In this transcribed interview with my father, Roger Swanson, a hospital architect, he recalls the event in his life that has affected him most. There was a time when his sister's daughter had been gravely ill, and needed a lung donation.  Since Roger was very close to his sister, he volunteered to do the transplant...

What comes to my mind right away is something that happened about twenty years ago and, uh, it was...had to do with the health problems of my sister’s daughter, Ashley, your cousin. At the time, she was in high school. She was a senior in high school. She was eighteen years old. She had suffered all of her life with a congenital disease, cystic fibrosis, and, um, it reached a crisis point at that time when she was about seventeen, and it was determined that her lungs were very badly damaged from the disease and that her only hope for survival beyond a year or two was to have a lung transplantation (clears throat).

So Ashley was on the waiting list for a lung transplant for about a year. [Later on,] we got a call, and they, uh, had a donor and the lungs came and Ashley went into the hospital. However after a few days, they started being rejected, and they weren’t working well. So she had to be put on a ventilator and, um, (clears throat) to help her breathe. And so, anyway, they determined that the original transplant wasn’t going to stick and that they would have to do another one.

So the decision was made to do what’s called a living lung donor, and I told my sister that I would be very happy to be one of the donors. And her husband, Rusty, was going to be the other donor. I was a good candidate for a lung donation because I had huge lungs, I used to be a marathon runner, and they tested my lung capacity and the respiratory therapist technician that tested me said “Whoa! I’ve been doing this for eighteen years and you have the biggest lung capacity of anybody that I’ve ever tested. And I said “Good, I won’t miss it then”. (laughs) And so without even packing a bag, I left work, and went home and told Nancy that, that it was time to do it, and she was not, she was less than excited about me taking the risk of course, but she understood that it was something I very much wanted to do for my sister and for Ashley and so um I went.

I didn’t have a suitcase so I remember going downtown and shopping (laughs) and I had to buy some, you know, underwear and pants and stuff like that. It was an early morning operation, and of course they did all the pre-op testing and all of that stuff, they did that the days before and leaving early in the morning. And so Rusty and I were in the adult hospital, and Ashley was in the children’s hospital and they were connected but they’re quite a long hike across a bridge from one to another. And so they harvested our lungs first, at the same time in two separate operating rooms, and they carried them over in a, in a, like a stainless steel bowl (laughs) across the bridge to the operating room in the children’s hospital where Ashley was waiting in, and they cut her open and they were ready to receive them.

And so afterwards, I remember very well waking up and you know, the doctor coming in and saying that “It’s been successful, so far it’s just been doing great and she’s doing fine”, I just remember how good I felt, plus I was on morphine, so I probably would have felt good no matter what but, but then they put me in a room next to Rusty, and it was a semi-private room and there was another person in there that had a lobectomy, but unfortunately his lobectomy… he, he had cancer.  I remember they came in and talked to his wife, and there I was, they just pulled the curtain between us and basically told him that he was gonna die in a month and there was nothing more they could do, and they were all crying and I was, you know, I was joyful because I had done this thing that had saved somebody’s life and uh so I immediately thought “This is not right, I shouldn’t be in this room, Rusty and I should be together, right?  Cuz we’ve just been through this together.”

Anyway, but they had a policy that they don’t put recovery donors together in the same room, and it seemed really stupid to me. So I said well ok, so I went on strike and I walked into the room next to me, Rusty was in the next room and I, there was a chair in there and I said “I’m sitting in this chair till’ they move me”. And I told all the nurses, and there was a big crisis in the nursing floor so I sat there for like six to eight hours or something the day after my surgery, and uh so finally it was about like 10:00 at night and the doctor came in and said “OK, we’ve met administration and they’ve agreed to change the policy and we’re gonna leave you in here.” 

So I was like “Yay! All right! It worked!” (Laughs) So they moved me out of the dying guy’s room with all the crying people in there and I was able to be with Rusty and the rest of our family that came to visit us, all whom were very joyful that this operation had gone very well, so that was like the first day or two after surgery.
Well, Lewis was this radiology tech. And so, he came to my room, got me, and wheeled me in a wheelchair down to radiology to take an X-Ray. And what I remember about the experience, was that people like Lewis are so nice, and he was like a big line back football player type guy, and he’s just so nice and gentle, and he seemed to like, really care about me, you know. 

And that was the thing I remembered more than the environment, than anything. And I’m an architect, so I look at the environment and I think about all kinds of things, but it’s actually the people that take care of you in the hospital that actually makes the difference, not so much the environment. So I remember Lewis, the radiology tech. And um, and it struck me that it’s the people, and when you design these environments, if you can make it a better place for these people to work, they can be that way. They can do what they do, they can focus and, and I learned that kind of first hand.

I guess I regret a little bit that part of it, well I said it was an unselfish thing to do, but part of the selfishness about it has to do with my, the risking of my life, you know for my wife and my child, Sarah. Maybe that was a selfish thing to do, and I think that’s why Nancy was uncomfortable with it. It, it, she had a lot of anxiety about it, and rightfully so. So maybe the only regret is, I mean I don’t regret how she felt about it, maybe that was a little selfish. And for example, if I came to you now and said “Hey, I have a chance to donate a lung to one of your cousins, I might die, how do you feel about it?  I want you to agree with my decision for whatever it might be”.

It’s a tough one, huh?  Maybe there’s a little recklessness to that part of it, I don’t really regret it, it’s just the way I am, you have to take some risks sometimes. That’s really what living is, it’s the human condition, emotions and the experiences that you have, and how you act afterward. So, um that is you know, probably up there higher than crashing a motorcycle.  Now I do sound reckless huh? (laughs) Decisions are hard to make.

There’s not black and white, there’s not a clear cut, there’s no guidebook to help you, there’s no… you never really know. People have to be guided by their own feelings, I guess that’s what an instinct is. Everybody’s different about that. And it’s hard to understand other people’s makeup that guides them to make certain decisions. Like you’re always saying “I don’t understand why she did that or why he did that, I don’t understand!” You know, well I guess they do. You and I maybe don’t.

Well you know, because I design hospitals [architect] it helped me a lot. Just being through that, these experiences and having them first hand, it did teach me a lot, first hand. Some of those lessons that I could pass on to you that are really stuck with me were, the first one, for example, after Ashley’s first transplant that they didn’t take, and she had to be in the pediatric ICU, but she had a private room, it was a nice room, it was on the corner and had a view out to the park of St. Louis. It was really, very, very nice.

But um, (clears throat), she was a senior in high school and she had to be in this ICU because she was on this ventilator that breathed for her. She couldn’t breathe, you know.  And she could go outside for short walks, if they took a hand ventilator for her, to vent her. But um, the first thing that I learned was that intensive care units typically are for patients who are, what I would call “zoned-out” they’re like not conscious or they’re out of it or they’re in such intensive care that they don’t have any awareness of their surroundings and the environment and stuff and uh suddenly all that changed and here was my niece, living, in this ICU room for almost a year, it was like nine months.

And um, she was doing her homework; she was actually graduating from high school from that room. So she basically spent her senior year in high school in a pediatric ICU. And so, it changed my way of thinking of those rooms forever because it’s like not everybody that’s in those rooms is zoned out, and when you design them you need to think of the different uses of those spaces, including someone who’s going to be in there, maybe living like her, finishing high school.

The experiences that I’ve had in hospitals, they’ve reinforced [my desire to design hospitals] and they’re, I mean, they’re interesting places. You know such crucial in peoples’ lives happen in those kinds of places. People are born, you know, most people are born in hospitals, and so there’s this joyous birth process that takes place in the hospital. And then there’s people coming in for routine things, but as we very well know, awful things can happen even through routine procedures. And then there are people who are really sick, and who, who get better, there are people who don’t get better, and there are people who die in the hospital. So, all these happen within these four walls of this place, and to me that was a wonderful kind of environment to apply my talents and skills and energy and emotions towards.

I was doing something that was making a difference in peoples’ lives, in places, environments that were associated with these very significant milestones in peoples lives; birth, death, sickness, illness, getting well, not getting well, getting worse, getting better.  All of these things, not to mention that it’s a work place for thousands of people, and they do many very different jobs and trying to make those environments as less stressful as possible, trying to make those places as conducive as possible. I… I, discovered that fairly early in my career, that’s what I wanted to do, I didn’t want to design GAP stores, or prisons, or airports, I wanted to do that; I thought it was really important for people.

As you know, the story has a happy middle, but not a happy ending, as Ashley only lived three years beyond that and she did pass away due to some complications of her disease, and not necessarily because of the transplant.
If they [doctors] came in and told me “Would you give up part of your lung so she can live for three more years?” it would be a harder decision for sure.  I think in the end, I would think “Oh yeah, sure” you know, my life between the age of eighteen to twenty one was a great time in my life so if that’s all she has, then yeah it’d be worth it.

But it’s hard to say, it would make the decision difficult because going in to it, I certainly envisioned it as being successful.  But, you know, that poor kid, how many people do you know that graduated high school on a ventilator living in a pediatric ICU.  I can’t think of any others, I’m sure there are lots but you know, just because of the card she was dealt by genetics. That was her fate, and I was lucky. I had choices I could make that she never had.