Forty seven year old Andy Lipman talks about what propelled him to write several books and start the CF Warrior Project. You'll be inspired by Andy's story! Lipman is a positive role model, who defied all odds to become a college graduate, Olympic-torch bearer, runner, advocate, author, husband, and father. Dedicated to finding a cure for this genetic disease, Andy works tirelessly to raise awareness and funds for the terminal, invisible disease.
For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma - the science of possibility. https://www.vrtx.com
Reach and read about Andy Lipman: https://www.cfwarriorproject.org
Andy's family foundation: https://www.wishforwendy.org
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/
Note: Transcripts are auto-generated.
Andy: Nothing on the Bonnell foundations. Living with cystic fibrosis podcast should be considered medical advice. Medical advice can only come from your CF physician. Cystic fibrosis can be a devastating diagnosis, but living with the disease can bring positivity and a new appreciation for each day. From the Barnhill foundation in Detroit, Michigan.
[00:00:17] It's the liquid cystic fibrosis podcast sponsored by Vertex pharmaceutical. Here's your host, Laura bono.
[00:00:24] Laura: If you have sisters. Take fibrosis or you're a caregiver you probably have heard of Andy Littmann. Andy is 47 years old and works hard to raise awareness about CF. As you'll hear Andy tell you in this podcast, he is an athlete with a rigorous daily workout routine to keep himself healthy.
[00:00:42] He also has a business degree. He's an author, husband and father of two, which is quite an accomplishment. Littmann also start at the CF warrior project after his fourth book, grab a coffee or an ice tea and relax because you're about to hear a great story of a CF warrior. Thank you, Andy Littman for joining us on this podcast.
[00:01:05] It's great to meet you via zoom. Face-to-face of course, I know your work and I love everything that you're doing. So thanks for joining us.
[00:01:13] Andy: Thanks for having me, Laura. I really appreciate it. I'm looking forward to this. Thanks for all you do, by the way. I'm a big fan of yours as well. Thanks.
[00:01:19] Laura: And it's been interesting to learn a little bit more about you that I didn't know.
[00:01:23] I did not know that you had a sister that died, um, at 16 days old,
[00:01:28] Andy: correct? That's correct. Before I was even born. Was
[00:01:31] Laura: this your parents' first child with CF? Is that when they,
[00:01:35] Andy: yes, that was their first child in all. You know, my, my sister, Wendy was born in 1970. And unfortunately just live 16 days didn't even leave the hospital.
[00:01:46] Only one picture was ever taken of
[00:01:48] Laura: her. Wow. And did they realize at that point she had CF or did they discover that when you were born?
[00:01:54] Andy: No. They realized that when she wasn't growing at all. And so she was just very sickly and, um, they knew something was wrong. And, you know, back then obviously newborn screening wasn't available, but they knew to do a sweat test and a tester.
[00:02:05] And immediately they knew she had CF. And unfortunately it was just too late, you know, obviously she went live 16 days. There wasn't much they could do.
[00:02:13] Laura: Isn't it interesting to you? It's such a hit or miss testing in the seventies or even today, sometimes even with newborn screening, but. It's so hit or miss, like some people really lucked out and they found out like, you know, your parents did about your sister, Wendy, and then some people in that same year had no idea and had three kids with CF and didn't find out until maybe their kids were 18 it's so I'm not consistent.
[00:02:40] Andy: It was pretty common back then, honestly, not to get diagnosed the newborn screening it's now so effective now, but back then, there really wasn't anything. And I was born very big. My, I was born late and back then they didn't that pushed the mom to have it, you know, once the baby finally came on, I was, uh, a couple of weeks late and I weighed 10 pounds, 10 ounces, my mom and I, we even said, you know, Wendy hadn't been born with CF, even though I had a block meconium, ileus, they may not have known.
[00:03:09] I had CF because I was such a big baby that they would've just been like, Oh, you just had an intestinal blockage. He'll be fine. You know, blah, blah, blah. But since she had it, they knew immediately when I had the meconium, that likely I had CF
[00:03:20] Laura: and you're 47 years old now, is
[00:03:22] Andy: that right? I am, but I don't look a day over 46 and a half.
[00:03:26] Yeah. I wouldn't
[00:03:26] Laura: even say 37. I mean, truly, you know,
[00:03:30] Andy: now I'm a bigger fan of yours.
[00:03:32] Laura: Oh, thank you. Yeah, no, great. And CF, um, and age is so important. That's why, you know, everybody's always asking, Oh, how old are you? And things like that. But now do you have other siblings or. I
[00:03:45] Andy: do. Um, my sister is adopted. I have a younger sister.
[00:03:48] Who's 12 years younger than me, Emily, and she's doing great. And she lives in Atlanta as well, real nearby. So I have one sibling and, uh, it's doing great. We have a great relationship and, you know, she's very supportive of anything we do CF related and it's just been great. That's
[00:04:03] Laura: wonderful. So your parents diagnose you and then how was your life as far as treatment with CF?
[00:04:13] Andy: We're pretty lucky. I mean, granted, I was on antibiotics several times, but I was able to avoid, um, IV antibiotics when I was younger. Um, but I did cough a lot. And my mom, during the week during the workweek would do my third. She quit teaching when I was born because she knew what was going on and she would do my postural drainage every morning.
[00:04:32] And, uh, my dad would do it on the weekends and that was kinda how it worked. And I would take my digestive enzymes for every meal. And I remember that like, one of the most exciting things for me is when they finally told me I could have fatty foods. I remember being in the doctor's office and they gave me pudding for the first time.
[00:04:47] And I was like, so excited. It was just crazy. I mean, back then, I couldn't really eat anything that had a lot of fat and I was very skinny. My arms were like toothpicks and that's kinda how I grew up.
[00:04:58] Laura: Isn't it interesting, that whole food thing is, um, has he evolved as well? I think I don't know about you, but my group have decided there they eat very healthy, not necessarily high, high, fat food anymore.
[00:05:12] Um, and work out a lot. So that's
[00:05:14] Andy: good. I mean, When I was growing up, they just said, eat whenever you can. While at the time it seemed like it made sense. Now it does it now it's, you know, eat, but eat somewhat healthy, you know, try to avoid fried foods where you can and, um, just try to eat as healthy as possible.
[00:05:30] And I think I kind of do that now. Took a while to, uh,
[00:05:33] Laura: you're very
[00:05:34] Andy: active, right? I am, I am. I work out every day. I run every day. Um, whatever it takes, you know, in the gym. Well, at the home gym, now we have a pandemic, but, uh, you know, I do work out as much as possible. So
[00:05:46] Laura: at what point did you decide. That you were going to write some books.
[00:05:51] Um, you're an author of four books, a fifth on the way, is that correct?
[00:05:56] Andy: Correct. So I guess for me it was, it's kind of a strange story, but you know, I, I knew I had a sister growing up, but my parents never told me how she died. I assumed it was sudden infant death syndrome because 16 days, not a lot of time somehow.
[00:06:10] I just woke up on my 25th birthday. And I remembered a, an article that I read when I was a kid and it was about CTF. And it said the life expectancy for people with CF, um, you don't normally live to the age of 25. And I was terrorized by that as a kid. I mean, traumatized by it. It was awful. And then, so I woke up and my 25th birthday and all of a sudden that flashback came.
[00:06:30] I remember reading that article. And all of a sudden I wanted to do everything. I want to write a book. I called my mom and I wanted to know how my sister passed away. And she finally told me, she said the whole family kept it as a secret because we didn't want to scare you because we knew you shared the same disease.
[00:06:47] And it was at that point. Um, I went to the cemetery, um, for the first time my mom. Unbeknownst to me, went to the cemetery every single year to visit my sister on her birthday and brought her a stuffed animal. And so that was the first time. And that was the day I decided I was going to make a difference in the CF community.
[00:07:04] Laura: Wow. What did you say to your sister that day? Did you talk
[00:07:08] Andy: to her? It did. Um, I apologized actually, because at first I apologize for never visiting. But mostly, I apologize because I was bitter a little bit as a kid because during around December, January, every year, my sister was born, December died in January.
[00:07:23] Um, my mom would always say, you know, you're lucky to be alive. You know, she would always get really sad and just always telling me you're fortunate. You're fortunate. It took me a long time to figure out why she did that. And I was bitter towards my sister. Cause I'm like, if you hadn't died, I wouldn't have to deal with this.
[00:07:36] And so I told her, I'm sorry. And I also said, I was sorry that I never told people I had a sister. And so I wanted to recognize her. I wanted to make a difference with her. And we started a, um, an event which slowly became a foundation and we've raised about four and a half million dollars for the cystic fibrosis foundation and her memory called wish for Wendy.
[00:07:55] And it's
[00:07:55] Laura: still going strong today.
[00:07:57] Andy: It is. Um, we didn't do the softball tournament last year and we're debating doing it this year because of the pandemic, but, um, we still raise a lot of money for it. And, um, it's a, you know, a, a private family foundation that is, has done really well. We've raised a lot and my books, um, actually it goes to that as well.
[00:08:14] Um, they're not for profit. And a lot of times we'll give it to a CF charities. That's our thing is we give it to other CF charities around the country, the CF foundation, you know, even smaller foundations where we know that people with CF are running them and making a difference. That
[00:08:28] Laura: is fantastic. And you must get so much back every time.
[00:08:33] You put on a book or do something with your foundation. Your first book was the CFR, your project, 65 stories of triumph against cystic fibrosis. Right? What happened after you did that book? After
[00:08:48] Andy: I did that book, I just got a lot of notes from parents, um, of people of kids with CF saying, thank you. This gives us hope.
[00:08:55] You know, we were writing about. All these people with cystic fibrosis was actually my wife's idea. Um, because I, I put these Facebook posts that people with CF and they were getting tons of shares all over social media. And she said, you should write a book. And I'd already written books about myself and I was kind of sick of writing about myself.
[00:09:13] You know, I thought it'd be fun to write about other people. And that's what got me into that. And so I wrote about 65 lawyers around the world, not just the country, but the world that were defying the odds with CF and people just really took to it. So I thought it was really cool. So I decided to do another one, which is what we're working on now.
[00:09:29] And it really.
[00:09:30] Laura: Is a cool book. It really highlighted so many different people.
[00:09:36] Andy: Yeah. And different stories, which is kinda neat. You know, some people were diagnosed when they were in their forties. A couple of them were diagnosed, you know, really late in life. And then there are others diagnosed at birth and there are others that are athletes, others who are writers.
[00:09:49] I mean, everybody's got their own thing, but the most important thing is they work hard. They don't give up. And I tell people all the time, just because someone passed away from CF didn't mean they didn't work hard. We're all CF lawyers before or after, but it's, it's what we do in that time that we have a life that defines us, you know, whether we live 20 days or 20 years since all about fighting.
[00:10:10] Laura: Absolutely. And what book are you working on now?
[00:10:14] Andy: So it's a, it's going to be the second edition of the CF warrior project. I think we're going to call it kind of something similar that we're working on a title, but we've already got 65 lawyers. So I'm editing as we speak. And then I'm going to hire an editor to kind of help me with that.
[00:10:29] And then we'll start looking for publishers and go from there and just see how it goes. And we're really excited. I think it's going to be a really great book and this time we're doing it a little differently. It's not everyone has CF. Um, we have a lot of people in the book now that are champions for the disease, uh, whether they're celebrities, where they run a foundation, um, where they, um, just, or they're a parent of a child with CF, or they're a sibling of a child with CF or an adult with CF.
[00:10:56] So it's really just all over the map and we're really excited about it. And I think it's going to be, you're going to see some people in there that you're going to be, I didn't know. They had a CF connection when they do.
[00:11:05] Laura: Wow. And what do you think about people sharing their stories? I, I guess I, I think to my girls and, uh, maybe they don't always want to share their story or they don't always want to talk about CF.
[00:11:18] Do you find that yourself as well?
[00:11:20] Andy: Yeah, for most of my, you know, until my twenties, I never shared my story. In fact, I didn't tell people unless they were really, really, really close to me that I had CF because I always felt like it made me look different, um, that I was alienated because of it. I remember I would do my best when I was in my fraternity house in college.
[00:11:37] And when someone knocked on the door, I ripped it off. Didn't want anyone to see. Put everything away. They'd ask, what was that loud noise on? What noise? You know, I didn't hear anything. And, uh, I guess I had the TV up really loud. You know, I just didn't like to tell people about it because I thought it made me look different and I didn't want people to pity me, you know, because of this disease.
[00:11:54] And it took me a long time to figure out that that wasn't the point. The point was I could advocate that I could raise awareness by telling people that someone, you know, has a disease and he's not just living with it. He's. Fighting for his life every single day. What
[00:12:07] Laura: new things have you learned since writing, you know, or you're still in the process of writing this book?
[00:12:13] Andy: I would say that everybody's got a different way of looking at cystic fibrosis, you know, some P and everybody's had a different journey, to be honest with you. Some people have been in hospitals, all their lives. Uh, some people have been fortunate and maybe haven't been in at all or just been on IVs at home or have been on oral antibiotics, but everybody's got a different journey that doesn't make them less of a lawyer.
[00:12:33] It just makes their journey different. I think that's what I've learned even from the first book. The second book is I think sometimes when we don't go through as much like me personally, you know, I've done all the IVs and stuff and I've had a lot, you know, some very bad sicknesses, but not like some people, but that doesn't, like I said, it doesn't make you better or worse or anything else.
[00:12:52] It just means you in fortunate in many ways. But at the same time, we're all fighting the disease. And I think some people are afraid to speak up because they're like, well, mine hasn't been as bad. I'm like, that's okay. Yeah, and that's okay. You're still fighting cystic fibrosis. I mean, you're still doing all these treatments every day.
[00:13:07] You're still taking medications. You're still, you know, doing everything you can to beat the disease. So don't feel worse about it. I think being open is so important now, granted, I don't think you need to do it as a kid. I think that's a really tough time to do it, but as you get older, I think it's a great opportunity to raise awareness and help other people.
[00:13:23] I agree.
[00:13:24] Laura: So everybody seems to want to write a book. I mean, so many CF moms that I've talked to and even myself, I've put it off for 25 years. I've thought about it. Like, yeah. You know, I just don't have enough time or whatever. And like I said, other CF moms are thinking the same thing. What is it for you?
[00:13:41] Is it just jump off the cliff and do it kind of thing? Or just start? How did you propel yourself? Or did you just not have any thought? Like you just did it
[00:13:53] Andy: well, I always liked to write, you know, I never had written a book per se, but I, you know, when I would do research papers or anything else in school, once I started something, I really loved it.
[00:14:04] Like I got into it, then I thought cystic fibrosis is such a passion of mine. Like learning about it. I, I thought to myself at the first book I did, which if you can see in the background, it's alive at 25, that wasn't on purpose by the way. Um, but that, that was the first book I wrote, you know, waking up on my 25th birthday, but I thought about it.
[00:14:21] I was like, when I was growing up, I didn't have. Anyone. I knew what cystic fibrosis, because at that time they finally started telling people, you really shouldn't be near anyone with CF. You have the six foot rule, unless you absolutely. Unless you're obviously, but if you're not, I mean, it's very difficult.
[00:14:36] And so I didn't really have anybody to talk to. And there was no internet back then, so I didn't have social media that I could find out. And so, yeah. I wanted to kind of tell my story so that if there's somebody younger who didn't have anyone, they could read that book. And the other thing was when I was reading books, when I was younger about, I hate to say it, the author either passed away, or it was the parent who wrote the book.
[00:14:59] And so you really didn't get a firsthand feel of what it's like to be quote unquote beating system fibrosis, you know, and I wanted to tell that side of the story and I know to some they're like, well, that's not realistic. I'm like, well, I'm here. Right? You know, and I'm fighting and I feel like I'm beating it.
[00:15:13] It's a mental thing for me. And that's not to say that someone, like I said, who died after a few years, isn't beating cystic fibrosis. We all are by fighting it every single day. That's beating it in my opinion. So that's what it was all about for me.
[00:15:26] Laura: And I have to say that as a parent, you know, when the girls were little, I have about 10 books about people with CF who died and I still haven't read them.
[00:15:37] I bought them. I saw them. I'm sure there's, you know, therapy. We could work it out for me, but I bought them, but I cannot read them. No, and I still can't read them, but I thought like, Oh, I need this information. I need to know, but I couldn't open the
[00:15:52] Andy: book. Yeah. That for me is like Alex, the life of a child, which is a great book.
[00:15:56] Great. You know, as a TV movie in the eighties, it was also a really well-written book. I was friends with Frank before, so, you know, I didn't read it till I was much older and it was still hard for me a bit to see someone, you know, suffer so much. I think she died at the age of eight. For those of you who don't know Alex to Ford, her father Frank, before one of them.
[00:16:13] Biggest sports riders in the business and also worked for NPR or sports illustrated, HBO, real sports. And his daughter had CF and we lived eight years and they just, they told her story and she was just an amazing individual, but she did it, she passed away. And, um, for me, you know, I saw that TV movie when I was a kid.
[00:16:31] And that was traumatizing for me because I saw her throwing up. I saw her sick. I saw her in the hospital and it was just, that is
[00:16:38] Laura: a lot. And then you wrote your book when you turned 35?
[00:16:44] Andy: I did actually, right before that, I had written a second book. It was a fictional story though. Um, it's called a superhero needs no Cape and it was about a boy.
[00:16:51] Who wanted to play major league baseball, even though he had CF. So I told that story, maybe it's not, it's so fiction. It's what I always want to do. But now my son is living through me and he's playing little league, but I told him, don't worry, you don't have to make it to the majors. Um, but, uh, that's a relief, right?
[00:17:05] Exactly. For both of us. But, um, so the drive at 35 was just yeah, telling the story of how my wife and I, how I got married. Um, my wife and I got married and we had children through IVF. We told that story and that was obviously a difficult story to tell, but it was worth
[00:17:21] Laura: it. And that is a story because women with CF can have a baby.
[00:17:28] It takes a big health toll on them. But men with CF usually.
[00:17:33] Andy: 96 to 98% are infertile. And that's basically because they don't have a vast deference. And that's what basically takes the semen to the penis, to the, uh, you know, all that, which I should have learned that in health class. But, um, it was, uh, very difficult to learn that I learned that before I was even married.
[00:17:49] I wanted it before I got, sorry, dating, you know, in my twenties, I actually did the research. I went and got tested and was told my. Sperm was suboptimal. And, um, I was really sad about that. And, um, but you know, when my wife and I were dating, when we were, you know, about to get engaged and she told me she was in it for the long run and we could try and we could always adopt, you know, whatever it took, but, uh, Yeah.
[00:18:12] Going through IVF was one of the toughest things for both of us, not just the physical part, which she obviously dealt with a lot more on the physical side, but the emotional and the financial part is so difficult to
[00:18:23] Laura: deal with. And hopefully now there are foundations that help pay for that. I mean, you know, we do financial assistance, medical assistance, but hopefully because there's no other way.
[00:18:36] I mean, of course there's adoption and things like that. But if you're trying to do it, you know, in vitro, that's something
[00:18:43] Andy: it's really difficult. And I had, you know, it was the hardest part is like in social media, when people find out that you went through IVF, they're like, how could you do that? How could you bring this disease to other people?
[00:18:53] And I said, listen, First of all, I don't judge anybody else, whatever they do. But I said, my wife was tested. She didn't have the CFG. And if you know anything about cystic fibrosis, that meant pretty much my kids were likely to be carriers and that's it. And they'll have to get tested their significant others will have to get tested if they want to have children.
[00:19:09] And I said, hopefully by then there's a cure. Anyway. But, um, we really wanted to have kids. We wanted to make sure that my wife was not a carrier and she wasn't. And so we went through it and that was our choice. And I know that not everyone's going to agree with it, but it was one of those things we really wanted to have kids.
[00:19:24] And, you know, I never take a day for granted. I'm, I'm thrilled that we have to, so we're very fortunate boy and a
[00:19:30] Laura: girl. Yeah, absolutely. We after Molly was diagnosed, our first born, it was a long, hard decision to have a second one. And the in vitro thing was very expensive. So we did not do in vitro and we were naive and we thought, Oh, what are the chances?
[00:19:46] We get to have a second child with CF and you know, one in four, every pregnancy. Um, but we stopped after Emily was born, but same thing, no regrets. The kids know about it. We've not, you know, we've been very truthful.
[00:19:58] Andy: My parents were the same way. My parents were know I was the second and the second one with CF.
[00:20:03] And that's why they adopted the third because, you know, they, they hoped after Wendy they're like, well, there was a 25% chance. What are the odds that, you know, well, it was 25%, but, uh, you know, they didn't think I'd have it and they were hopeful and then it just didn't work out. But it did work out, you know what?
[00:20:17] I'm here, I'm alive and I'm trying to make a difference in the world. And I think, you know, cystic fibrosis is just a part of me, but I don't mind if people say it defines me, that's fine. Because if it makes a difference for others, then I'm willing to take that.
[00:20:31] Laura: I do talk about this a lot with people, but I do see it as a gift.
[00:20:35] I wouldn't say. Yeah, you should have a child with CF because you know, it's Oh my gosh. It's um, Well, I can't even think of the words right now, but it's wonderful and horrible. And, but it is who we are. Right. It's put us on our path to helping
[00:20:53] Andy: sure. You know, um, there were 30,000 people in the U S with CF and 10 million people are CF carriers.
[00:21:00] I mean, it's, it's a big part of the world. Yeah, it's a big part of this country. It's a big part of the world, 70, 80,000 around the world with CF. So it's out there and we all have to make our own decisions and we live with those decisions and we do the best we can with those decisions. It's kind of like Parenthood Parenthood.
[00:21:15] And as they say, you can do a lot of things in Parenthood, not necessarily wrong, right or wrong, you know, it's just, you do what you can, you do what you can to raise the child to the best of your ability. So that's kind of what CF, you know, you do the best you can with the best of your ability.
[00:21:30] Laura: And what do your kids think?
[00:21:32] I think that would be an interesting book from the children's perspective who have parents with CF. Yeah. That's a
[00:21:38] Andy: great, great point. You know, there aren't as many older, you know, they can talk about it because a lot of them are still young with, through the IVF process. Just, it's kind of a newer thing over the last 20, 30 years.
[00:21:50] So there aren't a lot of older CF patients that talk about it, but I've talked to a few and, um, my children, as far as they go, I mean, they. They're kind of used to it, you know, they'll bring somebody in the house, not during a pandemic, unfortunately, but they used to bring their friends in the house and, uh, they would combine, they would see me doing my therapy and they'd be like, what are you doing?
[00:22:08] And my, my sister, my daughter, or my son would just be like, he's doing his therapy. So he does, he has CF makes them breathe better to them. You know, I did a video on my YouTube where I talked to my daughter when she was about, I think she was five or six and my son was like two. And I said, What his daddy DLS, you would go cystic fibrosis.
[00:22:24] Yeah. Like is so used to it. Not like, Oh, it's just, uh, you know, they right. Let make it a positive. I mean, they know what it is, they know their concerns, but they also know that I fight it every single day and, and they know it's just part of our lives. And even during a pandemic, my kids and my wife, people don't talk about that side of it is they have to be careful too.
[00:22:42] It's not just the patient, you know, that has to sit here all the time or, you know, it has to be real careful. It's, it's the kids, it's the wife, it's the significant other, whoever that is. But my kids, they deal with it really well. I mean, they really do, and we don't make it our conversation every day. Um, but if I'm not feeling well, I explain it.
[00:22:59] Or if I do, for example, I do pulmonary function tests at home. Um, my son will see me like tired or deep breathing. Like dad, what's up. Are you okay? And I'll tell him what I did. And he goes, Oh, okay. Okay. Yeah, you don't even that's it doesn't phase them. Right. They know, like if I'm not feeling that great, they'll ask and they'll say thing, but I don't want to make it in their lives, you know, and it's not their lives.
[00:23:20] It's my life. And they're just, you know, they're there to lend support when they need to, but I try not to make it too much of a issue for them.
[00:23:28] Laura: And so how is your wife doing? Um, I know that it's love and that's why she married you. And that's why you're together. But. As I have girls in the early twenties, I do think of will someone be able to handle everything and CF.
[00:23:46] Yeah.
[00:23:47] Andy: And here's an interesting way to look at that. My dad, I think, was the one who told me this is that. Yeah, it's going to be tougher to find someone, but you're going to find someone really special. You know, you're going to know that someone can deal with a lot of tough things. If they can deal with your CF.
[00:24:00] And that's what I found with my wife, you know? And, uh, she's just really, you know, she's not only helps me when, when things are tough, but she's a, she's a, um, motivator. Like my wife has multiple sclerosis and it's beaten cancer. Wow. I mean, she's amazing. And so she's the first one to be like, come on, Andy, you gotta, you gotta do this.
[00:24:19] You gotta pull through, you gotta fight. Like she didn't put up with penny, which is the best thing about her. You know, she doesn't put up with my pity. If I ever get, like, I w I don't pity myself very often, but I've, I've gone through times where I've gotten depressed. I deal with depression and anxiety.
[00:24:33] So, and I do see a therapist for that. And I would be glad to talk about that if you'd like to, but yeah. You know, that's important. Like, she's always my biggest cheerleader, but she's always, she's not gonna take it either. She sees me down for too long. She's only like you gotta get up, you know, you gotta fight.
[00:24:45] You gotta get back up on the mat.
[00:24:47] Laura: And that is with everything your wife's working through and with, and you, I mean, it is a lot, so many stories, right? So we all have so many things to talk about. Um, I hate using the word deal with, cause I think you're working through it and you're just doing what you have to do, but yeah, let's talk about the mental side of it.
[00:25:10] I think as a parent, Of kids who have CF, you know, I've gone to therapy. I highly recommend it. It's phenomenal. And it's wonderful. And, um, one of my daughters goes to therapy more regularly than the other, but how has it helped you and why do you
[00:25:30] Andy: continue? Well, my analogy is, um, I'm a big baseball fan. Um, and if you think about when a pitcher's having trouble on the mound, a pitching coach comes out to help them out.
[00:25:40] And I look at that is you could be the best pitcher in the world. There's still going to be a pitching coach that comes out to talk to you. And what I mean by that is I could be in the greatest shape of my life mentally, but I'm still going to go through something that I need someone to talk to. And so I go to a therapist every six months and I also have a psychiatrist that I go to every six months and it's great.
[00:26:03] And it helps me because. I can talk to someone without fear of saying anything that I deem unhealthy, you know, he can, he can say to me, yeah, yeah, that makes sense. Or are, nah, you know, why not do this? Why not do that? And it's a lot easier when that person is not related to you. When that person doesn't know you and they can hear you out and listen to everything you have and you, and you find yourself.
[00:26:27] Unconditionally just saying anything you can, you know, anything you want, anything you can. And it's just really, it really helps me to see, to see the bigger picture. And, um, the best piece of advice I got from a therapist is I was always telling her I would get really down because when I would accomplish something, yeah.
[00:26:45] I didn't feel like it was enough. And she told me when you get to the top of the mountain, stop. You know, don't go back down to the next and don't choose the next mountain, enjoy the view, enjoy the view and accomplishment. And then when you're ready, move on to the next one. And that really helped me because for awhile, I was like, I did this, Oh, that's not enough.
[00:27:07] I gotta do this. I gotta do this. And that, that's a part of my anxiety. You know, I deal with pretty severe anxiety at times that I. I just can't stop. You know, I'm like, Oh no, no, no, no, this, this can't be good. This can't be good. I didn't do that. And now I've learned to just stop, look at it from a different perspective and get that.
[00:27:24] Laura: And I've had recently, actually a couple young mothers who have very young kids, I would say six and under with CF and they are wanting a therapist that has. CF knowledge, but I don't think that's necessary. And that's what I told them. I think anyone you go to would get educated or, you know, you could talk to them about that and then, and go from there.
[00:27:53] Would you agree?
[00:27:55] Andy: I would totally agree. In fact, I don't think they even need any CF knowledge. I think they need just to be there for someone, you know, the CF part of it. We deal with it all day long. Yeah. Sometimes it's a nice to get a break and we don't always want to talk about just CF. You know, uh, when I was in my twenties, I talked about relationships and anything like that.
[00:28:12] I mean, it doesn't have to be one topic. And I think it's just important that we have someone who can. Talk to us on a wide range of issues and not just the CF part, because we're well aware of that. And if we want to talk about it, we will, but CF doesn't have to be, we don't need someone who needs to understand the medical side of it.
[00:28:30] We need someone who can understand what to deal with anxiety, with depression, anything like that. And so, you know, my two therapists, neither of them had any experience with CF. I've been working with them for years and they've learned over time, you know, they've done their research and they ask questions and.
[00:28:45] That's fine with me. I, like I said, I deal with a social worker. When I go to my clinic, I deal with my doctors. I deal with enough of it. You know, I don't need it every, every minute of the day.
[00:28:55] Laura: When you think to your future, what are your thoughts? Is it concerned for your life expectancy or does that not even enter your mind?
[00:29:05] Are you just thinking about. Kind of what the next book or project
[00:29:09] Andy: is. I guess we learned a long time ago, take it day by day. You know, one day at a time that's a mental thing. That's something with my anxiety and depression. I learned one day at a time is so important, but you know, I also heard this theory, it's called the grandfather theory or some people call it the rocking chair theory is that you're in your eighties somewhere one day and you look back and you're like, you know, I didn't do enough.
[00:29:29] You know, I, I was too worried about the future to enjoy the present. And so what I say to myself now at 47 is I still got a long way to go. Um, God-willing bus doesn't hit me in tomorrow, but yeah, I just looking at day by day. Um, if I write another book great. If I don't it's okay. You know, I look forward hopefully one day being a grandfather, not now God.
[00:29:50] No, not yet, but I do look forward to that and then having, uh, you know, celebrating a 50th anniversary with my wife. I look forward to spending all those years with my friends and family and doing whatever, you know, and just being happy and fighting and being I'm okay. Being known as the CF fighter, you know, as being someone who fights cystic fibrosis his whole life, I hope there's a cure.
[00:30:12] I really do. So I've been, I've been very fortunate that I am on a CFTR modulator, and that has changed my life dramatically. Um, my lung function is gone from high seventies to low eighties to now being in the low to mid nineties. And so to me, while it's not a cure, it's still a difference maker and I'm hoping there will be a cure in the future.
[00:30:34] Laura: It's something else we talked about too. What a wonderful thing, right? The CF modulators. I mean, if you're born with CF today, so much more hope, and although it's not a cure and things can still go wrong and you still have the same fear as a parent, what a wonderful kind of outlook and where you can go with the disease today.
[00:30:56] Andy: What I tell young families now I'm like, This is going to sound strange, but it's a great time to be born with cystic fibrosis. And it really is. I mean, there's so many great things coming out. Um, and even if something doesn't fit you, like if there's a modulator, doesn't fit, you, they're working on others.
[00:31:11] And so it's, it's really exciting. And, um, we live in a world is totally different from the one I was born in, in the early seventies. When I was born, the life expectancy was 16 years for someone with cystic fibrosis. And here it is. This year in September, I'll turn 48. So I've tripled that number and that's something I'm really proud of that I've put in the fight that I'm here.
[00:31:32] And has it been because I've been fortunate? Absolutely, but it's also through hard work working out every day. I run at least two and a quarter miles every single day. Um, I work out with weights in my home gym every day. Um, I do my treatments twice a day and, um, do nasal therapies do anything, you know, take my enzymes with all my meals.
[00:31:53] Um, I haven't missed a treatment in over 30 years, so, uh, well, I'm sorry. Over 20 years in college, I had missed several, but after college, like I just made a decision that I was going to do it every day. So whatever I've had to do, whatever my doctor has advised that I thought would help me. I did it. And, um, we assist in fibrosis patients.
[00:32:12] One of the cool things is we know our bodies better than anyone else. And, um, it's good to have a doctor though, that you trust and that you listen to and that you take their advice and say, Hey, yeah, that makes sense. And if you don't you tell them, Hey, no, I don't think that's something that I think would work for me, but I've learned to be my own advocate and I've learned to fight hard and I've learned to appreciate every single day.
[00:32:32] I'm very, very, very fortunate to be where I am. And I will say one of the most important things about having CF and surviving that isn't talked about enough is having strong support system. And, um, right now my wife. Is amazing. She's been a great support system having two children. Um, my sister, Emily, um, and my parents, my father, Charles he's always like, go, you gotta do it.
[00:32:55] You gotta do it. You gotta do it. And then my mom who sadly passed away this past November from cancer, my mom was my, um, I appreciate it. She was, she was everything. I mean, she was just one of those people that, um, she would love on me, but she would also be like, Come on Andy. Yeah. Pop up, pop up. You gotta, you gotta get up.
[00:33:15] You gotta do it. You gotta fight. Um, I remember one time. She, and I were, this was a couple of years before she passed, but we were in the doctor's office. I had gotten really sick and he was about to admit me and my mom thought it would be better to do IVs at home. And she, and he's like, I really think it would be good if we had met him.
[00:33:33] I really do. And my mom looked at me and looked at him the same thing she did when I was a kid. And my doctor said it was not doing well. She took me to a different doctor, like. The two at one in a different place, but she looked at him. She said, I think he can get better. I think get better, Andy, what do you think?
[00:33:45] You think you can get better? She goes, can you try and get him in inhaler and see how it's PFT is do? So I took a inhaler. My PFT is went up like 10%. They were still really low for me, but he's like, I think we can do IVs at home. My mom looked at me. She goes, I know you you'll fight better at home. You'll get stronger.
[00:34:00] You'll be around your children and your wife. And that's what you need. And six weeks later, I got the IVs off. My lung function was strong and I haven't looked back since, and I remember my mom was always right behind me and she always told me that I could do it. And so even though she's passed away every day, I'm grateful that she was my mom.
[00:34:19] And then, um, I will continue to fight in her memory.
[00:34:23] Laura: And what a wonderful tribute and, you know, that's what our portraits of CF calendars are going to be this year. And you're going to be in it and talking about the support. You know, the team, that's exactly what the calendar is about. So we're honored to have you in our calendar to be able to share your support story in that.
[00:34:45] No, I appreciate it. Thank
[00:34:46] Andy: you. I look forward to that and, um, I'm just grateful. I, I hope that it gets told more often about the support system because when the patient has CF. The whole family has CF. It really, really does. Yes. But I've learned from CF parents, it's such a different perspective and it's not easier, you know?
[00:35:05] Yes. Maybe physically it's easier, but mentally it's so difficult from what I've gathered, you know, just everyday they're like kind of wish I could put it on me and not them, you know? And I just, I hear that all the time. Like I get it, I get what you're saying, having two kids of my own. Now I get it. I hate when anytime they're dealing with anything, I want to put it on myself.
[00:35:24] Laura: Right. Absolutely. And I could really talk to you for hours and hours, because there's so much more that I want to talk about, but all your books are on this podcast page and all your social media contacts are on this page so that people can connect with you and find out more about you. Is there anything else that you wanted to share or talk about that maybe we haven't touched on in regard to yourself or your books?
[00:35:53] Andy: No, I would just say, you know, we're really excited about, I know you'll have the website on there to CF warrior project, but we love what it is. You know, I'm actually, it started as just Facebook posts and then it turned into a book and it's turned into a movement. And what we're trying to do is show that people with CF, we're not here to be pitied.
[00:36:11] We're strong. We can do a lot of things and we're going to accomplish a lot of things. And, um, that's my whole thing is, um, that's why I do what I do. That's why I put in the work. And that's why I write these books because I want to show people that we're not here just to breathe. We're here to live. And, um, a lot of us are doing that every single day and just giving it.
[00:36:30] Whether we're in a hospital, um, whether we're sitting at home during a pandemic, whatever it is, we're still fighting and nothing was going to stop us.
[00:36:39] Laura: And so powerful, very powerful thoughts and words. If somebody wants to get involved with the CF warrior project, how can they get
[00:36:47] Andy: involved? I can go on the website.
[00:36:49] There's a way to contact us, but there's also it's CF warrior project@gmail.com. They can reach us that way, but there's several ways and, um, feel free to, uh, Submit your story. While we already have enough for this year's book, we're going to write other books in the future and we'll be glad to contact you.
[00:37:06] And we also do blogs and, um, guest blogs and whatever it takes, we're going to write about people who are defying the odds and making a difference in the community. So please follow us. And we also have a tech talk now, which I never thought I, as a 47 year old, I would have a Tik TOK. And don't think my kids haven't made fun of me yet, but, uh, we're, we're trying to tell the next generation and the generation, even after that, that CF is beatable, there's going to be a cure and I'm living proof.
[00:37:33] Laura: Well, I'm going to check out that tic-tac and I think everybody should, I want to see your tic-tac. Yeah. That's very exciting. Very hip and cool of you. Yeah.
[00:37:42] Andy: My family would not say I'm hip or cool, but yes, it does seem so from my perspective, but thank you. Give me some hope.
[00:37:48] Laura: Well, thanks so much again for joining us.
[00:37:51] We really appreciate it. And thanks for telling your story to all of us.
[00:37:55] Andy: Thanks, Laura. And thank you for what you do and please to your daughters. Um, I'm very proud of them. I've done a little research myself, so I'm very proud of all they've accomplished and all you and you guys have accomplished as parents.
[00:38:08] I mean, it's, it really doesn't get talked about enough, but you're doing a great job. Raising two strong young women. Who are both CF lawyers. Thank
[00:38:15] Laura: you. The original music in this podcast is performed by Kevin Allen. It's not complicated. He happens to have cystic fibrosis. We all got a well-reasoned
[00:38:24] Andy: fed.
[00:38:25] So no, one's got you for sure. Fading.
[00:38:28] Laura: But love and you are so all
[00:38:29] Andy: right. This has been the living with cystic fibrosis podcast for more information, and to learn more about the bond L foundation, check them out online@thevannellefoundation.org. That's B O N N E L L foundation.org. This podcast was sponsored by Vertex pharmaceutical, the science of possibility, and produced by JAG and Detroit podcasts.