Dave S. Interview

Dave is the director of the Alberta, Canada, chapter of the Canadian Transplant Association. While we were on Tour in the Canadian Rockies, Dave's brother, Barry, spotted our logo and introduced himself. He told us that he'd donated his kidney to his younger brother, Dave, and that they both live in Edmonton, Alberta. Edmonton became our next destination, with numerous interviews and friendships to follow. We also interviewed Dave's wife, Lori, to get her point of view.

Greg: Tell me what your life was like before your transplant and what happened?
Dave: Throughout my life I’ve always been fairly active doing things, running around and uh racing motorcycles and playing all kinds of sports and it wasn’t until about a year after I got married and uh
Greg: Which was what year?
Dave: 1994, I believe. Yeah it was ‘94 and we found out in the Fall, about a month after Nicholas was born, that I had kidney problems. I had no symptoms before. I was busy working on my mom and dad’s log cabin, and all of a sudden I started getting headaches and wasn’t really feeling quite right. But the headaches came along so I went to the doctor, who realized it was high blood pressure. And the next thing I know they said they’ll take me to the blood pressure specialist at the U of A hospital. So they did that. They checked everything out on me, and they came and told me that “You’re in perfect health except you’ve got a problem with your kidneys”. So off to the nephrologist I went and they told me that they were shocked, there was only 10% function out of both kidneys. So of course that came as a shock to me and I had a lot of disbelief. I kind of thought “Well, how could that be?”, so as I was talking to the doctors and other people after, I was getting second opinions just to see what was going to go on with the kidneys. I tried everything, exercise. I tried changing my diet, all kinds of things, to see if I could kick-start the kidneys to heal themselves again, but they didn’t.
Greg: Did you drink a lot of water and things like that too to flush them out?
Dave: Yeah, I tried lemon water as a diuretic to keep the flow going and all that. The doctor then was quite negative at the time so I found another nephrologist and tried him, and he tried other things.
Greg: Negative in what way?
Dave: Attitude I guess. The bedside manner was the biggest problem.
Greg: Was he negative in terms of having a transplant or in terms of his personality?
Dave: No he was saying I needed a transplant. And he was saying that it was too bad about your troubles and all of that, but he wasn’t that easy to deal with. So I wanted a second opinion, I went to another nephrologist, and he told me yeah, your creatinin is high, the facts are there, but let’s try some things. He was willing to try some things, yet the other doctor perhaps maybe had seen more of it before and knew the end result. So at least the other doctor, at least the present one I was going to at the time, was giving me more hope. So I tried the exercising, running, or cycling 10 or 20 miles a day on a stationary. And I managed to get about, let’s see, about another year and a half out of the kidneys themselves. And the creatinin kept crawling up, because it had originally started at 500 and the range is 50 to 150. And it worked its way up to 1000, to 1600, and at that point many people are hospitalized even at 500. And at 1600 I was still functioning OK, everything seemed not too bad, controlling blood pressure with medication. Then I decided I wanted to take the kids on a holiday down the Oregon coast because when I was little I went there and I wanted to make sure that I got them there at least once. And not knowing my future I thought this would be the thing to do. So we packed up the motor home, we drove down there with the 1600 creatinin, traveled the Oregon coast, and ended up getting a little more ill as I went. But the worst thing was that I had stopped at Moe’s Clam Chowder in Newport, or Depot Bay I think it was, and had clam chowder and a crabmeat sandwich. And that there put my urea up and I never recovered. I couldn’t start feeling good again after that, it was really hard. Because the body wasn’t cleaning out and that sets up the high uric acid and all that. And so we worked our way all the way back into Canada, and by the time I got home and they did blood work on me, my creatinin was at 2300, which is way over the top. Way over. And they ran me on dialysis for three days in a row and they brought it down to about 1000. And then told me my options for dialysis, I could do hemo or peritoneal. . So after the site healed I got off the hemodialysis and went to peritoneal. And I did that for six months and got used to it. It wasn’t bad. For me I made the best of it and I worked every day and it didn’t seem like that big a hassle after six months. Yeah it was there, you had the tube coming out of your stomach, but it was good.
And then the phone call came saying that my brother was a good match and they started to work us up on when they could do the transplant. And they kept homing in on all the blood types and grouping everything together so that this thing is going to be a go.
Greg: How did your brother come to be involved to begin with?
Dave: Everybody in the family just said they would donate. They didn’t hesitate. Mom and dad and all the brothers and sisters said they’d be right there. “You can have mine” is what they said. And Barry said, “You know what? Mine will be the one because it’ll be the perfect match”, he said.
Greg: How did he know?
Dave: Because we do so much alike. Everything we do, whether it’s the like and the love of motorcycling, the cars, mannerisms. And there’s a 10 year age difference, he’s 10 years older. And he just figured he’d be the one. And out of the two brothers and two sisters he was the one that was the closest. So then the doctors were doing the tests with him. And it wasn’t until, which was a fluke because it was Family Day, is when we got a phone call. Everybody was here at the house, we were eating, and of course you’re filing your stomach the day they want to call you, and here I am eating, filling up on potatoes and all the stuff with high potassium, knowing that maybe I can find another way to maybe shortcut that potassium level in me, because that was quite a concern to most doctors was the potassium level. So ended up getting that phone call right while I was in the middle of a meal. They took me over to the hospital that night, and then they said “Yeah, he’s gotta have the uh, you’re going into surgery that morning.”
Greg: What made them decide on that day?
Dave: I guess when the doctor was back from golfing. No it was when they had an opening. Maybe they had somebody scheduled for something but it didn’t work out and we we’re next on the list. You never really know when you’re going in.
Greg: I would have thought that since both you and the donor knew each other that they would schedule it on the calendar ahead of time.
Dave: The don’t pick a date. You might be lucky in a month but needless-to-say they had to try and clean me out and get rid of everything that was in my stomach to basically get rid of the potassium and any food that has been in your body for a while. So it was interesting because the doctor who was on call the night I went in was my original doctor, the original nephrologist. And I saw him and I went “Oh no, he’s the one following up on all of this”, so I didn’t realize his whole part of it all at the stage we were in there but I remember him coming and going through all the rooms. And the next day I went in, they did the transplant, and I came out of that quite happy. I was up on morphine and in the room and my brother was a lot more lethargic when he came out. And it was a different type of surgery between the two of us because they put the kidney in the front of me and took it out the back of him. But it was interesting while I was laying on the bed and the nurses were all buzzing around because I’d just come out of the operating room and they’re getting all the numbers and things and in comes the original doctor. And he looks around and he picks up the chart, and he starts barking orders at the nurse. “How come I don’t see and output on this chart. Home come there’s no urine marked on here?” And my comment was, “If you pull out the catheter I could reach it from here”. Ha ha, I could hit it from here, I could get urine on the chart, ha. All the nurses and they knew me and they just hit the floor laughing, and he looked at me and walked away. Ha. After a couple jokes like that he and I passed back, like I passed to him, it ended up that he had to be my follow-up doctor through the whole thing. So now we’re great friends. We came to a common understanding that I’m human, he does his thing, I do mine and we joke every time we meet each other. So I think it’s something I had to do, you know to vent, when I needed to. And or what is needed, uh find a better way around it. And maybe that did change. I may have made a change in him too. But from now on we get along great.
Greg: You bring up an interesting point, which is attitude. Talk about attitude and going into a transplant, whether you’ve got a good attitude or a bad attitude, and whether it does or doesn’t help.
Dave: I think a positive attitude, since I’ve always had one, it wasn’t hard for me to go in thinking positive about it. And to me, at the time I went in, the shows that were big were Chicago Hope and ER. So everybody followed those shows and you’re watching them all the time at home. So when I went in for the transplant it was just like being part of the show, if you watched enough of it at the time. And you see everybody running around doing their thing and you know in the show somebody usually lives at the end, so ha ha.
Greg: Did you have any doubt that you might not come out of this?
Dave: Uh no, not after, not when things started to progress, I didn’t think much of it. Like I went in, had the transplant, and I was out in five days. And it was simple. I didn’t have too much of a concern, I always thought that it was going to work out. And which probably helped it work out too.
Greg: Because it was so simple in a way, what made you want to spread the word about transplants. It almost sounded like you had your oil changed the way you describe it.
Dave: Ha, and that’s almost how I describe it to some of the people who are worried about it too. It can be that simple, and the other people that have the transplants that end up meeting right after mine, we’re all in there, we were waiting before, we all had our transplants, now we’re all out there waiting for them to take blood every day as they’re doing follow-up work on this same group that was done about the same week. So you see these people all the time, “Oh, how long has yours been?”, “Oh four days”, three days here, and two days. It seems like a common thing you just pop in and get a transplant and head out feeling healthy. Unfortunately some people I had, that had transplants, of course didn’t have as much success. Whether it be the match was not correct or the body was just not willing to accept it at the time. And there’s people that I know have had second transplants since then as well. And I give them a lot of credit because they have to go back onto dialysis, and they have to think about what they went through before and what they’re going to go through again, and that’s got to weigh heavy on their mind. And it’s not just the kidneys, that’s my area anyway, but it’s the liver recipients. I have friends, Neil of course, who is going through that. And other people, when they know if their lungs aren’t going to go for a long time longer so you just carry on and keep thinking, they keep hoping. But the thing is that these people have a great attitude still and they don’t hesitate to do something nice for somebody else, they don’t think the world owes them a living or anything. They’re happy. They’re very happy, and even though they know that every day they got from the first transplant has brought them to this day. And the next one they’re hoping will be the better one. And this one lady I know in Ontario, she’s on her third kidney transplant and it was third-time-lucky because the first two didn’t work and she hung in there and the third one she is doing great.
Greg: I’ve noticed that talking to a number of people, liver transplants and kidney mostly, but some others, it seems like kidney transplant patients have more a “It’s an oil change” kind of view of it. Maybe it’s because there’s an option, you can always have dialysis at least to get you through for a while if not for a long time. And kidneys have become kind of so common and, like you said, three, four, five days later you’re talking to other people and it’s like a coffee klatch…
Dave: Hah, yeah…
Greg: …whereas I know from my own experience with liver transplant patients, a lot of them have a tendency to think about it more and talk about it more. And I’m wondering if people such as liver transplants or heart transplants they don’t have an option, or it’s not quite a four day process like you’re talking about.
Dave: That’s quite possible, because I don’t have a lot of background in those other transplants as for the time you spend in the hospital, but I know there’s a lot more to it than the kidney. And the kidney is of hooking it up, and like you say it’s a quick engine swap and away you go. And it’s not that easy for everybody but ones I meet are the ones that have had this success. I do know a lot that haven’t, but it’s more the normal to think that the kidneys are the easiest and the most common to transplant because you can find a donor, if it’s related especially. If somebody’s willing to give you, you can go with one kidney quite comfortably.
Greg: What major medications are you on?
Dave: I’m just on Prograf, and Immuran, and a blood pressure.
Greg: Did any of those affect you in terms of moods?
Dave: I think the mood swings I had was pre-transplant more than post. Because with the kidneys, the toxic levels of all the chemicals, Your body feels different. And especially as the levels get worse, as you get farther near end-stage failure, you’ve really got some weird symptoms.
Greg: What kind of symptoms?
Dave: Well, cramping in the legs, usually from dehydration, or the calves will knot up. The bottom of my feet used to feel like they were crawling, like things were coming and going in the bottom of my feet. It was really, whether it’s an itch from having too much potassium, no it wasn’t the potassium that would itch, it was the phosphorus. Phosphorus causes the itch if you get too much. You just feel you gotta scratch all the time. You’d probably do that anyway if you ate a lot of peanuts and everything else, things high in phosphorus, and wouldn’t realize it even if you were healthy. You’d probably just feel like your skin was dry and itchy, but it’s probably that. But now you’re more conscious of it because it’s post-transplant.
Greg: Since your transplant have you been more forgetful?
Dave: That’s quite possible, ha. I can’t remember the last time I was forgetful, ha ha. Everybody says that renal failure is a link to forgetfulness. Drug, anti-rejection drugs could lead to it. I don’t think there’s anything written that says you’re going to forget things but I don’t think so.
Greg: How did you and your wife handle your transplant? Did you talk much or was she pretty quiet?
Dave: She’s fairly quiet. She did pretty much as much as she could around the house, whether it’s keeping it clean, keeping the kids occupied and busy and all of that, and explaining to them what I was going through. And they could watch me do dialysis every day. They would sit and see me hook up and ask me questions like, “Oh, why are you doing that?”. “Well, the kidney’s not working and you uncle is going to give me one”, and all that so they got to see that. And to them now I don’t think the fear would be there as much as far as what I went through, because I was fairly positive. I went through it and, you know, I made light of a lot of situations, whether I was wearing a mask at the time or what-have-you.
Greg: What has made you so active in trying to spread the word about transplantation?
Dave: It’s just something that came. I remember originally I wanted to do something else. Not work-wise originally but just to get out and I felt like I needed to do something. I’ve always been competitive and I’ve always wanted to just continue on and get in the best shape I could. And then I found out about the Transplant Games, and the Canadian Transplant Association is what I got linked into. They were the ones who could lead me to where I could go farther. I could exercise, have a goal, and try to meet it and get active. And while doing that and preparing for local games, I became more involved in, the whole point of the Games was to show how well you can do after transplant. How much you’ve got in you to give after and to show the world that, you know you’re not just you had a transplant and you don’t have to stay in your house to protect it. You can go out and enjoy life to the fullest. So while being involved in the group I just took on more responsibilities as I went along, and before I know it became the director of Alberta for the Transplant Association. And it’s been good. I’ve got a lot of great people with me who are helping out spread the word, and it’s the people I meet I think that keeps me going. And I really enjoy talking to post-transplant and pre-transplants just because we have so much in common and we’ve been through the same thing. It is a big family.
Greg: How did you end up being the director for Alberta?
Dave: Well the group that we had been sitting of in the board, the lady, Kathy, was going to retire from it. She wanted to step down, she’d been doing it for four years herself. She just thought she needed a bit of a break. And they asked who would be best suited for this, and they all pointed their finger at me and said, “Him”.
Greg: So you got volunteered?
Dave: Yeah, ha, they said, “He would be the one right there”. And of course I wasn’t out looking for any extra responsibility to do this, but as it came to and I started becoming accustomed to holding meetings and getting things accomplished in small scales and sometimes big scales, the people that are other recipients and other people in the medical staff that have been behind me, tend to really want to help out. So that has been good.
Greg: What would be your advice to somebody who is waiting for a kidney transplant?
Dave: To keep active. Because when that time comes and you have your transplant, the whole world opens up again and it’s just like you’ve been given a fresh kick out the door and away you go. Go take on life and take on all the challenges you always wanted to.
Greg: Anything else that you can think of?
Dave: Well for myself, ha, the next challenge I’m going to do is go and climb a mountain, because I haven’t before and it’s the highest active volcano in South America. So another heart recipient patient, who has climbed one already, and I are going to go and uh….
Greg: Which mountain is it?
Dave:: It’s Mount Cotopaxi in Ecuador, 19,328 feet I believe.
Greg: Will you take some pictures and tell us the story later on?
Dave: Oh for sure, we’ll send pictures and send the story in.
Greg: I got you on tape saying that.
Dave: That’s right!
Greg: We’re shaking on it right now…
Dave: There we go now…
Greg: …right there.
(Sound of hands shaking)
Dave: Yup, we can hear that.
Greg: Thanks.
Dave: Great.