My So-Called Lungs
Produced by: Joe Richman/Radio Diaries, Inc.
Diarist/Reporter: Laura Rothenberg
All Things Considered (NPR) 8/5/02



NPR Host: Laura Rothenberg is 21 years old, but ‚ as she likes to say ‚ she already had her mid-life crisis a couple of years ago, and even then it was a few years late. Laura has cystic fibrosis, a genetic disorder that affects the lungs and other organs. People with CF live an average of 30 years. Two years ago, we gave Laura a tape recorder. Since that time, Laura has been keeping an audio diary of her battle with the disease and her attempts to lead a normal life with lungs than often betray her. This is Laura's story.

[hospital sounds, beeping]

Laura: Hi this is Laura. It's about 11:02 p.m. I'm here in the hospital. I've been here for five days now. I'm in room 1004 this time. [Coughing] That's me coughing.
[hospital sounds, nurse comes in]

Laura: Hello. This is Carina. She's one of my favorite nurses. Yeah we can put that...
[nurse sounds]

Laura: I have a sort of status in the hospital. They don't even say my last name. It's like "Laura's coming in". You know, I've seen patients come and go, and I've seen nurses come and go. I've seen medical students become interns become attendings. It's like my hotel.

[talking to nurse]
Laura: Okay, Carina is going to stick me. Twenty-two and three-quarter needle. In we go. I don't feel a thing. Ooh that hurts.

Laura: I don't have to be on death's door to go into the hospital.

Laura: We got a nice blood return. Now we're flushing.

Laura: They call them tune-ups. It's almost like you charge the battery on your cell-phone.

Laura: And now we're going to hook me up to my antibiotics. [Hums Jeopardy theme]

Nurse: I'll be back.

Laura: Thanks.

Laura: Get back into bed here. My nice comfy electric bed.

Laura: I was diagnosed with cystic fibrosis when I was three days old. It was 1981, and uh, I guess at that time, my parents really didn't know how long I would end up living. The average life span of a person with CF was much younger than it is now. When I was twelve and thirteen, I met a lot of kids in the hospital with CF. There was sort of like a whole gang. You know there was a lot of CF kids. And we'd just play cards, and talk dirt about the nurses, and watch TV shows at night. Ride down the hall on IV poles. There was just this sort of bond you know?

Laura: Jeana died when we were thirteen. Damien died that year he was seventeen. Nikki Cooli died. Tamisha died. Elizabeth Florin died winter of twelfth grade. My friend Sophie died when I was in eleventh grade. She was one of my best friends with CF. And, my friend Marcy died this past summer.

Laura: Do you here how quiet it is? This is the sort of after hours calm. Everyone's asleep. I like nights in the hospital. Goodnight.

[hospital sound fades]
[car sound]

Laura: This is Laura back again. Dad and I are on the Bruckner. We're driving up to Providence. I agreed to let him drive. I just spent about for or five days in the hospital again for a partial bowel obstruction, so that was thrilling as ever. And luckily it was only a partial obstruction, so they we really excited about that. But of course at the moment I wasn't as excited about it because I had a tube in my but, and it's a little bit hard to be excited when you have a tube in your butt. Wouldn't you say dad? Why are you crying?

Dad: Well I mean, it's hard to talk about this, not knowing, what's going to happen next. And you go ahead with your life the best you can. [Sniffle] Pause it for a second.

[guitar. fade under]

Laura: So, now for a little lesson. Here is the deal with CF: Basically your body produces abnormally thick sticky mucus, that resides in the lungs. And the lungs are sort of the deadly part of the disease, in that after years of infection the lungs sort of get worn away and deteriorate. Most people who see me on the street wouldn't realize how much harder I work to breathe. Or even people who know me don't really realize it because, over the years I've got better and better at hiding the fact that I have trouble breathing.

[coughing]

Laura: It's funny sometimesÖsometimes I cough so hard that I can see stars.

[school, dorm sound]

Laura: So, I'm back here at Brown. Classes started on Wednesday.

[people talking, dorm sound]

Laura: I think that people who know me, who really know me, who are my friends, don't see me as someone who is sick. They see me as Laura, who's a sophomore at Brown. It's hard for them to imagine, you know, oh, she might not be here in a few years. They know I have CF. They know that it means you get very sick and that you die, but they see me and it's hard for them to make it real, because they don't want to, because no one wants to, because, you know, they want me to live forever, because I'm their friend.

[people singing in the background]

Laura: The truth is that even though I'm always thinking about health related stuff, I don't want to come off as someone who is purely thinking about health related stuff. I think that's kind of boring.

[singing fades out]

[oxygen tank sound]

Laura: Hi. Um, I'm actually wearing my oxygen, because it's easier to breathe with this on. So that's why I'm wearing oxygen. I'm not feeling very well. The past week I get into really bad coughing fits, and I just have trouble, you know walking. Feeling kind of tired. You know? It's frustrating. And even though people say that it's supposed to get so much worse, I don't quite understand how, like how, I'm expected to just watch it get worse. Like this is not okay: the fact that I'm in on a Friday night. I mean, I'm in college. I'm nineteen. I should have gone to this play I was supposed to go to. I should have gone to these two parties, that I was invited to, but instead I'm here. It's just frustrating. I want to be like my peers. But I don't know how. [long pause] Anyway, I think I'm going to go to bed.
[tape recorder clicks off]

[guitar music]

Laura: [clears throat] Hi. It's a couple days after my birthday, so I'm twenty. It just sort of all hit me today. I was lying on the couch in the living room, and the sun was setting, and I just, I just knew it. It was at that moment that I really felt that I wouldn't be alive at New Years. The last few weeks, I definitely felt that I was starting the dying process, and it's just a matter of when. How fast. How much at a time. It didn't make sense to push the limit, try to see how long I could last with these old lungs. So, I decided, I'm going to try the lung transplant. You know, there are risks with it. The obvious one of course being, if it doesn't go well, and I die. But I don't want to just go down hill without trying to stop it first.

[commotion, loud whispers]

Friend1: Where is she right now? Wait, so we're waiting until she takes the blinds off and then we're sayingÖ?

Friend2: Yes

All: Shhhhhh! [laughter. door opens] Surprise!!!!!

[screams and laughter, fades under]

Laura: All my friends came to this lung retirement party.

Friend3: We are gathered here, this evening, just to send Laura off with a hurrah, as she leaves Brown temporarily as a student. [sound fades under]

Laura: Well, I've decided to leave college, and go up to Boston - that's where the hospital is ‚ and wait there for my transplant. I have the poster that my friend designed that says "Thank you to the lungs of Laura for twenty years of exemplary service." So that's kind of neat.

Laura: [to friends] Well. That's a wrap.

[clapping and laughter, fades]

[phone ringing]

Laura: Hello. Julie? Hi. Yeah I haven't talked to you in a long time. Oh, it's okay, you know. I'm just sort of just sitting here waiting for lungs. Hehe. Yeah, but they've had what they are calling a lung drought. You know, there is nothing I can do to make it happen, short of going out and hitting someone with a car. Hehe. Yeah I do. Okay, I'll talk to you soon. Love you. Bye. [Hangs up phone]

Laura: Mom? Mom? [coughing]

Laura: My dad and my mom are very worried, they wish they cold do something. But, we don't spend a lot of time talking about it.

Mom: I remember even when you were younger, before even the question of the transplant came up, I watched you, you know, go through this. I watched you get very ill. Still, I have never really been able to experience what you've been experiencing, and at times, um, had no idea what you were going through.

Dad: I remember, that we were always wondering about how to talk to you about what the disease meant. And it never seemed to be the right moment. There was no reason to throw this at you. And then there was this particular time, in the news there was something about cystic fibrosis. And you were ah...

Laura: I was eleven.

Dad: You were eleven, and you told me "Dad, this'll probably be in the paper tomorrow, and why don't you cut it out for me, and I'll read it on the school bus." So I went to the paper, and exactly what I'd feared had happened. In the last sentence it said, "cystic fibrosis the most common genetic disease, and the average life expectancy is, eighteen years, or twenty one years," or whatever it was. So I thought, I can't have you, I can't have my daughter read this on the school bus, go on the school bus and read this that she is going to die at an early age like this, because by now you would understand what it meant. And so I thought to myself, I've got ten minutes to tell my daughter that she's going to die. And I went in the kitchenÖ

Laura: ...and I was sitting there eating...

Dad: You were having your Cheerios. And ah, I said to you, Laura, you know this illness you have, this cystic fibrosis, it's a serious illness. And such was the tone in my voice, that you kind of got it immediately. And you became very tremulous, and you said "You mean, I'm going to die?" and when you said it in that tone of voice, I completely broke down, and I was crying, and I said to you, and it's true, that, it's my dream that you should outlive me. And at this point, it was really remarkable, you were ah, put an arm around me. And began to comfort me. [pause, sniff] I got a phone call that afternoon that said, "Dad, that article, the point of that article, was that there's hope, isn't it. Isn't that what the point of it?" and I said "Yes Laura. That's the point of it."

Laura: I remember that conversation.

[scene fades]

[phone ringing]

Dad (on answering machine): You've reached Laura. The news this fifteenth of July, is that Laura is today getting her lung transplant. [beep]

[hospital beeping]

Laura: Well, it's about ten to eight in the morning. I'm here in the hospital. The sun has just come up. And the animal curtains a pulled across my window. But there's just a little bit of light showing through into my room. And it's shining on my toes.

Nurse: Hi there. I need to get you upstairs.

[beeping]

Laura: This surgery is going to happen, and it's weird. When I go in the OR, I always like to look at all the monitors when I'm lying on the table, and all the faces and the lights. The lights are really bright. There's sort of this feeling of, once the anesthetic is in, everything sort of hazing out, forcing you the close your eyes. And I always try to keep my eyes open as long as I possibly can, to remember the last moment that I was awake. And it's so hard to do that. It always wins out. [beeping ‚ fade out]

Answering Machine (female voice): You have one message. [beep]

Lauren, friend (on answering machine): Hi. My name is Lauren. I am a friend of Laura Rothenberg. She came out of the surgery well last night. She has beautiful new lungs, and more updates will come. Alright, bye-bye. [beep]

[Laura breathing slowly]

Laura: That sound.

[Laura breathing slowly]

Laura: Those are my new lungs. And this is a picture, it's in the OR, and they're taking the lungs out of the ice, and it's a close-up, and it's in like a metal basin-type thing. That's my lungs! Up close it just looks like a turkey, basically.

[leaving hospital sounds]

Laura: Bye. Thank you good luck with everything. Thanks.

Laura: I'm leaving the hospital after nineteen days, and it's very exciting.

[commotion, guitar music fades in]

Laura: Most people ask, how does it feel? Like how does it feel different to breath? And it's funny because it feels like a completely different body. Sort of everything about it seems new. I don't know it like I knew my body before. It's like a whole new ballgame.

[music fades out]

[blowing into the microphone]

Laura: This is Laura. And Iëm sitting here with my cat Gus who is asleep. I haven't talked in a while. On Monday it will be a year since my lung transplant. So, I'm happy I made it a year, but it is not the year that I'd dreamed of: complication, after complication, after surgery, after surgery, and rejection and lymphoma. I've had to get a feeding tube up back in because I lost so much weight. You know I think to get to the transplant, I really had to pretend that the transplant would do more than it realistically could do for me. My whole life, I've been searching for something to fix me. And it hasn't.

I definitely think about after I'm gone. I've always been scared that people will forget about me, but I'm also here right now. So its about trying to come to a place where I can just accept that things have gone the way they've gone, and accept that it's never going to be perfect. You know I'm well enough to go back to school. I'll be a junior. You know, I want to walk from my door to the Main Green, maybe even play soccer which I haven't done for like eight years. But I don't really count on anything anymore. I just go with the flow. I think that's ok.

[music]



© Joe Richman/Radio Diaries, 2002