non: [00:00:00] Welcome to the ATS Breathe Easy, the latest podcast. Here's your host, Patt.
Patti: Hello, and welcome to another episode of Breathe Easy, the latest. We have a great show coming up with patient advocate, Len Geiger. First, here are the latest headlines. The measles outbreak is still making headlines. Now with the death of a second child in Texas. Experts agree that vaccines are effective despite what the skeptics say.
If you or your child are not vaccinated, see your healthcare provider today and get the shot. Your phone might be the reason you can't sleep. Our cell phones have become hard to live without. If you live with a teenager, you know that this is [00:01:00] particularly true. A new study in Frontiers in psychiatry found that screen time in bed was associated with an increased risk of developing insomnia symptoms regardless of the screen activity.
And now for some good news out of Germany, funding freezes and mass layoffs are crippling the us, but help may be on the way. German Research Institute Biomedx is stepping up to help us scientists with its matchmaking program. The program aims to match researchers with industry partners. We'll be right back.
non: The ATS 2025 International Conference returns to San Francisco, May 16th to the 21st. Members get a discount on conference. Registration. So become an ATS member or renew your membership to take advantage of these savings at ATS 2025. You can network with colleagues. [00:02:00] Find your next research collaborator.
Listen to patient stories and get inspired and be among the first to learn about breaking news in the pulmonary medicine. Register now to attend. Go to conference.thoracic.org today.
Patti: Welcome back. We're joined today by Len Dyer, a patient advocate set to deliver the plenary keynote address at the ATS 2025 in San Francisco in just a few weeks.
And happy birthday to you, you just turned 60, thank you. Six, correct. At the age of 35, did you ever think that you would make it this long?
Len: No, absolutely not. Absolutely not. Um. Getting diagnosed with alpha one antitrypsin deficiency at 35 years old and finding out that the, at that point, the average lifespan was about 56.
No, I didn't think that [00:03:00] I'd be living this long and, and especially to be in the shape that I'm in now. So it's, uh. I'm surprised every day.
Patti: Yeah. And what, what do you credit that to and what will you be telling people who are attending the conference? , The miracle of modern Medicine is the biggest thing I think.
Len: So the, the medication that I was able to use slowed the rate of my decline. That gave me more time. To be able to wait long enough for that second miracle of modern medicine, which was my lung transplant. So all of those things. And then, yeah, there's a little bit of work involved in it and keeping myself in shape and eating right and being active has been part of it.
And then. As, as my father said many years ago, son, we gave you some bad genes because I had a genetic lung disorder. He says, but damnit, we gave you some good genes too. So I, I, I attribute, you know, [00:04:00] some of my success to that as well.
Patti: Your lung capacity was 15%. You probably couldn't do much at that time, right?
He, he said that gonna, the bathroom coming back, even lying in bed was a, an enormous torture.
Len: That was right before the transplant. So at about 43 years old, 42, 43.
Patti: That was the worst of it. And it took you were on a wait list for eight years, correct? Like five, five years. Five. But still very long time.
Yes. And so it just came at the right time. You got a call from Virginia. Tell me about that.
Len: Getting the call from the University of Virginia that was, that was unique because I'd been waiting for such a long time. I, I'd hoped that I was gonna get a call to come get a transplant, but I didn't know that I was going to get one, and I certainly didn't know that I was gonna get one that [00:05:00] day.
And, um. To have them just interrupt my day by saying, Hey, are you ready to come and get your transplant? I was like, hold on. I don't know. I, I know I'm very sick. I know I need the transplant. I, I, I know it's a good thing, but what I wanna do is call everybody I know and say, what should I do? Because I don't know, and I couldn't contact anyone.
I had no time. I was literally on hold on the phone and. All these crazy thoughts that went through my head. And the one that stuck was the simplest of all. And it was just that I haven't smiled for over six months because I've run outta reasons to smile. And so I said yes, and then they flew me up to uh I was living just outside of Atlanta and they flew me on the Learjet Air Ambulance to rush me up to the University of Virginia in Charlottesville.
And in about two seconds it seemed like I was in the operating room and shaved and [00:06:00] beta dined and the, the anesthesiologist went over and said, are you ready for this? And I was like,
Patti: okay.
Len: And, but
Patti: everything went black. Miracle signs. But this didn't come easily. 'cause you said there was a point where your entire world.
Came crashing down, crash. You got a divorce, you couldn't meet your bills. Are these things that some of the patients are going through that you have come across being an advocate now for lungs?
Len: Yeah, this is, this is one of the things that happens with a number of different diseases. Alpha one among them is that as you are entering or in the middle of your prime earning years, when you're making the money, that your entire family is gonna be retiring on.
You get hit with something like this and it just destroys your world so much of the time. You, you, you can't, not only are you physically incapable of doing a lot of things, [00:07:00] but you're physically incapable of, of working doing what you were doing and, and you lose your job and you suddenly, you're on disability with that, you know, social security, disability income, which is a blessing, but at the same time, it's not really enough to live on.
And, you know, I, I lost my house. I lost my wife, I lost my health, I lost my car. I lost everything over this extended period of time. And you gotta remember I was 35 and I was like, on top of the world, I, I either had or was on my way to having pretty much everything I'd ever wanted or needed in my life.
And it all got taken away bit by
Patti: bit by bit. So it was difficult to. 1994 to 2002 when you get Yes. The transplant and things changed, correct. Oh, when I got the transplant? Yeah.
Len: So like what you were saying, my, my lung function was about 15% of, of [00:08:00] predicted just before the transplant and five days after the transplant, they had me back on a treadmill.
In, in the hospital, in, in the pulmonary rehab unit. And, and they started me off at about one and a half miles an hour because that's about how fast I could go with oxygen on before the transplant, which just is a very slow. Walk
Patti: pulled me a way was that you were working out even with 15 pet, you know, most people, I dunno.
My couch,
Len: I'm not really sure I'd call it working out. I was moving, I was trying, I was struggling and, and I was watching my oxygen saturation. I was doing it logically and carefully, but but yes, I, I pushed myself all the way up until the end. I, I think it really paid off because when you're in shape and, and, and have something like this, your, your ability [00:09:00] to recover from it is just, it's amazing.
It's so fast, you know, just suddenly you're oxygenated and you can breathe and you're like,
Patti: body is an amazing machinery. Yes,
Len: it's incredible. Just incredible.
Patti: Okay, so then you decide to fly like a Superman and, and,
Len: okay, so, so here's the deal. Here's the deal.
Patti: It's not
Len: my fault.
Patti: Yes. You went mountain biking and you had another accident where you hospitalized, correct?
Len: Yes. So, so the idea was that after the transplant, I can breathe now, but unfortunately I had lost both of my hips. 'cause of prednisone use. I developed avascular necrosis and had two artificial hips. And these are the old time hips from 25 years ago where you can't run on them. It's not like current technology.
So it was it was, it was difficult. [00:10:00] And so I had the transplant. Now I can breathe and I want to really push myself and I wanna run. I can't run because I've got these fake hips and I couldn't walk fast enough to make myself short of breath. I couldn't raise my own heart rate. So I decided somehow that I'll take up mountain biking.
'cause it sounds like a great idea, you know, for the guy with two fake hips and a double lung transplant because nobody wrecks their mountain bike, do they? Which of course I did three months after my lung transplant. Major. Superman accident, flying over the handlebars way down a hill, landed on my side and shattered my femur, which was a, a big mess.
And the, the worst part was that, and, well, first of all, there's a little bit of comic relief I need to throw in because my buddy dialed 9 1 1 got the EMTs to, to show up and they had to hike up the mountain biking trail to get to me. And they laid the stretcher down next to me and they said, [00:11:00] Mr.
Geiger, before we touch you. We're just gonna take a brief history. I thought that was the funniest thing I'd ever heard. I actually, despite being in gut-wrenching pain, I started laughing. And then when the morphine kicked in, it got even funnier. But they they did get me off of the mountain and, and they put my leg back together.
And unfortunately, I, two hours after the surgery, I threw a, a fat pulmonary embolism and I stopped breathing. And ended up on a ventilator in an induced coma for three weeks, which is usually not survivable. And somehow I ended up, was able to start breathing on my own. I was, I, I was not responsible for that.
I wasn't there. I was totally unconscious, but started breathing on my own and extubated myself, which is kind of par for the course, I guess. And, um. And they woke me up and sent me home four days later. And then I had to recover from
Patti: all that. [00:12:00] So that was the next journey. So then you decided to run the Peachtree Road Race, which went right below my condo on Piedmont Park on 12 Street.
Len: That was, that was my comeback. It took me 10 months to get to that point. I had a lot of rehab learning, you know, getting my leg. Back in shape, getting my body back in shape 'cause I'd lost 40 pounds in the hospital. And doing the peach tree was something I told my friends I was gonna do while I was still stuck in a bed, you know, unable to move.
And they laughed and laughed. But 10 months later, on the 4th of July, I was there, Atlanta doing the Peachtree, which I didn't run because I can't run. I did this ugly race walk thing. You know, it's the, the thing that people actually watch the Olympics just to make fun of the race walkers. It was that kind of thing.
So
Patti: it seems to me that you're, you're pushing yourself, you're beyond the boundaries. Most people's [00:13:00] boundaries.
Len: It's, I, you know, it's funny though. I know a lot of people like that, that push themselves harder, that I can push myself. Yeah. And so to me it's not like an extraordinary thing. I guess my goal is, is to get the people who are
Patti: sitting on the sofa saying, I can't do that.
Who haven't tried to get up off the sofa and try,
Len: you know, do something. Everybody can do something more than they're doing right now.
Patti: This is very important to you to speak at this at ATS 2025 and International Conference. Why is that?
Len: Well, my primary focus at this meeting is gonna be number one to raise awareness of my lung disease because it is a vastly underdiagnosed and misdiagnosed disorder and testing is very, very easy.
It's, it's, it's the simplest thing in the world, and [00:14:00] yet there's so much pushback for, for routinely testing patients for this. There's a lot of misunderstanding, a lot of miseducation a a lot of unfortunately lack of real awareness, even within the primary care community, which is realistically where most of these patients are as I was diagnosed, luckily by a primary care doctor.
Yeah. And yet that's not what happens most of the time. They get sent to a specialist and a pulmonary specialist who hopefully will, you know, they're like the backstop. They're, they're the end. That's the end of this journey. Pulmonary specialist doesn't diagnose this patient. They're never going to get diagnosed, and they're going to continue to decline and maybe they'll get a lung transplant and maybe they'll die.
And and I think that's just a, an awful shame and no reason for it.
Patti: What's really poignant is a quote that you said you wanted to find the donor of your [00:15:00] lungs, and it turned out to be a, a teenager. You named your daughter after her and you carry a picture around right? With, with you? Yes. And that you didn't know whether you are carrying Corrine around with you or she's carrying you around with her?
Len: Yeah, it's, it's, she saved my. And it's my job to preserve her memory. I mean, this is the, this is the biggest thing she ever had a chance to do, unfortunately, was to save
Patti: my life. And so that's, that's something I cherish and will always cherish. I mean, and you've connected with her parents and you run a race with her father who was a runner as well.
Yes. What made you follow. Oh, [00:16:00] awesome. Did you, what made you decide to why did you want to find them?
Len: Oh, 'cause it mattered so much to me. It's like, I, I need to say thank you. I need to, to let this family know what they did for me and,
Patti: you know,
Len: and that their, their loved one didn't die
them, and.
What they did was such a selfless act, this decision to donate everything that they possibly could because I mean, this is one of the worst things that can happen to anybody is to have to lose a family member and especially a child. And it's just like this blackness, this deep darkness and organ donation raises this possibility of a light.
Somewhere that maybe someone will benefit. [00:17:00] And she ended up saving five people's lives just straight up with solid organ transplant plus everything else that was donated, including her eyes and tissue, and, and they did it totally selflessly with no. With no restrictions on, I want the person to be this type of person.
I want them to be a, a good person, or I want them to be white or black or this nothing just here.
Patti: And then I got a chance to, to meet them and say thank you. And
Len: we've been just, this is my other family. And we've been like that since a year and a half after the transplant when we first met.
Patti: Your daughter's name is Ava and she's 19.
Len: She's 19 years old. Lives in New York City now. Yes. She's a big girl going to school freshman.
That's awesome. Yeah. Scary.
Patti: What, what else are you planning [00:18:00] on saying at this conference that I didn't ask you? Live life. Yeah, please. Yeah, live a big life. If you can do the things that, that you think you can't, at least try to. I, I'm, I want to, it's gotta be a lot of healthcare
Len: professionals. I want browbeat them just a little bit about not testing for my disease. I wanna thank them for testing for my disease. I want to thank them for, for being healthcare providers, for saving so many people,
Patti: and again, for that miracle of modern medicine.
But I want to,
I want to get them emotionally involved and, and [00:19:00] not just alpha. Not just from a
Len: medical standpoint, from an emotional standpoint, I want them to care. And I know they care, but I want them to like care
Patti: with a different deeper intent with their heart yeah, with their heart. Think it's gonna be a blast.
We'll see how it goes.
And listening to you, and it's very important to you. You already expressed that to me. Now, lastly, before we say goodbye you did something for your 66th birthday, and explain to me why you did that. And, and it's significant.
Len: So, um. Hmm. Do you wanna see it first? Yeah. Okay. Okay. So this is, I, I had [00:20:00] done a week before my 66th birthday present to myself.
And I hope it all shows well,
Patti: it's, it's read a large
Len: in Yeah. So it's it's a pair of lungs.
Patti: Yeah.
Len: With a tree of life growing out of the top of it. Yeah. Roots coming out of the bottom of the lungs growing into me. And what this signifies is not just that that corrine's lungs gave me life, but also that in the long run, this tree has grown and is shading and protecting these lungs and keeping them healthy, and keeping her alive.
And as. Her lungs have roots growing into me. We all become one. And this is [00:21:00] as much for her family as it is for me and as much for my daughter as it is for me. And to, to, to see, you know, this is to again, life coming from this
Patti: one decision to be an organ donor.
Yeah, anything to add? So you'll be speaking to people's hearts and emotions, and you will be telling them to live life. And you will also address this the importance of being a donor.
Len: Yes, that sells itself.
non: Thank you for joining us today. To learn more, visit our website@thoracic.org. Find more ats, breathe Z podcasts on transistor, YouTube, apple podcasts, and Spotify. Don't forget to like, comment, and subscribe, so you never miss [00:22:00] a show.