey with cystic fibrosis. You and dad really did raise me to be the exact same as Michael and Lauren, my siblings. You guys didn't let me skip school. You guys didn't give me outs on anything. You had the same expectations. From my point of view. It was always, you know, you're going to be in sports just like your brother and sister. You're going to go to sports. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**

Because you wanted to. 

**Caleigh (Host):**

I did. And I was luckily very healthy for most of my childhood and teenage years. But I think that really helped me because it made me, you know, be competitive and running with Michael and wanting to keep up with them and wanting to do the same things as them. 

But from your perspective as a mother, how do you feel like, you know, being on this journey with me has affected you as a person? 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Well, at this point, it's been a long journey. You're 34 years old. Right? So, you know, along the way, we've gone through so many emotions that always with a lot of love in the family and knowing that we could overcome any obstacle, which you have more obstacles than anyone should. But you were always a fighter, and we just weren't going to let you go. 

**Caleigh (Host):**
What are some key moments that really defined your experience as growing in your knowledge? With cystic fibrosis, you know, how did you really educate yourself about cystic fibrosis? Was it the doctors educating you? 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Yes. 

**Caleigh (Host):**
Did you go to the library? Was it pamphlets? Like, how did you really gather information? 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Mainly from the CF center at CHOC Hospital in Orange County? They told me what to do, what you needed. We visited often.

Initially, when you were born, you had your surgery to get over, and were learning everything we needed to do and basically just became part of everyday life. You'd get up, you'd have to always take your medicine with any food you ate. Dad would do the pounding before we would cup like this and do it on your chest. So that was his thing he did. And you liked it didn't hurt you, and you reacted well to it. So it was just done. Whenever you were laying in his lap, it just became part of daily life. Your siblings wanted to be pounded as well. So that was always funny. Yeah, it was a diagnosis, but to us it was, I don't know if we just pretended it wasn't real or what, but we just continued with life the way we knew it. And, you know, your stuff would just be incorporated in whatever we did. 

It didn't stop us from doing anything. Maybe the only thing it stopped us from was vacationing abroad or anything like that, because we always wanted to be near the hospital just in case. But as you grew older, you got healthier and better and you had, you know, your childhood wasn't too bad and you were able to do anything you wanted, basically.

**Caleigh (Host):**
That's true. And I remember even from the age of like, four or five, I was always involved with the Make a Wish foundation, the Cystic Fibrosis foundation, and various organizations surrounding cystic fibrosis and the complications involved in cystic fibrosis. And that really gave me a voice, and it helped me learn how to advocate for myself, mainly through watching you at these events and you really pushing me into that role. Why did you feel like advocacy was so important in my development as a person? 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Well, again, it is important to be aware of not only your surroundings and your life as you knew it, but everything else that's going on in the world. And through your sister. We had started with NCL, which is the National Charity League. And like anything else that you participated in, you wanted to. You were very competitive. And so we would volunteer at different organizations with a wide range of issues. 

You know, whether it was homelessness, whether it was Meals on Wheels, whether it was just reading at the library to the little kids, whatever it was, you went in wholeheartedly. And it was a mother, daughter volunteer situation. 

So I think even one year, we had logged in more volunteer hours than anyone else in Orange County, and we got that award. So that was fun and we enjoyed doing it. You never complained about going and participating and, you know, we wanted to expose you to as many things as possible. 

**Caleigh (Host):**

That's true. 

I think a lot of my memories growing up were surrounding these organizations. And like you're talking about specifically, as I got older, in my late childhood, early teenage years and stuff, were really, really heavily involved with volunteering. And went every weekend, I think probably Saturday and Sunday, we'd do something. And it was a great way for us to bond, I think, you know, you and me. And then I also had things with dad that were, like, separate that him and I did on the weekends and stuff. And I think it represented the fact that when there are people who need a voice, sometimes you can help be that voice. And that has helped me in my advocacy journey with cystic fibrosis.

Because sharing a story can really impact somebody else. I know myself, I'm very impacted by the people that I meet because I'm either educated about something that can help me in my future, or I can relate on a level that brings me this deep emotional bond with somebody that's, you know, this person becomes family. You know, many of our friends with transplants who are like family. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Right. You have to remember back in the day when you were born, you know, they advocated no contact, so two CFers could not ever be together in the same room. And that, I guess, is still true in a way. But you meet with people so..

**Caleigh (Host):**
Well, post transplant, it's different because I don't have the same infections. So I can be. As long as I don't carry the infections, I can be with other people who don't carry the infections post transplant. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
But back then, yeah, pre transplant. It must have been a very lonely disease for you. But you were little and you were so busy with so many things always happening that I don't think you ever thought about it as being lonely back then.

**Caleigh (Host):**

I think because I was so healthy, like you're pointing out, and I was so involved in many social things in school and sports and volunteering and our family, really, I didn't have time to think about it. And it wasn't at the forefront of any of our faces. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**

No, because at that point it was just your medication and percussion. And that was really. That was the extent of it. 

**Caleigh (Host):**
Yeah. I mean, for years, I didn't even do nebulizers or CPT because I did the gymnastics. And you guys would just say, jump on the trampoline for 15 minutes before and after I worked out. And that was good enough. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Well, that's what the doctor said, and that was working. 

You being so athletic and always on the go was, in her case, good for her body, so. And you always like sports, so it was not a question. I think that really helped you. Yeah, until it didn't. 

**Caleigh (Host):**
Well, I think it's also helped me still, because I learned how to be disciplined. I learned how to, you know, communicate with others. There's a lot of important things that I gained from. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
No. But at a certain point, your body kept progressing with the disease, and eventually it was impossible. 

**Caleigh (Host):**
Which was probably one of the hardest things for me in my CF journey was having to stop sports, because that bonded me to relationships that I had with people and friends that I had. 

And it was the thing I was good at. I was never good at academics. I was never good at reading or. I didn't really have many other things besides sports. That was my biggest outlet. And it also bonded me to my brother. Right? Because were always so competitive together. Even though were doing different sports, we always wanted to compete in, like the swimming pool or running to the lamp post in front of our house or whatever it was. But, I mean, at one point, it just wasn't possible anymore once I started deteriorating more.

But you did point out a very good point, I think, about how things have changed in the cystic fibrosis community today. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
The internet must have just been starting. But it wasn't like I could just get online and chat with another mom and see what was going on with her world or how it would incorporate, and I could better myself with you. So I was educated mainly by the center. 

**Caleigh (Host):**
Yeah. And were told when I was hospitalized, if you see somebody who you think may have cystic fibrosis, don't communicate with them. And when we came to the clinic, we'd be at different time slots, so we never passed each other. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Right. A very isolating disease at that time. But I think that's changed and for the better. 

**Caleigh (Host):**
Yeah, definitely, it has changed, especially with social media. We don't have to even be in the same country anymore to talk and relate to one another. 

And I didn't meet my first friend with cystic fibrosis, Joey, until I was about 19 years old, and I went to my first adult center. And it really opened my eyes to the disease and educated me on a deeper level because I was meeting so many people and so many people had different stories, they were different ages. It gave me insight to the fact that it is possible to live longer. 

I'm asked often how I found out that it was a terminal disease and when I knew it was terminal disease, and how that really impacted the way I lived my life as a child.

**Lizeth Bosch Haber (CF Mother and Caregiver):**

I don’t think we ever told you. 

**Caleigh (Host):**
I never knew. I mean, I don't even remember when I found out. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
After high school, when you were in San Diego for the better part of two years. 

So right after high school, you got ill and you spent a two solid years in and out of the hospital. Then you did better the years of. 

**Caleigh (Host):**

The 18 to 28 that I was living inside the hospital more than I was living outside the hospital. 

But despite that, I think you have been one of the biggest components in teaching me that life can be adaptable and you can adapt to your situation. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
That's correct. 

**Caleigh (Host):**
Yeah. Even when I couldn't walk, when I was on oxygen, when I had the feeding tube..

**Lizeth Bosch Haber (CF Mother and Caregiver):**

We still did anything we wanted to do. 

**Caleigh (Host):**
Yeah. You just shoved me in the car and took me here, put me in the seat and took me. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Weut that oxygen tank somewhere, and off went. 

**Caleigh (Host):**
Yeah. Put five in the backpack. And we had to, we had to keep going. 

Being as you've been intimately involved in every step of the development of Fight2Breathe, can you describe to the community the evolution of Fight2Breathe from your perspective? 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Well, I think it was at Stanford, right. When you were going to Stanford, and you were growing as an adult woman, and social media and the Internet was more of a regular, daily occurrence. 

And you've always wanted to help others. So I think that it all started really with you and you're wanting to voice your journey. 

**Caleigh (Host):**

From my perspective, I think it began when were at Stanford and I was told I needed a double lung transplant. However, I was also told that I would need to full time caregivers in order to get that from their requirements, from their center. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
To be listed… 

**Caleigh (Host):**
Yeah, to be listed. And at that point... 

**Lizeth Bosch Haber (CF Mother and Caregiver):**

For an organ..
I don't know if that's true of all organs, but I'm just going to do a little shout out. Everyone get registered as an organ donor. Easy to do. Dmv, you don't have to worry about it. If you think your lungs, liver, kidney aren't healthy. And why do it? Because no one else will be able to use it. You don't know. You don't know what someone else's journey is. And your kidney that may not be working for you could be a lifesaver for someone else. So just register please. 

**Caleigh (Host):**
And you can also register online..

**Lizeth Bosch Haber (CF Mother and Caregiver):**

At Fight2Breathe

**Caleigh (Host):**

And at donate[l](http://life.org/)ife.org

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Yes, exactly. 

**Caleigh (Host):**
But so were told that we needed two full time caregivers and at that point I was sick. You moved up to San Francisco where I was living to help me and it was just you and I really with my health. There was not many other people that were supporting us. 

And I felt like it was going to be impossible to make that happen because I didn't even think you could stop working for three months to take care of me because we had no other support and we didn't have.

**Lizeth Bosch Haber (CF Mother and Caregiver):**
But like everything else in our life, you were given a set of goals in order to be listed and one by one you checked them off, you got them done. 

**Caleigh (Host):**
Yeah, but the realistic point of view is that it wasn't so easy. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Well, nothing in life is easy, but it is possible if you know, give it your all, that's all we could have done. 

**Caleigh (Host):**
Exactly. And that was how fight to Breathe began. It was that I needed to basically fundraise enough to financially support two full time caregivers so that two people didn't have to work and could also support me. And I felt that if I was going to have a transplant, that it was my responsibility. Not meaning that I didn't think you would help me, but it also felt like there was such big weight on you at all times to take care of me. And you were constantly stepping up in so many ways. You would work, you know, a bajillion hours and then drive down to Sanford an hour, see me for a couple hours and drive back, or just drive down just to sleep with me because I was scared to stay in the hospital by myself and then you'd go back home. 

When I was told I needed a double lung transplant, at first I was like, I didn't want to do it. I was very depressed, and you were the person who said, “too bad you're going to do it”. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**

Well, there were no options.

**Caleigh (Host):**

I mean, you didn't give me a choice. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**

Well, there wasn’t any other options.

**Caleigh (Host):**

There is a choice. People can say they don't want to. They don't want to go forward with it and decide not to get a transplant. That's a real option in life. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
It is a real option. I guess depending on what you go through and what age you are and all that. You could have decided that, but you never did. 

**Caleigh (Host):**
Well, I did. You didn't. That's the difference is what I'm saying. 

I did decide that I did not want to do it because I felt at that point in my life, I was suffering. I was very depressed, and I didn't feel like having a transplant was gonna change my life that much. 

And I also felt like I was born with this disease that was going to prematurely take my life. Why should I fight that? Maybe this is what's meant to be in the world. 

However, you really opened my eyes to the fact that there's a life worth living, because you would put me in the car when I was depressed and say, “oh, we're going to Napa”. ”We're going to the beach”. You know, you just shifted my perspective to see positivity. 

And also it was very hard for me not only to go through my own emotions, but see you impacted by how sad I was and how down I was and how. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
That's just parenthood, though, you know, when you decide to become a parent, then you have to love and support your child

Anyway, that's my perspective. And it was always a joy to be with you. 

**Caleigh (Host):**
But. Yeah, and then people started asking questions. Because I think

**Lizeth Bosch Haber (CF Mother and Caregiver):**

We had no idea how big it was going to go. 

**Caleigh (Host):**
But it was like a year and a half of, like, being told I needed to be listed, because, again, I was denied. I was put on hospice issues. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**

You had weight issues..You had different goals that you had? 

**Caleigh (Host):**
Yeah. Weight issues. PFT. My A1C needed to go down. I mean, there was a big paper list of things that I had to accomplish. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Correct. Because again, there isn't enough organ donors. So they don't just give you an organ if you need it. You have to be listed and you have to have a good chance of survival. Otherwise, they don't waste the organ on people that they don't think will have a good chance. And I mean, logically, it does make sense. 

**Caleigh (Host):**
Yeah, absolutely. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
But if everyone was an organ donor, everyone would get a chance. 

**Caleigh (Host):**
Yeah, that's the goal, at least for me, I mean. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
And I think that was another thing that you saw and you decided, well, the more people that are aware, I mean were organ donors just because of the DMV and sure, why not? 

But it really hit home when obviously was our world. And so I can't advocate enough for everyone to sign up and be an organ donor. 

**Caleigh (Host):**
We started blogging. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
I know, I'm thinking what you started art, you were very creative and you started painting as an outlet

**Caleigh (Host):**

And also…to try to sell things because again, I needed to help finance the situation. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Remember the first one? The first one, it turned out great. I wish we wouldn't have sold it because I wish I had it. But it was the roses and were doing a little fundraiser at Ghirardelli Square and you brought the painting as a sign, as a logo as you know, for people to know where to come. And someone said oh I love that I wanted to buy it. And then we decided, oh, *you're an artist*, get the paintbrush. 

**Caleigh (Host):**
Yeah. And I mean you took me to the store and bought everything I needed to just keep busy. But that's who you are. 

I mean if I want to do something, you make sure I can do it because you know, it's important for my mental health. Right? Like you wanted to get the apartment with the window so that I'd have something to look out at while I was laying on the couch all the time. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
We lucked out on that, that was just pure. 

**Caleigh (Host):**
It was luck.

**Lizeth Bosch Haber (CF Mother and Caregiver):**

Exactly

**Caleigh (Host):**

But still, it was great.

**Lizeth Bosch Haber (CF Mother and Caregiver):**
It was great since we spent so much time indoors and you were often too ill to go out. So luckily we ended up with at least a view so it didn't feel like were always inside. 

**Caleigh (Host):**
Yeah, sometimes it was more isolating because it felt like the world was moving on without me. 

But you know, it was depended on the day and depended on what was happening in life at that moment. 

But rewinding back to the evolution of figh2breathe. So I was being told I needed a transplant and that I needed to fundraise in order to subsidize two full time caregivers at and also they told. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**

Oh, I know. And also they told us that we had to live within 20 miles of Stanford. That's I think the thing that really brought to light the fact that we needed money because we needed to rent an apartment. Unfortunately Stanford is like in the area that's so expensive within 20 miles to live at. So I think that's what was the first time were aware of oh, this is going to be a thing. And you came up with the idea yourself. I mean I don't remember discussing it or anything. Next thing I know, we had to Fight2Breath. So it was really your doing. 

**Caleigh (Host):**
Well, we started sharing what was happening in the process because people started reaching out as they heard that I needed a double lung transplant. And because I was so ill, it was becoming exhausting to share information constantly with people - for me. And so I felt like. Because at that point, Fight2Breathe was a website where people could donate to help support the transplant. 

But I took it to Instagram, which was brand new as a blogging at that time. It was like mostly food photos and like a photo with a friend, but there wasn't much captioning. It was still the very early on days of just photo sharing and I started to think, well, what if I just start sharing photos of the journey of how it is to be listed, which was the testing, the pre evaluation for transplant, and then the listing, and then also just infections and being hospitalized. 

And I remember my first post is like, “getting an X ray”

**Lizeth Bosch Haber (CF Mother and Caregiver):**

Oh, iss it?

**Caleigh (Host):**

With just like me, me with an X-ray. Yeah. And then the second one was like bubble tests with like me getting an iv. 

And then I remember sharing about my emotional side of it. And that's what gave me the purpose was because all of a sudden, I wasn't alone. I had been alone for 23 years with this disease, not knowing anybody, and then having one friend, Joey, for a while. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
And Anna (Modlin)..

**Caleigh (Host):**
Anna, I don't think I had met her until like the year before my transplant maybe. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
But she had a transplant, so it gave us hope because we had seen her before and after. 

**Caleigh (Host):**
I mean, there was definitely the Stenzel twins. Like, there was definitely a lot of people who I was gaining hope from because they had survived transplants and many of them were doing well. 

But the other side was that the more friends you have with cystic fibrosis, because it is a terminal disease, you're experiencing loss on a regular basis, which is very difficult. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
And it must be so hard knowing you have the same disease. 

**Caleigh (Host):**
Yeah. I think sometimes it also makes me feel a little bit guilty or a little bit selfish that I am even thinking of myself when the other person passes away. Because naturally you think, yes, like, you do have the disease and that person has your disease, and now maybe you could experience that same situation. So it's a little bit of like a comparison when it happens. 

But mostly it's also survivor's guilt because you feel like it could be you. Why isn't it you? And this bond that bonds the CF community is so strong. I mean, you meet people and they become instant best friends with you sometimes, or you become instant best friends with them because nobody on this earth can know how it is to live with cystic fibrosis except somebody living with it. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Correct. 

**Caleigh (Host):**
I think also getting the support from others really helped in my compliance because it felt like people were looking at me and I was in some way it gave me this sense of responsibility to make it through because I wanted to show other people that it was possible and that they can also live and thrive and have a life after everything that we go through with cystic fibrosis. 

But that helps me because that sense of responsibility also showed me that, you know, if I want to survive, if I want to meet my goals too for myself, have family, get married, travel, all of those things that I had to do it and play it by the book. But over time it's become very easy to do that. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Well, it becomes routine. 

**Caleigh (Host):**
Yeah. But I will have to say I also have a lot less responsibilities now because I'm not as sick. So it's much easier. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Well, you have different responsibilities. 

I wouldn't say you have less, you know, just keeping up with your medications and now being in full control of ordering of, you know, getting the insurance to participate, your appointments, all that is a full time job. 

**Caleigh (Host):**
Yeah. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
And now you're healthy enough to do it. Yourself. And it's a must feel wonderful. 

**Caleigh (Host):**
Yeah. I'm very proud of myself that in the last few years I've really established being my caretaker in a way because I mean, I can rely on other people. I can call you if I need something, if I need help, and I do, do that. But my main goal is having independence. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**

That’s right

**Caleigh (Host):**

That's what I've always wanted. And I've also wanted to not only do that for myself, but to do it for my loved ones so they can have a life that they want. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Well, that’s what the transplant gave you. Transplant gave you the ability to be independent. 

**Caleigh (Host):**
My second one, yeah, my first one, not so much. 

How did you balance being a parent and having to call insurance all the time? 

I know for me, I don't, I don’t even have a full time job and it's hard for me to keep up with spending four hours on the phone call with insurance every single night of a week, every month because I'm trying to get things approved and all of a sudden they need another prior authorization that I just got like two weeks ago. It's a full time job, like you said. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
I just knew what had to get done and I had to do it because if I didn't do it, who was going to do it? So it had to happen. 

So, you know, when it comes to my kids, there's no mountain high enough. 

**Caleigh (Host) & Lizeth Bosch Haber (CF Mother and Caregiver):**
Ain't no mountain valley low Ain't no river wide enough Baby 🎶

**Caleigh (Host):**

We used to sing that all the time. 

Well, speaking about calls to insurance companies and pharmacies and just communication with medical professionals in clinics and hospitals, what are some do and don'ts that you've learned over the years? 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Probably always take notes, names, dates, times, because more likely you're going to need to refer back because one person says one thing, another person says another, and just keeping it all straight. And you're. I mean, in your situation, you have a ton of medications, so being organized and keeping notes was probably the most important thing that I can think of. 

**Caleigh (Host):**
It's funny because I never saw you take notes. So I'm like, where were you doing this? I always felt. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**

My head..

**Caleigh (Host):**

Exactly. I always felt like you just kept everything in your head.

Which is impossible for me to do. I have to write every single thing down. I have to double check and confirm before I hang up, ”Like, so you told me to call this number and press this number and ask for this person specifically and then do these steps”, and get everything to a T before I can move on. Because My head, especially with the medications now, I don't keep anything I have to. 

I write down, I have a calendar that literally wrote down film video to send somebody happy birthday today because I'll forget. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Yes. We need to do that. 

**Caleigh (Host):**
But I always felt like you were just this, you know..

**Lizeth Bosch Haber (CF Mother and Caregiver):**

I forget things, now, but back then I had a pretty good memory. 

**Caleigh (Host):**
And have you learned any don'ts possibly with like communication with people? 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Don't know for answer. That's the main thing. 

You know, when Caleigh had her first transplant and went into rejection and we needed the re-list her again and they said because of not wanting to waste an organ on someone they thought would not make it, they said that wasn't going to happen. 

And I said, we'll see about that. And between Bryan and Michael and you, I. We just searched the country for a place that would take you and luckily we had a couple of responses, maybe two or three, which isn't a lot, but luckily UCLA rejected you, I believe at first. 

And it wasn't until I got a phone call in with the actual director, Dr. Ross, and secured an appointment and an in person appointment that we. That this all happened. Don't you remember that so? 

**Caleigh (Host):**
Well, I don't because I was really sick. You were sick, but..

**Lizeth Bosch Haber (CF Mother and Caregiver):**

the paper wen’t through and he denied it. He said, no, this isn't going to happen. It's not, you know, you weren't going to be able to survive it. And then I begged for an appointment. We took you down. 

No, what I do remember is being in that appointment with Dr. Ross and him saying, you know, now that I've met her, I'm a yes, but if I would have just seen you on paper, it would have been a no. 

**Caleigh (Host):**
We just talked about this on the podcast yesterday. It was Brian who reached out to Deloitte and got his partner to call the president at UCLA who got us appointment in the door. And then we showed up there and we had you, Michael, Brandon, Lauren, Bryan, dad, all five of us, and Grandma. 

Yeah, and I remember I had my scooter because I couldn't walk and we parked it across in some random room and walked in because we knew if I couldn't walk it would be like an immediate no. So we like parked the scooter and walked in and then basically like presented myself more healthy than I was and told him, showed him we had so much support. We had a lot of family support. And he did say that. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Yeah, he did say on paper you were a no, but now that I've met you and seeing your outlook on life, positivity. You're a go getter. You will fight to the end. 

**Caleigh (Host):**

We were waiting from the time we got that appointment to, I think when we got, like, the official *yes*. You were filming videos and sending them to him. Do you remember that? You filmed, like, videos on our balcony at Solaire, and you were saying, like, tell him that you'll fight and do anything he wants to survive. And I was like, “Okay”, show him that you can do a squat, ”Okay”. And I would just, like, do it. And then you sent videos on email or text message, because I'm pretty sure we ask, like, always to our doctors, “Can I have your phone number?” And they're like, “no”. And then we're like, “but I think we're gonna need it”. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
So by number, I mean your cell. Yeah. 

**Caleigh (Host):**
Like, not the emergency lines. Yeah, yeah. I was in the hospital when we got the y*es*. And then we took a PJ to UCLA. You came with me on the. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
No, I remember. But I remember being shocked the first UCLA when you helicoptered in, because I think we thought you were going to be listed and you were going to, like, live nearby, like, the first time. But when we got off the plane, they said, well, you're not leaving here until you get your transplant. 

**Caleigh (Host):**
Yeah. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
I mean, they literally meant you're not leaving here. And Kayla lived in a hospital room six months. Yeah. And, yeah. So think about that. Being in a room for six months just waiting to see if you were going to have another chance at life. 

**Caleigh (Host):**
But I was lucky because you guys brought a lava lamp. I had a fish at one point. Eyebrows waxed. Somebody came and did my nails once. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
And we would take little. 

**Caleigh (Host):**
We went to Starbucks. I mean, our doctor approved that. We went on walks outside the hospital. We told him went to a garden. Well, I went on the wheelchair, but I could scooter. He was like, it's good for you to get out. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
I think that's a point you should point out, too, because a lot of people with not just CF but other illnesses, they're so worried about their appearance. And what will people think if I'm in a scooter? And really, you got to give all that up because, you know, the scooter is the only way you can get around. And you want to be outside. You want to have your own independence in a way, then you do that. You know, you do whatever you can do for your mental health. 

**Caleigh (Host):**
But I think the part that is missing there is that as the person who's going to be in the scooter and going to be wearing oxygen and going to be having a feeding tube. You know, I can't escape that. I can't leave and go to a concert at night and pretend it's not happening or, not that you pretended it wasn't happening, but like you could walk away from me and look like a normal person. You could go out to dinner and eat and, you know, not be immediately looked at by others all of the time judged. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Right. But you seemed to overcome that because you. 

**Caleigh (Host):**
Yes, but it wasn't easy emotionally. It's. I see your point by. You just have to do what you have to do if you want the end goal, which I totally agree with.

Now looking back, I shouldn't have been self conscious about oxygen because I had more support. I had more people who were encouraging me to be myself despite that and not worry about what other people are thinking. And they were alongside with me, proud to be my brother, my partner, my mom that were showing me that I could still sometimes go out to dinner with a group of friends. But you guys just came with me. Usually one person came with me to help support me because that is what I needed and I think my friends knew, you know, if I wasn't going to bring somebody, they were probably going to have to come over to the house, which if I had minimal friends, I mean, a couple people on my hand that did that were really amazing and were a big part of survival. It's not easy if you don't have support and people alongside you that are building you up. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
And it's also, you know, difficult, I think for maybe some of your friends back then because they were young too, in their early 20s and didn't maybe have never had illness in their lives through anyone and, you know, they were able to learn through you. 

**Caleigh (Host):**
Yeah, that's a good point. You point out. I think when I first became ill at 17/18 years old, still in high school and right after high school and everybody else went to college, went far away, all of my friends and I was very, I felt very isolated and left behind and I did stray from a lot of relationships and break a lot of relationships

**Lizeth Bosch Haber (CF Mother and Caregiver):**

The first two years out of high school while everyone else went to college. 

**Caleigh (Host):**
Yeah, I felt like people couldn't…

**Lizeth Bosch Haber (CF Mother and Caregiver):**

relate

**Caleigh (Host):**

understand, not relate. I didn't expect anybody to relate, but people weren't understanding to the situation at all because the people that did want to maybe come visit would tell me about like the parties they're going to and this and that and I felt very like, why are they telling me about this stuff when I'm dealing with all of these big things like sharing your lives. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**

That was their what's happening in their life? You know, you could feel some jealousy or some, why isn't that me? Or, you know. Yeah, I could see. I mean, any normal person would think that way. 

**Caleigh (Host):**
Yeah, you just don't feel understood or supported sometimes because people cannot understand. 

And also because, like you pointed out, people are also my same age going through having a friend who's sick for the first time and don't know what to say or how to act or what to do. 

And, you know, I put a lot of expectation on people. And as I matured and as I got older, I've learned that really, I shouldn't expect anybody to understand, even peers with cystic fibrosis, because as you said, it's so individualized, the disease. And so I need to not have expectations from people and understand that this is a learning process for everybody. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Right. 

**Caleigh (Host):**
You know, friends, supporters, caregivers, me. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
That's why the blogging worked out so well for you. It was an outlet for you too, I think. So not only helped you, but it helped others. The best of both worlds. 

**Caleigh (Host):**
Prior to sharing my story online, were going through some really tough times as a family. And you and I had a few years there where it was really just us going through my disease as well as trying to start over in life and trying to have a life where we could sustain it. You know, put a roof overhead, put foods overhead, you were doing all of that responsibility was on you. And at least from my perspective, I didn't feel a lot of outside support otherwise, you know, when I was in the hospital for a few years, mostly it was just you that came and saw me for a long time. 

And once I started blogging and the community of people online started to become involved in the journey and showing support, how do you think that you saw that impact in us as a family? 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
It was eye opening and humbling to have people reach out to us, total strangers that we didn't know far and wide and be concerned for our welfare, be concerned for your health. 

**Caleigh (Host):**
How did that outpouring of love from strangers impact the way that were living? The way that, you know, the weight on your shoulders. We were fundraising and there were so many people that were so generous to us and really helped us in supporting through the journey..

**Lizeth Bosch Haber (CF Mother and Caregiver):**

But, but that fundraising was really for when you had the transplant, so it wasn't like it was alleviating. Any of the weight on my shoulders at the moment. Because, you know, we. We always kept that aside. We didn't know what to expect once you got the transplant. We didn't know were going to need a second home next to the hospital. And that was really what were focused on, the fundraising for the transplant. 

**Caleigh (Host):**

Yeah, I agree, because the entire time that were fundraising, you were still working. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
The fundraising was for when you would get a transplant. So luckily, as it turned out, your brother volunteered to be your caregiver, in which case I was able to work because he was with you. I don't think you could have been left alone at that time. 

**Caleigh (Host):**
No, I think you were going to work, and every time you came back, you realized that I hadn't eaten anything all day and I hadn't showered and I wasn't able to make my bed anymore. You were helping me get dressed at one point and shower and do all those things. And really, it was too much for you to keep up with? Waking up, sorting my medicine, then taking care of me and getting ready. It's like having a baby and then working, you know, so many hours a day. And sometimes you'd come by throughout the day to try to feed me or do something, but with no energy and no appetite, there was. I would just sit on the couch for literally, like, all day. And so I was deteriorating quickly. And, yeah, we needed somebody else who could help. 

And were really lucky that Michael supported us in that because I don't know how we would have gotten through alone, honestly, with seeing how much…

**Lizeth Bosch Haber (CF Mother and Caregiver):**

Well, we couldn't. 

That's why they suggest two caregivers, because not one person can do it all. It's impossible. And luckily, he had a sense of humor. So I think that really helped you with your depression. And seeing things from a different perspective, not just mom, was beneficial. 

**Caleigh (Host):**

Yeah, I think, because I always looked up to Michael my whole life, and he was always, like, the cool guy to me, having his support and knowing that he loved me and he was happy to bring me places and happy to. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Proud of you. 

**Caleigh (Host):**
Yeah, he was really, you know, putting me on his shoulders when I couldn't walk, to get me to the bowling alley to go hang out with friends or take me to the Giants game or whatever it was. 

He would just roll with the punches and bring me. And I think that lifted my confidence in being able to be myself and embrace cystic fibrosis entirely, because I had this person I looked up to who, despite everything I was going through and despite the oxygen and the feeding tube and everything, the way that I looked differently, he never judged that he didn't see me as somebody else. He still, you know, wanted me next to him, and that was a big part for me, for who I am. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**

And also, you got to give yourself credit for your kindness. To every nurse where I might have been a little more aggressive or a little more patient because I needed. I knew what needed to happen, and I wanted it to happen now. Because, you know, seeing you in pain was always very difficult, and I just wanted to alleviate that pain. But the. The care or the nurses, the respiratory people, all these people really, that give so much of themselves and took good care of you, I think a lot of it had to do with the way you were positive and compliant and kind. 

**Caleigh (Host):**
Even when I threw up on them or shirt on them or did something. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**

You know, everybody likes to be around people when they have a good attitude. 

**Caleigh (Host):**
Yeah. I do think that's really important is understanding that doctors and nurses and caregivers are just human beings at the end of the day who have real emotions and have real feelings, and treating them with that same respect you want to be treated with is very important, not only just with human connection, but also for survival. Because I think also relationships, you grow, foster the type of care that you receive. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Right. But also, you not only were going through the illness, you were at that point becoming an adult, really having your own voice. And the doctors, remember, it transitioned. 

The doctors stopped talking to me, started looking at you and talking to you directly and expecting you to make your decisions directly.

**Caleigh (Host):**

which you didn't like. I can't tell you that much,

**Lizeth Bosch Haber (CF Mother and Caregiver):**

But you consulted with us, and we always came to an agreement on what was best for you. And saying no to transplant wasn't a good option. So let's see how things turned out. 

**Caleigh (Host):**
Luckily for sure, who knows

**Lizeth Bosch Haber (CF Mother and Caregiver):**

Who know, what the future will hold? But today, here we are in Barcelona filming this podcast. Who would have thought? 

**Caleigh (Host):**
I know. And having cystic fibrosis has really shifted my goals in life. Because growing up, I think my goal was to be a mother, was to be ahead of a household and be like you. Stay at home, mom. Be volunteering all the time, have that time with your kids and your husband and your family and things. 

And cystic fibrosis has shifted my goals in many ways because it's given me a different perspective on life as a whole, and it's helped shape who I am. As much trauma and pain and loss I've been through, I'm also very grateful for the disease because without These experiences, I wouldn't have this perspective on life. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
That I do correct. And I think staying positive in any situation, you know, and it is hard at times, but I don't see any other options. 

**Caleigh (Host):**
Do you have any advice for parents of children fighting cystic fibrosis or any other illnesses? 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Well, obviously, don't take any day for granted. 

I think a lot of the times I might have been scared or timid or whatever, but you have to put that aside and go forth. 

I don't know. The only advice I would have would be to love you and spend, you know, time with you, quality time with you, but to listen to you. And maybe I wasn't so good at listening to you and your pain because I knew we had to do A, B and C to get you through that pain. But at the time it was painful, but I still wanted to do A, B and C. So maybe listen a little better, but at the same time discuss what has to happen because it was, like I said, the only option to keep you here and to give you a future. 

**Caleigh (Host):**
As we wrap up the episode, I'm going to ask you, I guess, one last question and it's a combination question of what has been the most difficult time in my medical journey for me from your perspective, and what has been the, I guess, most magical or rewarding or joyful time in my life. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
I think the only time I felt defeated or felt like this is maybe too much and we're not going to get through it was when I was on that med evac plane from Hawaii to Stanford. And seeing you in your condition and seeing the amount of people that were needed just to take care of you, to get you know, through that five hour flight and also at that time, coordinating everything in order that the Queen's Hospital in Honolulu could talk to Stanford. And what Stanford wanted was being done and knowing that, you know, your only chance was to get you back to Stanford, where they knew you and knew how to care for you was what had to happen. And seeing you on that plane in your coma, with hoses, tubes, everything was probably the only time I felt like, wow, or, you know, how are we going to get through this? But we did. You did. And seeing your life now, even though it's by no means a cakewalk, but you're handling it well and you have a lot more life to live because of the transplant and having gone through everything you went through.

And again, starting with the main thing, that organ donation, in a lot of other countries, it's just normal. Everyone's an organ donor. So I guess if I became anything, I'd want to change that law in the US and you can opt out, but you're automatically in. Sounds good to me. 

And I'm proud of you, Caleigh. I'm so proud of you and I love you so much. I can't imagine my life without you. 

**Caleigh (Host):**

Thanks, Mom

**Lizeth Bosch Haber (CF Mother and Caregiver):**

You’re my bestie!

**Caleigh (Host):**

Bestiesssss!

**Caleigh (Host):**
How do you think that this podcast is going to help the cystic fibrosis community? 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Well, I think you've got a lot of great guests lined up and hopefully I think it'll be informative. But more than education and information, which I know you will provide, it'll be good for people to see the reality of your life. Not just, you know, oh, she looks great, she's here and there, more like the everyday things you go through. 

**Caleigh (Host):**

That's true. 
I mean, we're going to be talking about a lot of different topics on the podcast with multiple different guests, including individuals living with cystic fibrosis, parents, professionals in the medical field, and I'm hoping that our listeners are going to gain the perspective from other people and, you know, what cystic fibrosis has taught them, or how to maybe shift their mind to look at their situation differently in a more positive way. And also, as you said, education, I think that's the most important thing in life and in having a disease is to educate yourself about it as best as you can. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
Right. But also know that just I think you don't want to focus on someone that might be on the list now and is waiting. And here's your podcast. I hope they would see that it is possible to have a better outcome than you're presently living. 

But at the same time, say one of your guests is talking about diabetes and how diabetes can be a CF related illness that you get. That doesn't mean to someone else that doesn't have diabetes that they're going to get it. You know, just everything's got to be put into perspective. And it's such an individual disease that just because this happened to you doesn't mean it's going to happen to them. 

**Caleigh (Host):**
That's part of education, though, as I said, I think you have to, and I think you do now, but had to and have to give me credit in understanding that my disease is individual and that just because something happened to somebody else, it won't happen to me. And we also have to hope that people living with cystic fibrosis also understand that because as we see in the last five years, this disease has doubled in life expectancy and this disease has totally shifted from how it is people. 

**Lizeth Bosch Haber (CF Mother and Caregiver):**
As we progress with computers and AI and everything, things hopefully will get better and CF will stand for…

**Caleigh (Host) & Lizeth Bosch Haber (CF Mother and Caregiver):**

Cure Found. 

**Caleigh (Host):**
Thanks, Mom

**Lizeth Bosch Haber (CF Mother and Caregiver):**

Thank you thank you everyone. 

**Caleigh (Host)**
Before we wrap up today's episode, I want to take a moment to talk to you directly. Our listeners, your voice, your story and your support are what make Our Fight to Breathe a powerful platform for change and connection. 

We believe that every story has the power to inspire and create change. Whether you're living with cystic fibrosis, a caregiver, a medical professional, or a supporter, we want to hear from you. By sharing your experiences, you're helping to create a world where no one feels alone in their CF journey. Your voices can offer comfort to someone in need, your experiences can provide valuable insights, and your support can drive advocacy and awareness. 

Share on social media using the tag @Fight2Breathe or reach out at caleigh@fight2breathe.org.

And a heartfelt thank you to the Cystic Fibrosis Foundation’s Impact Grant for supporting this podcast.