THE PASSION & PURPOSE PODCAST:
"FIGHTING TO SURVIVE"
WITH CYSTIC FIBROSIS PATIENT LAURA ZELLMER

by Richard Janes


SHOW NOTES

"Fighting To Survive with Laura Zellmer"

Cystic fibrosis is an often life-threatening illness that affects the lungs and pancreas. Laura Zellmer was diagnosed with the disease at only 16 months old. Despite the staggering 80% infant mortality rate at the time, Laura defied the odds and survived. Laura is 43 years old, married with a child of her own, and received a double lung transplant last year.

In this amazing conversation, you with learn:

  • How Laura psychologically dealt with her diagnosis
  • What inspires her to take chances in spite of her illness
  • How she has learned to appreciate what many take for granted
  • What it was like to wait for her double lung transplant
  • How she stays motivated in maintaining her health every day.

Laura’s story has been a source of inspiration during my own health struggles and her determination to live life to the fullest is a lesson we can all benefit from.

I'm so excited to share this with you!

Check out the episode below or Click here to Listen & Subscribe on iTunes .

LISTEN TO THIS EPISODE: SOME QUESTIONS I ASK LAURA:

  • Where did your propensity to risk come from?
  • How often do you think about the lung donor who saved your life?
  • Do you think you would be here today if your son didn’t give you a sense of purpose?

LINKS FROM THE INTERVIEW:

WHAT DO YOU THINK?

I'd love to hear your thoughts on this episode. Who was your inspiration for following Passion & Purpose?

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Podcast Transcript:

Richard Janes: My guest today was born on December the 12th, 1973 in Flushing, New York. The second daughter to a bank account and a librarian, she was plagued with illness as a young baby; and by month 16 the family heard the devastating news that their daughter had cystic fibrosis, a chronic disease that causes the body to produce thick and sticky mucus that clogs the lungs and obstructs the pancreas.

At the time of diagnosis, the infant mortality rate was around 80 percent. Doctors told the family that if by some luck she managed to make it past infancy, the odds were even higher that she wouldn’t make it through elementary school. But make it through elementary school, she did. And joining for this podcast today is a healthy, thriving 43-year-old woman who married in 2004 and against all the odds had a son of her own in 2007. And then adding to her continued battle against cystic fibrosis, she received a double lung transplant just a year ago after her own lungs fell to just 18 percent capacity, and friends and family were booking flights to say their final goodbye.

My guest today is Laura Zellmer. Laura’s struggle has been monumental. And most or many of us we’ve bounced around this earth trying to figure out who we are and what we’re really passionate about, Laura had a sense of passion and purpose from a very young age--and that was to live life and stay alive. Now, we’re all going to die at some point but for Laura, that “some point” was often in the not too distant future.

So I started off by asking her how she psychologically dealt with facing such a short lifespan.

Laura Zellmer: When I was younger, the stories that you heard about people with CF were not encouraging at all. You know, maybe people live into their teens. So I had to figure out, “Okay, I know that’s a possibility but I’m going to keep going and doing the things I want to do,” and luckily, I had my parents and my family that were all super supportive and my mom (who is a really big worrier) somehow let go and let me really live and have a normal childhood, which must have been really hard because as a mother myself, I I know you really want to protect your kids and shield them from so many things and when you know your child has such a risk of getting sick and ending up in the hospital to just even, like, let me go to school and be amongst all the kids that, you know, had kids that had little germs. And so to just let me out and, like, by them really just embracing living, I was shown that as an example and I never let my disease stop me. And so I just kept pushing and I kept thinking “well, if I don’t have that much time, I’m going to pack in as much as possible into this short time and do as much as I can.”

Richard Janes: A simple cold or flu could have a major impact on you, correct?

Laura Zellmer: Yeah.

Richard Janes: But you’ve made it your life purpose to truly live life. One example is climbing Mount Chester, 14,162 feet. Where did this propensity to risk really come from rather than shy away?

Laura Zellmer: I think the fact that I thought I wouldn’t be alive for that long. I figured, “why not take these risks? Because I don’t have this huge life in front of me.” Well, as a younger person this is what I thought. So I might as well seize any opportunity that looks appealing and seems exciting and I kind of went for it. I mean, it might not have been the smartest thing because I was not prepared. I had not trained. I didn’t make it to the top because the altitude really started to affect me mentally, and luckily, I was hiking with my friend and she realized that I wasn’t making sense in my sentences and so we turned around. But we made it to around 12,000 feet. But I think I just felt this drive to pack in as much as I could in my short little life and a lot of that involved not really thinking and just doing.

Richard Janes Commentary: So here’s the thing. Most of us go through life with a blind faith that there will be a tomorrow, that we have time; that we don’t need to, in Laura’s words, “pack as much as we can” into today. But what if we did start thinking like that? What if we were told that there was no retirement? That there was no next year? That we wouldn’t be able to spend another summer with our kids or holiday with our partner where we’ll really get that time to connect away from our busy lives? If you knew you didn’t have that time, what would you do today? This week? This month? That you’ve been putting off. What if you stopped thinking and started doing, living those dreams of a passion and purpose-filled life that you haven’t fully leant into? What have you been taking for granted will be here tomorrow? Because for Laura, she always knew she didn’t have that luxury to take anything for granted.

Laura Zellmer: I really get amazed by the sunset. I love it when the moon comes out. Like, I actually feel in awe of those things and I think so many people just kind of breeze by them. And I stop and try to pay attention to the world around me because I think that through all these challenges and really realizing how maybe little time I have here, I can truly appreciate so many little things in life that other people just kind of move past. And so, I feel like it’s a gift that was given to me like, “okay, you're going to take on these challenges but here’s something in return.” This perspective as to why we are here and appreciating just little moments with my son, with my husband, and with my family, and appreciating the people around me. I feel very lucky to have that great sense of gratitude for them.

Richard Janes Commentary: It's something I hear time and time again from the 1 out of 10 people who do make a change when faced with their own impending mortality. That they acknowledge the fact that however bad what they had to go through was, it’s given them insight into the value of life and that they are enormously grateful for that. And for Laura, just 18 months ago, that gift of insight almost came with the ultimate price. Over the preceding years, Laura had grown sicker and sicker, and no amount of treatment was staving off the deterioration of her lungs to the point of only having 18 percent capacity. Now, just for a moment, I want you to take a deep breath and imagine only being able to have taken in just 20 percent of that air, never being able to take in any more. Just 20 percent of that breath. The energy, the exhaustion, the willpower that is required just to stay alive is immense. And the only option available to Laura at this point, the only option that could possibly save her life was a double lung transplant—a 6- to 12-hour surgery where they remove her failing lungs and replace them with a healthy lung of a recently deceased donor. After fighting to medically qualify for the transplant, the doctors finally gave Laura the go-ahead for her name to be placed on the waiting list in the hope—in the hope that a compatible pair of lungs could be found. But the clock was ticking. Time was of the essence.

Richard Janes: So we go to a stage where you qualified for a lung transplant, Laura.

Laura Zellmer: Yeah.

Richard Janes: You got on the list.

Laura Zellmer: Mm-hmm.

Richard Janes: And at that point, it was you can get a phone call at any moment that there is a pair of lungs available for you.

Laura Zellmer: You have to be within 4 hours of the hospital and you have to have your phone with you at all times. And sometimes you can get calls and they’re called “dry runs” where they call you and there are possible lungs but then they say, “We’ll call you if it works out and you can come in,” or they call you and say “just come in” and they prep you for surgery and then it doesn’t work out. And I had several of those which mentally are very hard to deal with. That it’s very crushing to think that you are getting this life-saving surgery and then it’s pulled out from under you. So I had about four of those. By the end, right before I had the transplant, I think my lung function was down to about 18 percent.

Richard Janes: And why were the ones not working out where you got the call?

Laura Zellmer: So sometimes they just are not feasible because they are damaged in some way. They are just not healthy enough to then be put into my body. And with most people when they do it, the people that they take the lungs from are already brain-dead and so they have been on life support and so then they pull them off the life support and then they can extract the organs. But in one case, the person died on their own but it took too long for the lungs to then be viable after the death, so they were deprived of oxygen for too long. So that one did not work out. But in the other cases, they just weren’t viable so they just kind of tell you like “these are not the lungs for you.” Sadly, sometimes I go on holiday weekends there’s more accidents and so sometimes there’s like higher volumes of organs that are available.

Richard Janes: That must be a hard thing for you to also deal with in your head in that you're wanting to get a phone call, but the other side of that.

Laura Zellmer: Completely. I mean, because then you feel so horrible that in order for you to live, somebody else has died.

Richard Janes: How much do you think about the donor now? Is that something that factors into your head?

Laura Zellmer: Oh, yeah, I totally think about. Like, who am I carrying with me in this journey? Mentally, it does mess with you to know that it’s somebody that has passed away that you're getting the organs from. And I think that I need to live my life as fully as possible because they gave me this gift, and I think it would be such a waste of their generosity and of this other person’s life if I didn’t embrace that. You know, I just feel horrible for their loss and sadness that goes with it but they were incredibly generous to give me this gift. You know, I want to treat these lungs with utmost respect and make sure that these lungs help me live out my best life.

Richard Janes: I have to say that for full transparency, even with everything that you had gone through, I always thought I should be a donor and I had never signed up. And this morning, as I was doing the research and thinking about you, thinking about the fantastic time we had last night with Kevin and with Everett, I couldn’t believe that I hadn’t done it. And so I got online and it took me 60 seconds to register, so I’m now registered as a donor. And it is so easy to register.

Laura Zellmer: And I think that there’s so many people that kind of think the same way you do. Like, “Oh yeah, I would totally do that,” but they just haven’t done it. And there’s sadly so many people that do die waiting for organs and there’s a shortage. And there needs to be more people that just take the initiative and sign up. Yeah, it doesn’t take that long. And there’s all these parts of our bodies that we don’t even think can be used by other people. You know, your eyes. They can use parts of your skin. Like they can use so many parts of your body that you don’t even think about that could help other people.

Richard Janes: After the surgery, the double lung transplant, the doctors were amazed at your focus and determination and that you were taking your first steps again within hours of the 8- or 9-hour surgery that cracked open your chest and put these new lungs in. How was that first day?

Laura Zellmer: I had a purpose, and that was to get up. Because I knew that the more you pushed, the stronger and quicker the lungs could be working fully and that would help everything in my body and help the recovery, and so I was on a mission to be walking and do walking as much as possible and to be building strength and muscle. So after those first 4 hours, then I felt like everything was manageable. Those first 4 hours were the worst but it was a finite amount of time and then things were uncomfortable and there were times where like the pain was really intense, but I knew it was going to get better and I knew if I kept working and doing the things that they were telling me I needed to do, that it would get even better even quicker, and so I really pushed myself to be that laser focused to get better. And then they released me after 10 days from the surgery. But it was a little early and my body was not quite ready to leave the hospital because I was really anemic. So 4 days later, then they put me back in for another 5 days, and then after that time in the hospital, then everything was amazingly pretty smooth sailing.

Richard Janes: You have an amazing dedication and amazing willpower to actually meet the doctors and that medication. Where does that come from?

Laura Zellmer: So I’ve seen how much better it makes me feel. Like it is tangible when I exercise, when I do these things, they help. And so I just really listened to my body and I realized “okay, doing things that are counterintuitive don’t help me, like, just because somebody else is.” And as an adult, I think it’s easier to embrace those things and be like, “well, even if I wanted to do that, I have to do this other thing.” As a teenager in your early 20s, that’s really hard because all you want to do is be like everybody else. You don’t want to have responsibilities. You don’t want to take yourself out of, like, the social picture and then have to go do these treatments. So that was I think the hardest time for me to really embrace being a good patient. But as an adult, I just see the value in really taking care of myself and it’s like “why would I not choose to do these things that make me feel better so that I can have this longer life, so I can actually do the things I want to do?” And by taking little bits of each day, then I don’t end up in the hospital and lose weeks at a time. And so, it’s like just committing to the little things then saves so much other time. So it’s really just kind of like a logical process where you're like “why would I not choose this?” Why would I go against everything that’s going to help me to live a better, stronger life? I have heard stories of people that totally have had their lungs for 20 years and I plan to be one of those people.

Richard Janes: Are there days where you struggled with taking that step?

Laura Zellmer: Oh yeah. I mean, there’s days where the last thing I want to do is exercise. And with CF (cystic fibrosis), I also have diabetes. And so the last thing I want to do is give myself a shot or choose the healthier option versus wanting the donut. Every day there’s things that I have to work on and it’s a choice. Am I going to choose the healthier option for myself? And there’s days where I don’t. We all are human. Nobody’s perfect. But more often than not, I choose the healthier way to go.

Richard Janes: It seems like there’s a pattern emerging here and that is that one of the reasons why you are still here today is because you are very good at setting little goals and achieving them day by day versus being over faced by the “mammoth mountain”.

Laura Zellmer: Completely. And that is definitely something that I’ve always done and it kind of takes me back when I was younger, I did swim team and I hated it but it made me feel so much better. It’s so good for your lungs. And I would kind of tell myself like as I was swimming, I’d be like “okay, Laura, you're going to do these—these two laps.” And I would kind of just break it down in my head so I was never overwhelmed by how much I had to do, and I think mentally that really helps you because if you think in such a big scale, it’s always going to be overwhelming. But if you just think of when like next little step, then it breaks it down to where it’s totally feasible and “okay, I can do that.” And I definitely have done that a lot in my life and I think that that has helped me to get to where I want to be.

Richard Janes Commentary: Now, we all have things we want to work on to improve our lives but in today’s culture, we’ve been conditioned to expect fast results: Microwave dinners. Five-minute YouTube tutorials. Communication at the touch of a button through email and text. Being flown halfway around the world while we’re asleep. Or the Bitcoin investing that make overnight millionaires of 16-year-olds. When we can’t see a quick result, many of us discount the value and the benefit. We’ll spin our wheels and extoll enormous amounts of energy trying to find that quick fix—worrying that we aren’t making progress, fretting that another year has gone by and we haven't done what we wanted. Now, a common question I ask my audience when I’m giving talks is “How many of you could run 365 miles?” Now, people laugh. People shift uncomfortably. But very rarely does anyone see that if they just run 1 mile a day, at the end of the year they would have completed what seemed like an enormous, preposterously crazy goal of running 365 miles. With Laura, she mastered that chunking down of massive goals into bite-sized manageable actions that simply require regular attention. And in my experience, it’s this ability that is often present in the 1 out of 10 people who actually manage to make that change. It’s this ability that had Laura excelling so quickly after having such a massive surgery.

Laura Zellmer: So within probably like 4 weeks of the surgery, I was hiking the hills.

Richard Janes: Okay, okay. So at this point I should point out that we're not just talking about a nice country hill, right? We’re talking about the crazy inclines of San Francisco city streets.

Laura Zellmer: And I would give myself little goals each day like “okay, I’m going to make it to the top of that street.” Because, you know, it started out as like a gradual hill and, originally, I had been walking on flat and then I’d be like “okay, I’m going to do the small hill.” And then the next day I’d do like the even little bigger hill. And I just had these little goals for myself like “okay, I’m going to go one block farther today.” And as long as I just kept pushing myself, by the end of the 6 weeks I had hiked up Mount Sutro and it was amazing because I had not been able to do those things in years. I love traveling. And when I was so sick and not able to leave mostly my house, I mean, at the end, leaving my house was just a huge production. And so now I’m able to travel again, and to be able to take my son traveling, it just feeds my soul. So we stayed in Europe for 5 weeks and I had to clear that with my transplant doctors and I was a little nervous taking the tube and being in crowded places that I had my mask, I’ve got my hand sanitizer, so I just make sure that I’m really prepared but I don’t want it to stop me from really living. And I think that there’s always risks involved when you change because you don’t know what’s going to happen and so you have to be open to change; and I think that that’s just any type of change is a little bit risky. And I think so many people are scared of change. But if you don’t open yourself up to change, you might miss out on so many things that are out there.

Richard Janes Commentary: And that’s the other side of the “change or die” equation. On the one hand, we don’t change because the end goal is so daunting that we think it’s impossible, but on the other is this thing called fear. And fear, as we’ve all experienced, is a cruel master to be a servant to. But something most people don’t realize is the difference between how our conscious and subconscious approaches fear. You see, our conscious mind sees something that we should legitimately be fearful of. It judges the risk and guides us into action. The tiger in the jungle racing towards us while it spurs us into running—it's a real fear. The rollercoaster ride that’s going to drop us 80 feet—it plays to the fear. But consciously we know there are safety provisions in place which is why we agree to be strapped in, while the subconscious mind doesn’t have a judging faculty. All it knows is that you're alive today doing what you're doing and you are surviving. The unconscious mind can’t rationalize something new as good or bad, so it tries to keep you where you are. It’s why we see people making the same mistakes over and over and over again, settling into unhealthy habits. It’s why for so many of us, we are the 9 out of 10 who can’t change, letting our subconscious pull us back to old habits. But the key is to reprogram the subconscious, and in my opinion, reprogramming it around your unique purpose versus the normality of everyday life. Now, for so many years, Laura’s purpose was simply to stay alive and find passion in the small moments life presents to her—the sunset, the full moon. But then in 2007 something came along that took that purpose to a whole new level and she was no longer fighting for just herself.

Laura Zellmer: There’s no giving up when it’s for your child. You have to keep fighting. You know, the mother bear comes out, like, nobody is going to protect my child or love my child like I do so that’s why I’ve got to be here, and I’ve got to be here to see him through this. And I brought him into this world and I’m going to make sure that I get him to the different stages of adulthood and I get to see him thriving. And so if I had to use all this energy to get out of the house, it would have to be for Everett because I wanted to see him happy because that made me happy. And so, if I was invited out with girlfriends, a lot of times if I didn’t have the energy I’d be like “I can’t go.” But if it was something that was like a sporting event for him, I was going to show up and I was going to be there because I knew that that made him feel comforted, that I was able to show up and made him happy to have us there and so that then made me happy to see it in him.

Richard Janes: Do you think you would be here today if it wasn’t for having that purpose around Everett at that moment?

Laura Zellmer: I hope that I would have found some other purpose. I mean, I’m not sure though. Maybe that is what carried me through and I think that even when I was ready, if I didn’t have him maybe I would have given up. But he’s a huge driving force and I think we all do many things in our lives for our children that we might not have thought we could do without them. I’ve always been a fighter, though, so I might have figured out how to get myself through it and for my parents, for my husband. I think that so many times you are willing to take on pain and things if you know that it helps the people around you that you love. So even if it hadn’t been Everett, I might have done it to hold on for them. What’s interesting now is now that I am healthy again, all of a sudden, I’m starting to think again more how am I going to live this for myself as well. I think that when I was sick, that was my purpose, was to be here for him because that’s all I had the energy for. I had to pick one thing and it was “okay, well how am I going to focus this little bit of energy I have? What is the most important thing here?” And it was him. And now that I’m feeling good I am starting to really think what are my goals that are going to make me feel like I am contributing to this world. Not only to him, you know. He will always be my, like, number 1 purpose but I also and to a point where I am excited to find things that inspire me as a person to move forward and take risks in my own life as, hopefully, starting a foundation, to encourage people to be donors; and these things that excite me as an adult and as a person.

Richard Janes: Today, sitting in front of me you seem fitter and healthier than I have ever known you. When I was in my deepest pits of my own illness battling with ulcerative colitis, Amy and I would often talk about your strength and your determination. Your passion for life and determination of purpose to stay strong and healthy no matter how uncomfortable or inconvenient, a mentality of “no excuse” has been a massive, massive inspiration to me and I’m sure countless, countless others that have followed your story. And part of the reason why I’m sitting here today, as healthy as I am and doing what I do, is because of the inspiration that you've provided and how you’ve lived your life and what you’ve gone through. And I just want to say thank you so, so much from the bottom of my heart.

Laura Zellmer: I’m glad that we’re sitting here talking to each other and both feeling good. So yeah, I’m glad. I didn’t know I was helping you but I’m glad I did.

Richard Janes: Thank you for joining me on the podcast today.

Laura Zellmer: Thank you for having me.

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