Lee Wallace '86, a double lung transplant recipient, shares his story of struggle, hope and survival in this full-length interview with Eric Townsend of the Office of University Communications.
A popular musician in the North Carolina Piedmont Triad region and an avid supporter of the Humane Society, Wallace underwent a double lung transplant in January 2012 as idiopathic pulmonary fibrosis (IPF) attacked his body.
Tell me a little bit about your time at Elon and how it influenced your career.
I went to Elon from 1982 to 1986. I started out as an English major and figured I would go into teaching. While I was there, they started up the psychology department, and somehow I got into that and wound up with a psych degree, too. At the same time, I was in the music department, studying guitar and minoring in music. I also ran the radio station for a little while. I really enjoyed my years at Elon. They were busy and seemed productive.
Is that what sparked your interest in music?
Oh, no. I’ve been playing music since … gosh, I started taking violin lessons when I was seven or eight years old.
Switching gears to your health, can you tell me when you first realized something was wrong, and that you knew you would need to go to the doctor to find out what troubled you?
The symptoms started coming on about five or six years ago, but I didn’t really worry about them then. The symptoms at first were things like feeling more out of breath after my regular dog walks, and at the end of the workweek I felt a lot more exhausted than usual.
Over a few months, it turned into getting out of breath talking on the phone or eating, and really, my wife, Leslie, noticed things a lot more than I did. I just attributed it to getting older. I figured, “Oh, this is what it’s like to be 40.” But she noticed things a lot more acutely than I did and she got me to go to the doctor.
Like a lot of IPF patients, I was misdiagnosed at first. I spent about a year going to different specialists around town, not really getting anywhere. When my condition started to worsen at a quicker pace, I decided to really do something about it, and we ended up going to a well-respected lung doctor at Duke. It took me four months to get that appointment, and while there I got a lung biopsy. That’s when I was diagnosed with IPF, in 2008.
What was it like to hear that diagnosis? Had you even heard of it before?
The doctor at Duke, when he initially examined me, told me he thought it was a possibility. That was the first time Leslie and I had ever heard of it, so we read up on it and it looked pretty scary. We dreaded that’s what it might be. The biopsy told us that’s what it was. Yeah, that was a major event, finding that out.
What were the emotions involved?
At first, I could hardly believe it. I was still going to work, still kind of doing a lot of the things I usually do, albeit with a little more effort. I thought, “Well, I’m not really that bad. I don’t feel I have something this bad.” There’s no real treatment for it, just a way to slow down the progression of the illness. I took those medications for a long time. It’s really a rough road. They don’t make you feel good. It was a tough slog.
Do other people you encounter understand the emotions you experience when you’re dealing with a terminal condition? Do they understand the process that goes into seeking a lung transplant?
It’s hard to say. My friends and family do ask a lot of questions about it, and I’ve answered those questions a lot. But it’s hard to articulate, you know, what a lot of that feels like. It takes a lot of determination. You have to put a lot of faith in it that it’s going to work. You have to stand aside of your emotions and not be too freaked out about it to get on with it.
Did you find that you were the one trying to comfort others?
I don’t know. People have told me that they’re amazed Leslie and I have had such a good attitude about this whole thing. You know, mostly, even during the period of time when we thought it was going to be terminal and I had maybe a year or two left, even during that time we tried to do things we like to do. We still went to social events. We still got together with friends. We still went to concerts when he could. When we could, we took little vacations together. We didn’t put our lives on hold because I was sick. That probably helped us out a lot, and that probably did encourage people.
What factors did you consider when deciding whether to seek a lung transplant?
To be honest with you, I really, really did not want to do it for a very long time. Lung transplants are really hard, and they don’t have a great success rate. I was turned down by two of the best clinics in the country who told me I was too risky to get a lung transplant, that my condition was too bad, and that I was not likely to survive. I really did not have a positive outlook on it for a very long time.
Eventually, I was on 10 liters of oxygen and it was so hard to get through day by day. I can remember being at Duke, and I had a little bout of pneumonia. My doctor was next to me talking to Leslie about how to call Hospice, how to fill out the forms and what to expect when Hospice comes to the house. At the time I was 46, 47 years old and I thought, “This is a real thing that is happening. I have to get ready for this. I’m either going to die, or maybe I’ll give this thing one more shot.”
Leslie wanted me to make an appeal to Pittsburgh to see if they would take me. We went up there for an examination, stayed for a week and they took me into the program, putting me on their list.
Talk a bit about the wait for the transplant. How did you learn a set of lungs had been found for you?
We had to be within range of the clinic to be on the list, so we moved to Pittsburgh. We had to raise a whole lot of money to be able to do that. Leslie and a few other people worked very hard to raise that money, and I’m as grateful and indebted to them as I am to the surgeons who stuck these lungs in me and made them work. It was a colossal amount of effort.
We managed to do it by the end of October (2011). We lived in what they called the family house. It’s sort of like two or three steps up from a dormitory that the hospital runs up there. We stayed there with families of other people waiting on transplants. While we were in Pittsburgh and I was still able to get around, we enjoyed the city. They have a wonderful symphony and we did go out and do thing.
The hard part about waiting was that my physical condition deteriorated really rapidly and I started to worry that maybe I’d be too bad off by the time a donor showed up, that I’d be in such bad shape that the surgery and the recovery would be too hard. But these people are pretty smart, and they’ve done hundreds of these procedures. They told me initially, a guy your age and size, you’re going to wait about three months.
It was three months to the week. We got a false alarm at first at about 2 a.m. It was nine degrees outside. We went to the emergency room, which was a couple of blocks away. We went through all the preparations for the surgery. At about 11 a.m., one of the surgical team members came out and told me, “You know I’ve been looking at the donor lungs, and I don’t think these are the ones you want.” He said, “Let’s hold out for the next one.”
About a week later, we got another call at about 3 a.m. This time, Leslie and I didn’t hurry at all. We thought, “OK, another call, we’ll go check it out.” These lungs turned out to be perfect. In fact, the surgeon told me later that of all the transplants he’d done, he thought this is in the top-5 of lungs that fit and looked right after he got done.
How’d they make you feel?
I have to say, since I’ve gotten home and started to recuperate, I’ve felt really good most of the time. I could feel immediately, as soon as I went off supplemental oxygen and breathed on my own, I could feel how different it was. That was a really emotional experience.
Do you think about the lungs and the circumstances that may have led to their donation? Someone must have died for you to have the gift of life.
Yeah, and I’m told it was a very young person. I don’t know anything other than that about the donor. The nursing staff on the transplant floor all speculated openly that they thought my lungs came from a teenager. I don’t exactly know how they came to that conclusion, but they were pretty sure about it.
I think about it. I think our bodies are just like clothes we wear while we’re here in this plane of existence, that our spirits are another entity that exist beyond the world. These body parts and things, they are what they are, and everybody should be a donor. There shouldn’t be any kind of shame or weird association with being a donor. Everybody should think, “Well, I should do this and take care of my body to make sure my organs are good enough to use for somebody else if I’m not around to use them.”
How has your life changed since the transplant, and what are your future plans?
My perspective certainly has changed. I don’t worry or gripe or get mad about a lot of the things I used to. My focus right now is day-by-day. My improvements are incremental, and they take a lot of effort. I’m still focused on what I have to do to get better and get back into fighting shape.
What kind of lifestyle changes have you had to make?
I take a handful of medicine every day, twice a day, and it has to be timed correctly. That doesn’t sound like such a big deal, but it is. If you live a life where you go out and do things, visit people and go places, you have to be acutely aware that the medicine is available at a certain time, and that I take it and the prescriptions are filled. There are breathing exercises and physical exercises that I have to do. You have to be dedicated to that if you intend to get better. Cleanliness is a big issue too. Dust, mold and food cleanliness, things like that, we have to pay a lot of attention to.
We’re learning those things, and they’re getting easier. I remember the first time I sorted out my dose of medicine and took it. It took us about two hours to go through the sheet, put together the evening dose and to take it. Now, I can do it while I’m making my dinner or something. I can have things cooking on the stove, turn around and put my pills together and take them, and turn around and finish cooking dinner. Those things get easier with repetition.
Why is it important for people to know about the experience you and other lung transplant recipients face when going through recovery?
I’ll tell you this, Eric. We had the opportunity while we were in Pittsburgh to meet a lot of people who were either waiting for transplants, had gotten transplants or were trying to get transplants. The thing that really shocked me was that they really had no idea what they were getting into. Some people who had gotten transplants were still mystified as to what was happening to them.
I don’t know that the general public needs to know everything about solid organ transplantation, but if you know someone or have a family member heading into this, you should know how hard it really is. It is a test of willpower to get through it and get through it right.
There were lots of situations where Leslie and I would talk with someone’s spouse or children about their husband, wife or parent, and we’d tell them, “You know, you really need to get that person out of bed and get them walking as soon as possible.” They’d respond, “They feel so bad, I can’t do that to them. They’re miserable, and I can’t make them get up.” I’d say, “You have to, they’re going to get pneumonia. They’re going to get worse if you don’t encourage them to do this.” The response: “Well, I just can’t do that. I don’t understand why the doctors put them in this situation.”
They were so incredibly prepared for what was going on. Leslie and I did a lot of research before we got into the process. We asked a lot of questions and were lucky we had our doctor at Duke and people over there who were helpful for us to get us ready. For people stepping into this and people around them, it’s extremely important to know what it’s about.
What thoughts or advice do you have for anyone who wants to know more about lung transplants?
There have been a couple of national organizations that have helped us with fundraising and information. One is helpHOPElive.org. They managed all of our fundraising money, kept everything legal and made sure it was spent appropriately. That’s important – I don’t want anybody to ever feel like it was misspent. These were friends and working people. They weren’t rich people or corporate endowments or anything. These were people who worked and raised families who gave us money to do this.
One thing I’d really like to say is that my wife Leslie and our good friends have made me able to do this. I was a really sick man for a very long time, and it was hard to imagine that I could even do something like this. They really made it possible for me to do it, in terms of the actual physical/getting around and doing it, and the emotional support I needed to do it. They deserve a lot of credit for this.
Sitting here today on this beautiful afternoon, hanging out in my back yard with my dog, and reading a book and talking to you feels pretty awesome.