Barry S. Interview

Without saying a word, Barry walked up and threw open his jacket to reveal his T-shirt. After a brief, "This is weird" moment, I realized that his shirt read "Transplant Games". He had seen the logo on our trailer and wanted to talk about donating his kidney to his younger brother, Dave. Barry relates his highly emotional story of brotherly love with astounding sangfroid, nonchalance, and humility.



Greg: First off, tell me who you are and about the unique way we met.
Barry: I’m Barry Smith. My wife and I had taken my Mom and Dad up camping in Jasper. Phoebe and I and my Mom were going out for a walk around the campsite. My Mom had noticed that you have a trailer that had some… I don’t remember what it says now, but …
Greg: Transplant Central.
Barry: …yeah, so as we walked past it, we said, “Oh did you see what that says there?” When she told me what it said, I thought, that’s odd. So, I went back to look and OK. So, I approached you and that’s how we met.
Greg: So, a number of years ago your brother was having some difficulties with his kidney?
Barry: Right.
Greg: Tell me about that. How did it start? How did you find out about it?
Barry: Well, it started… he was… as I recall, he was having headaches I think later due to the high blood pressure. He started getting kind of puffy looking and, um, I guess the persistent headache was one thing. But then he found out that his… after he went to the doctor, he found out that his kidneys were failing and didn’t have a whole lot of time left before they were completely gone. I think that was in… that must have been around… close to summertime. Yes, that was six years ago… gettin’ old, eh? Ha.
Greg: ’96, or something like that?
Barry: ’97. Yes, in ’96 he would have been sick, right, so I guess in the summertime. He was put on peritoneal dialysis. So there was a tube in his stomach … and he filled his body cavity up with a saline solution or something and did a flush every day, or something. We were looking at various options and, um, somebody had mentioned that you could transplant. And I thought what a great idea! He’s just like me. He likes cars and motorcycles and, I thought, I must be the perfect match, right? So, we got into the Hope Program through the Capital Health Center
Greg: What does cars and motorcycles have to do with that? Replacing parts, or something?
Barry: It just seemed to me that if you like cars and motorcycles, and I like cars and motorcycles, he’s probably just like me. So, we’re probably a match in some way. It just seemed like the genetics must be there to carry on a similar…
Greg: Your garages do look alike.
Barry: Right! So, um, myself and another sister and brother went in and started doing the blood testing to see if we were a match or not. And he felt all along that I was going to be the one. As it turns out, I was a 100% match. So, we went in to interview the doctor. They do some kind of a psychological assessment just by talking with you. I guess I seemed like I wouldn’t have a problem with it. So, they said sure.
Greg: What did they want to know? Do you remember what they asked you?
Barry: Um, nope. Let’s see if I can think of a key question. Probably something like, how do you feel about giving it? Does that bother you? You know, like I had done my homework by that time to find out what a donor’s role is, and what the consequences are. Basically there’s none. So, being a donor is a no-brainer. You miss, you know, a pound of flesh, and the other kidney picks up the slack. It’s typically, if a kidney gets sick, both kidneys go. So, whether I have one or two, it wouldn’t matter if I eventually do get some kind of a kidney disease. It would likely affect both. So, having one or two doesn’t matter. So, once that was, I guess, agreed upon, then the date was set and we aimed for that date. The date came and went.
Greg: So, how did you feel about it?
Barry: It felt good, I guess. It felt good that I was able to do that.
Greg: Do you and your brother ever talk about it, or it’s just kind of understood?
Barry: Not much. It’s pretty much understood.
Greg: I notice some people that I’ve talked to… one of the people on our board of advisors is an actor named Aron Eisenberg. If you ever watch Star Trek, the Next Generation or Deep Space Nine. The Ferengies?
Barry: Yup.
Greg: He’s one of the Ferengies.
Barry: OK. I’d never recognize him! Ha.
Greg: Well, you wouldn’t recognize him, but he’s short, ha. He was the nephew. He had a kidney transplant eighteen years ago. He’s one of those people who, you know… it’s just part of his life. He never talks about it. And then there’s other people that… well, Dave… it’s a big, huge part of his life. He talks about it a lot.
Barry: Right. Right. That really perked him up good, ha. He was feeling so bad for quite some time. And finally having a kidney that… and basically as soon as it was put in, it started working, right? So, the next day he felt great and he felt better and better and better.
Greg: Was he athletic before?
Barry: Pretty much, but not what you’d call a dedicated athlete. So, through school and whatnot he would do hockey and different sports and golf, but not with a real passion. It was a little bit of time, it would be a year or two I think after he got his kidney that there was a program that some of the doctors were doing that determined how much strength a recipient could get back after hitting that low spot and then they want to try it out. So, he volunteered for that program. And so he would go and do a certain amount of testing and exercise regimes and they would do blood sampling and whatnot to see how well he was coming along. And he just carried that on and then found out about the Canadian Transplant Games and the World Games and got involved in that.
Greg: Just kind of became his mission.
Barry: Yeah.
Greg: So, you’d say he’s more… much more of an athlete now.
Barry: Much more. Yeah. He always was kind of a natural athlete. I remember he would… he went in one bicycle race through the River Valley, up and down the hills. And when he finished the race, he lit up a cigarette which is something I would do as well. And in the summertime he would go to visit our sisters that were living down in an area about two miles south of where he lives now, and put three or four beers in his coat pocket and he’d run there on the spur of the moment.
Greg: And he’d run fast so they didn’t get cold.
Barry: Yes, or warm, whichever…
Greg: Or warm, yes.
Greg: How did it… Do you know how it affected his relationship with Lori (Dave's wife) at all? How they got along?
Barry: Nope. Phoebe (my wife) might.
Greg: Did they talk a lot?
Barry: Off and on. Not a whole lot, but… Phoebe’s more of a relationship person. For me, it’s just kind of over my head and it’s gone. I don’t… I tend not to do a lot of deep thinking on relationships, although I should. I’m trying to learn that task.
Greg: That’s why you’re the computer guy, right?
Barry: Right.
Greg: What about your parents? How did they take it since they have two sons who were both involved?
Barry: Good. Like, I’m not sure what kind of an answer you’re looking for. They were … like everybody was pleased that I was able to do it. But, um…
Greg: Well, I mean for example, did you spend more time together as a family? Did…
Barry: Nope. Nope. I don’t think so, ha ha. But for me, it’s like, that’s why in my mind it was a pretty minor thing for me to do, because it didn’t change me at all. Except that… you know, I’m proud that I was able to do it. But other than that, it’s not… we haven’t become closer or farther apart.
Greg: With your brother or your parents or anybody?
Barry: Right. I think we visit still about the same amount as when I used to live in Fort McMurray, which is a five-hour drive from here. So, we didn’t make that drive too often… once a month, or sometimes longer than that.
Greg: So, from that distance, how would you say your brother is different then?
Barry: Oh, he’s perked up. I think his outlook on life is a whole lot better now. He has a much… I think a much clearer goal as to how he wants to treat himself and life. So, he quit smoking a long time ago, unlike me. But he’ll still drink… you know, drink a little bit. Sometimes, if we go and actually do meet out at the lake or something, we’ll sit and we’ll drink half the night if we want. But he’s more conscious of keeping his body exercised and in tune that way.
Greg: And you don’t feel any different other than having a little scar now?
Barry: Right.
Greg: OK. That’s what some people are. When I was in the hospital recuperating from my transplant, somebody came in towards the end of my stay who donated a kidney for his wife. She was down the hall in another room. And he was up visiting her and taking care of her a day or so after he had his taken out. So, it was interesting to watch.
Barry: Yup.
Greg: When you were in the hospital, did you have rooms near each other? How long were you in the hospital?
Barry: Five or six days, I think. No, our rooms were kind of kitty-corner in the hospital. Were you able to go through the University Hospital?
Greg: Well Dave, he took me through on a Saturday, so we didn’t really walk the wards much, and the offices were all closed.
Barry: Did you go into the front door of the University Hospital? It kind of goes right up to the ceiling so you can see the different floors.
Greg: Right, the atrium.
Barry: Well, I was up in one corner and he was on the opposite side on the back side. So, that was kind of good because we could get out of bed and I could wander down the hall… and it would encourage us to get up as soon as we could and get moving, which was good until you sneezed. That smarts!
Greg: So, were you the one to get up and go more?
Barry: Maybe, to begin with, but then once he perked up, he was up and at ‘em as well.
Greg: Yeah.
Barry: Then at the end of that week, I don’t remember if I stayed in town another week? But then I was able to get onto our corporate jet and fly back to Fort McMurray, so he drove me out to the airport here. I don’t know if he was supposed to or not, but we both felt great because the first little while you don’t have as much pain, I find, as when once you get to that four or five week healing part, all the nerves come back to life and you feel it when you move. Other than sneezing, I didn’t really hurt.
Greg: So, your scar is in the front under the …
Barry: Yeah, it goes from here to… they just clip off one end of a rib and then they do it that way.
Greg: Yeah, I was… I still have kind of a sore in here at times. The doctors… you know, when they opened me up for the liver transplant, they had to take clamps inside the ribs to really open me up so, something got kind of…
Barry: … kinked.
Greg: Yeah. You know, today I still… three years later, I still… it hurts a little bit at times.
Barry: OK. Yeah, because they told me it would take probably the full six weeks to recover. And I found that it actually did take that long, and I could still feel it beyond the six weeks but not enough to hinder my movement much. Once I got back to Fort McMurray, I was back working from home. Being a computer guy, I can work from anywhere. The company said, if you need to take time off to do something, then go ahead and do it. They were fully supportive. So, I stayed home for, I guess, the five weeks following coming back from the hospital and just worked an hour a day the first little while, then a couple of hours… however long you can actually sit in a chair without having this pushing on the scar. I’d lay down and let my body stretch out, and then it would be fine.
Greg: How did you tell your boss that you wanted to donate? I mean what did they say?
Barry: Well, the boss I had at the time was one of those exceptional people that everybody wishes they could work for. So, I just told him what we were going to do and he said, “Fine, take whatever you need”. Let us know. Keep us informed, and we’ll see you when we see you. And that was that.
Greg: So, you were gone like six weeks.
Barry: Yup.
Greg: That’s wonderful.
Barry: Yes.
Greg: What about… your wife mentioned something about insurance in Canada. How does that work here?
Barry: I don’t know because we never pay anything, ha. So, it just works.
Greg: So, you just go to the doctor and somehow the paperwork is taken care of? Fill out a couple forms and that’s it?
Barry: Yup. So, I guess some stuff isn’t covered. Like all of your basic health care to keep you healthy is covered. And then you can get into varying degrees of, well, what’s really covered… or what’s…what is it to keep you healthy vs. cosmetic surgery or semi-cosmetic. So, like for dental stuff, the company health plans cover you for fillings and stuff, but only cover you 50% for a crown or maybe only your children for braces. It depends what you want. But with the Alberta health care, because it’s a life or death kind of thing, I guess, that’s covered.
Greg: Is it the same thing for Dave?
Barry: Yes. Now he has to… with the drugs, he still has to pay a certain amount for drugs, I believe. But it would be a minimum value. I know at the health plan at my company, our drugs are covered, I think, up to 90% of the value. And a dispensing fee… another way you grab money for the pharmacy… is capped at $5. So, if I go to the pharmacy, I spend… you know, get $100 worth of drugs, it’s going to cost me $10 for the drugs, plus $5 for the dispensing fee. But for the hospital, it’s nothing. This person is sick. He needs to get fixed. You do that, and it’s done. So, it works out good.
Greg: Yeah. That’s pretty nice. So, how did your wife, Phoebe, feel when you told her what you wanted to do?
Barry: First of all, very supportive all the way through. I think it made her very nervous knowing that there’s always a risk when someone goes in and is put under, for whatever reasons, for any kind of surgery or whatnot. Of course, a lot of anxiety on her part wondering, well, what is actually going to happen? It’s not that is he actually going to make it through, that she could kind of breathe a sigh of relief and say, you know, everything is fine for good. I can relax a little bit now.
Greg: Yeah.
Barry: Pretty hard on her, I think. Lots of worrying.
Greg: Did she come and visit you at the hospital…
Barry: Oh yeah.
Greg: …and come with Lori?
Barry: Yup. Lots of visitors. Some you don’t remember because you’re drugged up on morphine or something on the first day. It’s like fog. The fog rolls in.
Greg: Well, thank you for taking some time to talk with me.
Barry: My pleasure. If you think of other questions as time goes by, feel free to call me and I’ll answer them as best I can.
Greg: All right. That sounds good. It does sound like the kind of thing that, you know, it’s part of your life that you just do and don’t think about much.
Barry: Yup. Right.
Greg: Which is an interesting difference between you and your brother.
Barry: Yes!
Greg: You’re so alike in so many ways.
Barry: Right, but very different in other ways.
Greg: Were you always that way?
Barry: Yes, pretty much. There are three brothers in the family and you’d never know we came from the same family. So, my older brother is a schoolteacher, or a principal now out at one of the schools out south of Beaver Beach. I’m the computer guy, and David’s more the mechanic guy and now the exercise guy.
Greg: How were you different growing up, you and Dave?
Barry: We were into different sports. Dave has always been more outgoing, actually very outgoing. You probably found out, very talkative. I’m just learning how to do that now after fifty years, ha. But similar just with cars and motorcycles and that kind of mechanical stuff. We both enjoy that.
Greg: Does having that experience with him, that change you at all? Did it make you a little bit more willing to talk, or explore that?
Barry: No, I don’t think so, ha.
Greg: You’re not going to talk and you probably never will, right?
Barry: Right. Always a difficult thing for me to do. Unless we talk about cars and then I could…
Greg: You’d talk for days, right?
Barry: Yes.
Greg: Well, I won’t put you through this any longer.