Interview with Rienk de Vries

Rienk de Vries was trained as a civil engineer and works as a consultant in the water industry. He’s an avid soccer player and coach. He also received a new heart in 2012. He talks about the experience. Find out more about the research Rienk is involved in at cdtrp.ca.

Watch: https://youtu.be/we71zpdJTZU

Unedited transcript

Jim Allan: This is Connections, and today my connection is Rienk de Vries. Welcome, Rienk.

Rienk de Vries: Thank you.

Jim Allan: Let's get this first part out of the way. For years you've had your own company, Beacon 2020.

Rienk de Vries: Yep.

Jim Allan: What do you do?

Rienk de Vries: We focus really on transformation of the water industry. So I've been in the water industry for probably 25-26 years and maybe even a little bit longer than that. I may not want to admit all the years, but and really from a technology background to start with. So after getting my civil engineering degree at the University of Minnesota and getting an MBA, I joined what was at the time called Arthur Anderson and now called Accenture. So I joined them in the consulting division and really the focus was on IT. A couple of years later I went back to my civil engineering roots and really started focusing on water. So to the application of technologies in the water industry, mainly in the Midwest and in the U.S. to start with, but then also out west, Seattle, Portland, all the way to Boston.

Jim Allan: Okay, now that's not how I know you, however. We live in the same neighborhood, which it's a fun neighborhood because there's all these interesting people to talk to. When I first met you, you're one of my kids' soccer coach, and then I learned that you played. I remember remembering that you played in an adult league, right? You're very active. You coached and you played, but then I was surprised to find out that you were a goalie. Nothing against goalies, but I did find that kind of odd. Why were you playing goaltender instead of like midfielder or you know, a streaking, sprinting forward?

Rienk de Vries: I started playing goalie when I was probably eight or nine. I played in Holland, then I played in Belgium just as a kid and then moved to the U.S. and played there, junior high school and back to Belgium and I played soccer there at the International School of Brussels and I also played for a local Belgian team and then I went back to university in the time, soccer wasn't as big in the state, so it was still called a club. It didn't have sort of varsity status yet.

Jim Allan: The answer I thought you were going to give is because of your, there was a physical condition as well, right?

Rienk de Vries: That sort of came later where I always, I like to play in goal. I also play a little bit out where I played usually on the right defense and but there was a certain point when I couldn't play defense anymore and that was when I turned 37. We had just moved to Canada and I thought, wow, I don't know what's wrong with me. I need to work out more. I just, I didn't have the energy anymore. We had just had our first child and even carrying him became difficult and so I said, well, you know what? I'm just not feeling right. I'm going to get this checked out and I got to the hospital and immediately they threw me onto a gurney, I'll say, onto a bed and they did all kinds of tests. They thought I'd had a massive heart attack. My heart rate had gone into the 20s and low 30s. As it turns out after sort of maybe five, six days of tests and checks and I ended up going to Hamilton Hospital back to Oakville Trafalgar Hospital. They found out I had a conduction problem and they didn't really know what the root cause was at the time but the solution was they stuck in a pacemaker. Once they stuck in that pacemaker, you could program that pacemaker to still allow you to do lots of physical activity. At the time I had to step back a little bit from more of the running because what happens is the technology in the pacemakers is limited. So at the time they had in there the relationship I guess between exercise and the way the pacemaker is speeding up your heart rate wasn't exact, which seemed to function just fine for a while.

Jim Allan: How long is a while? Maybe for a few years?

Rienk de Vries: Yeah, I'd say I had the pacemaker in for about 17 years but I'd say after probably 13, 14 years it became more of a problem. My condition continued to get worse and I continued to have a more and more difficult time.

Jim Allan: Yes. Now I remember you being fit as a fiddle because you're a soccer coach and very athletic looking but I became aware at a certain point your health was starting to deteriorate and you knew what was going on by that point. Now at what point did you know that you potentially needed you were a candidate for an actual new heart?

Rienk de Vries: That didn't happen until a little bit later because at first we had to figure out what the root cause was and so the genetic testing really hadn't been that well developed when I first ended up because my first pacemaker went in in 1996 and so at the time the genetic testing was not to the point yet where they could pinpoint what the problems were so later on I ended up getting some genetic testing done when it just didn't seem to be getting better. It continued to get worse and I thought well this really needs to be checked out and so I had some tests done and they found out I had a genetic condition called the Desmonopathy. Effectively it's a mutation of the Desmond gene which turns out it was a hereditary condition from my ancestors. They had when we did some research on it we found out that they had traced this back to the early 1800s.

Jim Allan: In your family?

Rienk de Vries: In my family back in I'm originally from the Netherlands.

Jim Allan: But you didn't know anything about it?

Rienk de Vries: Didn't know anything about it and so but yeah that had been around since the early 1800s and it was a something that's called autosominal dominant and it was fully penetrant and it was so it was 50% autosominal dominant meaning 50% of your ancestors will get that that same of your of your offspring will have that same mutation. So ultimately we ended up having to get the kids tested as well because the likelihood is what half half the kids would would have the same mutation and it also meant that we we knew effectively what the prognosis was eventually that that I would need a heart transplant. There was there was nothing was going to fix that genetic engineering and some of the other technologies had not been developed enough yet at the time. So from the point from from the moment that we found out that that I had this genetic mutation it was really a matter of of surviving and staying as healthy as possible along the way until I was eligible to get on the transplant list and eventually eligible to to get a to get a new heart. Because that's a obviously a big deal because there's people on the list ahead of you.

Jim Allan: What was that like just from an emotional level.? You find out you need to go on a list and the list is how long?

Rienk de Vries: First of all is you don't get on the list.

Jim Allan: Right.

Rienk de Vries: And so that if they apply or the the here's the the dilemma is you have to be healthy enough to get on the list as you're healthy enough so you would be able to survive a transplant.

Jim Allan: So young enough.  They might not do that with an 85 year old.

Rienk de Vries: No at the same time you have to be sick enough and urgent enough to make the transplant list. So it's it's a conundrum that.

Jim Allan: Right.

Rienk de Vries: It's it seems almost impossible to solve. How can you be sick enough yet healthy enough at the same time. You needed it but you were too healthy. That's part of the problem and because a lot of the criteria for getting onto a transplant list are related to urgency. And so of course urgency it's it's sort of like brinksmanship you know how close are you to the edge how close are you to dying how how urgent is it that you get a transplant. And there are other criteria of course you know there there are standards that they set like if you you know you need to be living a reasonably healthy life so you can't be smoking like a like a chimney drinking like a fish. These are all things that you have to be you have to be careful. Of course I didn't do that anyway. I let a what I'd say a fairly I say boring and very very proper life always looked at nutrition always looked at exercise. So at the same time there's nothing you can do about genetic deterioration of your of your your heart. And so so that that was tough. And so once I got onto the onto the transplant waiting list effectively onto the list. Then it was a matter of staying healthy enough until a heart became available.

Jim Allan: And, do they give you a sense of how long?

Rienk de Vries: It could they just give you it could be a year it could be 10 years. It could be 10 years. I would have probably no longer been here. But but yeah they you don't know. And and it that the hardest part of the journey was actually the waiting. There is nothing you can do. And when you're when you're an active individual and you like to solve problems. I went to engineering school. You know problems are there to be solved. This is what we do. And here's a here's an intractable and unsolvable problem. And so the frustrate that it was it was a very very frustrating time sitting there waiting for a phone call. And I remember there were some some parts of that journey at one year. So I'd been waiting for 12 months and had heard nothing. The phone did not ring. And and I know that people wait for for years for kidneys. People wait sometimes for years.

Jim Allan: You're confident you're on the list though?

Rienk de Vries: I was on the list. You have to stay on the list as well. So every once in a while things would go wrong. You end up in the hospital if you catch an infection to take you off the list and you have to get back on the list. It's a it's not a simple sort of process. So you try very hard to stay on the list. And that can be for physical reasons. It could be for could be for mental reasons. And so you have to stay strong to stay on the list. And so yeah that that that part of the journey was was hard. The not being in control not being able to solve the problem and staying alive.

Jim Allan: I probably met you in about 2007.

Rienk de Vries: Yep.

Jim Allan: Where would you have been on on the on the journey at that point?

Rienk de Vries: I would have been deteriorating. My heart would have been deteriorating. My condition would have been reducing. Basically my heart would have already the right side of my heart would have been turning more into into effectively a bag. What happens to when you other things start happening when you are paced as much as I was. So I had pacemaker in already by by that time. So it was about 10 years 11 years something like that. And yeah about that. And what happens is when you're paced on it's typically start it's on one side of your heart. And so the right side of my heart was was the problem effectively. So that's getting paced. But then the left side of your heart tends to respond with that second part of the beat a little bit later than it would. So slowly the left side of your heart also gets affected. And that causes all kinds of other things to happen. And people might misdiagnose that and see think the problem is on the left side of the heart. All these things started happening. So then you have to look for other solutions for that. So it's the the journey itself is not without sort of complications. But in 2007 that would have started happening. The the impact was starting to go to the left side of my heart as well.

Jim Allan: When did you actually have the transplant?

Rienk de Vries: That was in 2012. December, 2012.

Jim Allan: So, I knew during that time I think there was a period leading up to that then your health really deteriorated. I think probably you aged about 30 years probably, right?

Rienk de Vries: That was exactly when you say you age 30 years that's exactly what happens. Basically you know between and I again like a side engineer I map all these things out. I had a line basically you you you run out of energy. You have to shrink your world and you have to do that. I'd say there's a there's a concept in IT called graceful degradation. And so when a system crashes it looks like it crashes. But there's still a process going on behind the scenes that makes sure all your data doesn't get lost and all that in theory. So I I thought as a as a person you also want to do that by design. So I I started having less and less clients out of town less and less contacts with people. My I could walk so you do this sort of mentally and you do this physically. So I could hardly at one point Jim I could hardly get up a curb. I would have to lift my leg physically with my hands to get up a curb. Going up and down a staircase would take me I don't know 20 minutes. And you and you're thinking clearly during this whole time you know exactly what's happening. Yes. It's not fun. No no.

Jim Allan: And you have a young family and and a business that you're on. So yeah what kinds of like let's say 2007 to 12 what kind of does you kind of alluded to that what kind of decisions did you have to make?

Rienk de Vries: So, I pulled back from my network.

Jim Allan: That's also your income.

Rienk de Vries: That's my bread and butter. Absolutely. And and so I was very very lucky. I had some clients that were amazing during that time. So I would of course you end up in the hospital. You try and stay out of the hospital as much as possible. We end up in the hospital. At one point I was in the hospital for three weeks straight. I didn't get outside. And when you're used to being active and being outside and really enjoy people as you're shrinking your life into a much smaller space these things get get harder and harder. But I had one client they actually would because my mind was still working fine. My mind is the same age that it that it always seemed to be. My body and the rest of me seemed to be deteriorating at a rapid rapid clip. They would come to the hospital. I would have my laptop just across on one of those tables on at the hospital bed. They would bring sushi. The food's not always great in the hospitals. They would bring some food and we would do work there. So again I was very very lucky. And and so I was able to continue to have an income through that whole process. Not everyone is so lucky.

Jim Allan: Sure. Now leading up to 2012.

Rienk de Vries: Yep.

Jim Allan: Was there a time or you were aware that you were a low number on the list or how does that work?

Rienk de Vries: Well there's many stories here of course. And what happened is there's a lot going on in on the kidney side that doesn't always get shared with the heart side. And so there's even these these silos in the medical system where where I feel there could be a lot more collaboration between the various organ transplant areas. The donor community or whatever.

Jim Allan: How would you describe it. The transplant.

Rienk de Vries: Yeah the transplant community within hospitals. And so what we found out is that the the the state that I was actually the likelihood of of of me finding a compatible donor had shrunk to the to the point where there were only going to be eight or nine percent of the available hearts were going to be a possible match for me.

Jim Allan: So what's that size and blood tape and age?

Rienk de Vries: All of that sort of compatibility of of the heart. Okay. And so given that that suddenly moves you from the general sort of transplant population on the list to a much more urgent part of that list. So I moved right up to a to a very high level. And I don't know what it was. I think whether it's the top two or three and what happens then. Because your health was failing enough. And because it was so unlikely I was going to find a compatible donor heart. That also meant that I went on the national list. Vicki it's it's again back to the the people in your family. The people that are your friends. Vicki had talked to someone who had a friend who happened to be on the kidney side who then suggested that that this compatibility test be done. They found out oops you know you should have been on the national list probably eight months ago. And so again it's through these connections. I know you you mentioned the word connections right at the beginning. And it is through all these connections. It's about people and and finding the right information. And I so I probably should have been on that list quite a bit before the time that I was. Doesn't matter. In the end you know I feel I got the right heart. It's a it's incredible. It's been been amazing ever since I I had that heart.

Jim Allan: But you were wearing a pager or something at a certain point?

Rienk de Vries: I just I had my cell phone. They did have pagers. They were kind of going out of style because everyone had moved on. These pagers were sort of like an old technology.

Jim Allan: Right.

Rienk de Vries: And so in the end I had I always had my my cell phone on with me. And you just got a phone call. I got a phone call. And not only that it's it's like we had a phone call just on our our home phone. And Vicki was sitting upstairs. I think she was doing math homework with Taba. So she wasn't answering the phone because he had to stay focused. And so then and I happened to be down in the basement. I worked my way downstairs. I hadn't been there for probably a month. And and so I was down in the basement. And and the phone in my sweatpants rang. And it was just I didn't know what number it was. I answered and and a lady just said we think we may have a heart for you. Oh thank you so much. You know I it's it's kind of you don't know what to say. I mean it's a I said and so then I realized of course they probably tried to call. Yeah it was sort of a who is this. So and and I said say Vicki maybe you should have answered that call. It looks like we need to go to the hospital. Of course then all the the panic sets in and it's and so.

Jim Allan: You've been waiting years for this phone call.

Rienk de Vries: Yeah so you've been and at the time it was is 20 months I waited.

Jim Allan: Since you knew you were on a list?

Rienk de Vries: Yep since since I got on that list.

Jim Allan: Okay, more than 20 months overall?

Rienk de Vries: Oh yeah well since yeah, years because just to get on the list took a long long time. Okay and and so then then of course it was uh I said that's okay. I mean you're not you're not supposed to drive yourself to the hospital but I said I want to make sure we get there. Vicki kind of organized things. I drove to the hospital and it was a very strange experience there because.

Jim Allan: What hospital are we talking about?

Rienk de Vries: Toronto General. Okay. So it's University Health Network.

Jim Allan: Right.

Rienk de Vries: And uh because there isn't really a simple procedure so they they sort of say yep come into the hospitals check into admissions and and then they'll show you. But it's not not all the time that they get people. Hi I'm here for a transplant you know. And uh so meanwhile you're trying to park. It's not easy in a in a downtown hospital. There's there's other logistics to deal with and uh and then you sort of go through this process and you're you're a bit in the twilight zone. It's uh. And your adrenaline is uh off the charts. It is and because you're in in a yeah you're in a different world and you know. That's why they don't want you to drive probably is like. Well no my my head was absolutely fine at the time. When you get there again the the thing you were and plus I'm to me these are just actual things. I don't I don't worry too much. I would watch my own transplant. It wouldn't bother me. I I've always because I'm fascinated by the process. It's it's you don't know. You haven't gone through this before so it's all kind of new. Um but using you know and and and that that the heart could arrive. They could because they have to look at it. The surgeons they still need to look at it. They have to make sure it's okay. That it's compatible. That it's going to work. And the the surgeon himself it was the him at this time Dr. Yao. He was you know you want the best technician known known to man of course. You want someone that's done this a few times and I remember in the first the very first meeting he said well this will be my first one. He's just joking but you know you you worry about these things a little bit right and but this this guy was was incredible. He was very very good. In fact you can see him on YouTube. I think he had like a YouTube video on heart transplants. Well heart trans I mean when I was a kid hearts heart transplants were front page news in the newspaper right.

Jim Allan: So this is no small feat.

Rienk de Vries: Nope. Obviously.

Jim Allan: So let's go back to those days though. You're allowed to talk about the circumstances of where the heart came from?

Rienk de Vries: Yep well the way that process is is different for every province and turns out my heart came from Nova Scotia and you hear that by you know I I ask questions. I talk to assistants of surgeons. I wanted to find out as much as I could. You could also hear nurses talking. I knew the heart had flown in from somewhere. Then I heard the word you know Halifax. I also heard oh it's a it's a young person. So all those things you sort of glean from conversations and and of course the internet's pretty amazing so you can look for things that have happened.

Jim Allan: And this is all while you're waiting for your surgery.

Rienk de Vries: Some of that's while waiting and some of it's afterwards. You know I I made sure to thank the the surgeon afterwards. I called called his office and and they're just very very happy that you know you got a good heart and it's going well and all that. So even in those conversations you glean a little bit here and there and then you can again you can look then things up on the internet to see what what has happened. And so but the the way the system actually works is in Ontario you can send a letter. It goes to Trillium, Gift of Life. They redact out anything that they that you're not supposed to share. Names, locations, all kinds of things, references. They redact that out. They send that letter to their equivalent organization in Nova Scotia. That organization then looks at that sends it to the family and then the family responds in the same way. So it's it's very much choreographed and and and again redacted along the way. So what happens you get a letter from from the family that has a lot of blanks in it. They were clearly also trying to share names and and locations but they were all redacted out. So you you get sort of a a halting letter and you you have to figure out because contacting a donor family it was their loss right. Yeah. And so you have to be very very careful. You don't want to bring up trauma again. You don't want to cause undue stress on on on on those families. So you you have to have a pretty good indication as to whether or not they want contact.

Jim Allan: Right.

Rienk de Vries: And so it seemed in the in the first letter that they might not. Right. So then I thought okay because I hadn't really been ready to write the letter for almost a year after the surgery. It was just something in my head that I wasn't ready to face it and the potential of that contact or to write a letter. And I felt a little stilted writing it. You know it's an emotional thing. And so how do you convey that. You want to thank the family of course. I mean it's a it's an amazing gift. And so so that kind of that exchange there were two two exchanges of letters until but the the second exchange the second time that we got a letter from the donor family is now six years hence. Six almost seven years hence. That one had like a little smiley face on there that didn't get redacted out. I thought okay.

Jim Allan: These are handwritten letters?

Rienk de Vries: No these are these are typed they're like email or something. Yeah it was yeah a little little smiley face emoji. And that hadn't been redacted. So I thought okay. So maybe maybe they're friendly you know. And I thought okay so I thought how am I going to contact them without really contacting them. So because I knew who they were.

Jim Allan: Right. And through your own sleuthing.

Rienk de Vries: Through my own sleuthing. Yeah it was fairly straightforward. Because it was in the news.

Jim Allan: Was it in the news?

Rienk de Vries: It was in the news. Yeah. There was an accident. There was there was an accident and and someone was airlifted to the hospital. And so and it turns out that was a hospital right across the street from where my son had his place at Dalhousie University. So I knew exactly where it all sort of happened.

Jim Allan: Right.

Rienk de Vries: And then so I I could see on Google Earth. I could see the cemetery where he was buried. And it was related to a church. So I thought I'll send I'll send an email to the pastor. Right. And so I said here's all my information. Can you please convey it to the family. If they would like contact then please feel free to do so. And then so I didn't hear anything for a couple of weeks but then suddenly I was sitting at Union Station. I was heading back on the GO train to come back to Oakville. And the phone rings. And it was the the father of the the young man whose heart I had. So Stephen. And yeah sorry. Yeah. It gets.

Jim Allan: It gets real at a certain point.

Rienk de Vries: Yeah.

Jim Allan: This how long? This wasn't that long ago.

Rienk de Vries: Six years later. So to. Yeah. Yeah. And in the end it was seven years. And so just before Covid. So we ended up sort of communicating back and forth. Just Facebook and and got to know the family a little bit. And they really wanted us to come out. And so so we ended up Vicki and I decided OK let's let's go do that. And it turns out that Stephen whose whose heart I have also saved three other people. And so there's a there's a liver guy a kidney guy and a pancreas guy. And and they're all connected to the family. They the family knows them all. So when we went we we didn't know what to expect because you hear all the stories it can go you know you can have strange connections and and it can be a lot of stress. The family might see you as their son and and treat you that way. And and so we were aware of some of the potential downfalls. But none of that really happened. And and so we went we got on a plane. We we flew to Halifax. We rented a car drove down. We stopped at Peggy's Cove for a for a nice sort of clam chowder.

Jim Allan: Right.

Rienk de Vries: Lunch and then took a deep breath and and drove down to a place called Quinan. And so not too far from from Yarmouth. And for them enough time perhaps had passed that they had processed a lot of that. That and and the fact that they again they were already very closely connected especially to the the the gentleman that got Stephen's liver. And so they already had those relationships in place. And they would have liked to have connected much sooner. And so that would have been would have been nice. But they they were unbelievably open people open hearted open armed. And and so when we we drove up the driveway knocked on the door and sorry.

Jim Allan: No I understand. I understand.

Rienk de Vries: Now it was it was it was very emotional and and so we just hugged them and and and they said you know and and and we got to know them a little bit and they said you know is it OK. We've we've invited some people over. Is is that OK. And we said sure why not. And what we didn't know is how many family members there were living close in that community. And they all of course knew about it. So I thought that we were coming. We met probably 35 40 people aunts uncles family friends family grandmas grandpas. And and it was it was incredible experience just wonderful wonderful and gave them some peace.

Jim Allan: No doubt.

Rienk de Vries: Yeah. And they they listened to my heart. A number of them were nurses and they had stethoscopes and it was it was superb.

Jim Allan: Let’s go back to 2012.  Did you need special medication?  I always hear about things being rejected.

Rienk de Vries: Yeah. So that's another obstacle another hurdle to to jump.

Jim Allan: No doubt. Right.

Rienk de Vries: So once you get a transplant that's the first thing you focus on is make sure that you don't reject your heart. So I always thought oh you have to accept it and in in in many ways. And so you know I've read all the the sort of materials on that. You have to accept it in your mind. You have to accept it in your body and then you have to make sure that you also take anti-rejection drugs. So I remember waking up and and it was a very strange thing. I hadn't really heard my own heartbeat since I had pacemaker put in because something changes in the way that that you you hear your own heart or for me anyway. And so when I woke up and I was probably still under the influence of whatever medications they they'd given me. But I was lying with my my ear on the pillow and and soon I realized I can hear my own heartbeat. And and so then it got me thinking you know how sometimes some music will sound like that. It was like it was like music and then I thought OK so they tell you how you're supposed to accept the heart. I said OK first I have to get to know this heart. You know it's it's new to my body and and I thought OK why don't I try some different types of music to see how the heart reacts because hearts are about rhythm about sort of connecting. And so I tried all these different types of of music and I thought that that way I'll know if the heart came from someone that likes certain kinds of music. Or I know this makes no how old was he.

Jim Allan: How old was he?

Rienk de Vries: Turns out he was around 30.

Jim Allan: OK

Rienk de Vries: young lad and I through that I thought a he likes all kinds of music. I tried classical Norwegian heavy metal everything the whole gambit. The heart seemed fine with all of it. You know and I thought OK this probably it was probably a guy I had. I know if you ever watched Archie Bunker. Of course. But you know and and there was an episode when when he was talking to Meathead and realized that you know Meathead said no no no you could you could get the heart of a of a black person.

Jim Allan: Right.

Rienk de Vries: And and I remember that episode and and and his you know Archie Bunker his jaw dropped open just that sort of possibility. But it got me thinking I thought it would be really cool if you got say a black person or like say a black female's heart. Would that would that mean anything or do anything that change anything right. Would would you be more open. Would you and of course that's all a kind of fanciful thinking. But the the idea of having someone else's heart inside you. I think it does. It is worth thinking about it a lot. And I you know and of course in the end he was a wonderful young lad and and he was a a seaman. So he was first officer on supply ships for Marsk shipping company and used to bring supplies to the offshore oil platforms off of the coast of Newfoundland. And so he'd been in in in boating and sailing just like his dad and his grandpa. And so I love that sort of boating connection too. And so I felt I felt right away that I was I was connected to the heart and that that it was sort of meant to be.

Jim Allan: And, you're confident from day one that it was going to work?

Rienk de Vries: I mean even if it's somewhat irrational it's doesn't matter. He just believed it. Yeah and and it doesn't matter. I'm not particularly religious but but these things you know it you have to accept it because otherwise what and you have to go through that process whatever that means for you. And it's different for everybody. And and I felt in the end that that even going to visit them that that was that was meant to be. All this. And I know his mom his mom's the same age as I am. And and so she felt that that that Stephen had had chosen his recipients. That is sort of it was meant to be. And and yeah whatever that means however that works. You know I'm you know I'm very very lucky to have gotten that heart. So even though I was frustrated I should have been on that national list eight months or two blah blah blah. Or you're reborn in some respects. It's unbelievable. Speaking of religion. Yeah. And so you can't discount that. I think you can't discount sort of the the the the mental aspects of it the the and and and the meaning behind behind all of that. But yeah I have a brand new life.

Jim Allan: But in those first few months, did you just bounce back right away?

Rienk de Vries: Pretty much. Yeah.

Jim Allan: There's medicine involved right?

Rienk de Vries: There is. And so you have anti rejection drugs. You have biopsies. So when you're after you have your transplant they need to make sure it's it's working that it's continuing to work that you're not building up scar tissue inside the heart. So the way they do that they actually send so you go for a biopsy they send a little wire through your your vein goes into the heart. It basically takes little pieces out of the inside of your heart and then test them to make sure that there's that that the that there's no rejection forming. The first time we went we got there early. So we got the Toronto general and there was a gentleman standing there and he was very upright looked very energetic and he was ready to go. And then then it was us it was Vicky and I and and so I had a little chat with the guy and he was full of energy had been two years since his transplant. He was going to hit country number 50 he was traveling all around the world. He'd already done 49 different countries in total and he was so wow I thought that's the model after two years. I'm going to do 60 countries you know sort of like oh I could see that model and that that was a model that I thought I could I could look for and and and aspire to and and then then then it was myself.

Jim Allan: Was this relief that you just survive the operation perhaps or were you actually feeling physically that feeling very very good?

Rienk de Vries: I felt good immediately. Jim what what yeah and the reason is because you you've been walking around without proper amounts of oxygen going through your bloodstream for so many years that you have zero energy. There's there's no energy transfer and so as soon as that heart goes in it's pumping it's pumping oxygen all through your veins and I felt I could fly. I wanted to stand to eat. I didn't want to sit down anymore because suddenly it's it's it's as if someone just like like you said a shot of adrenaline and it's a permanent shot of adrenaline. You're you become so used to being running at at at 30 40 percent capacity or less and suddenly you're at 80 or 90 percent capacity. It's it's like the weights gone off your shoulder. You feel like you can fly. It is an incredible experience.

Jim Allan: Now I somewhere I don't know when I ran into you but it was somewhere there was suddenly you were just at a school function. Yeah and you were just there in the hallway. “There's Rienk”. We're not close enough friends that I would be visiting you in the hospital and sadly but I guess I could have but I remember there's a Rienk and I give you a big hug. You probably there's probably a lot of people giving you a lot of hugs so you probably wouldn't remember but it's it on some level it's kind of a miracle.

Rienk de Vries: I mean it's a miracle of science and and and absolutely you're there walking and and and you're here to tell the story kind of thing but it was there was there I mean you said you're feeling great right was there were you better in six months better in a year better in two years or you keep getting better but the first that that first change is it is it's it's transformative change you your your your and also you you then realize because for 17 years you've been on a on a downward slope and you could you could map it and you have little bumps along the way but everything is is down right so now you get a transplant and suddenly you're on this upward slope so it's just mentally and and and physically you're you're now there's this this great hope where where you're sort of heading towards despair you can calculate you know oh I'm going to be dead in three months so I'm going to be dead in four months you could you could map that out and now it's wow you know I feel like I could go back to the Olympics

Jim Allan: Now you know, and that's nine years ago…

Rienk de Vries: yeah that was in uh so December 2012 so almost almost nine years it'll be nine years in december the sad part is it's potentially genetic and your kids potentially have the same condition right which they have to consider well we have to look back first of all doing that sort of you know once once we found out it was a genetic problem that explained why my dad died very young he was he was uh 30 okay and or 29 I think he wasn't quite 30 yet my aunt died at about uh 55 I think she was and she was one of the first pacemaker recipients in the Netherlands she was I think uh number seven or eight and in fact she had one that was powered by plutonium so she wasn't allowed to go close to airports she was a nuclear powered she had a nuclear powered pacemaker at the time but it explained and why my grandma died young why and back through my family history why they all died young and why I would have also died young I'm the first one in in in that line that has been able to you know through this transplant to survive uh beyond the age of of 52 53 54 55 and and uh so and so that's the one end of the of the spectrum the other end of the spectrum is we also now know what it is so you know and four so a couple of my kids also have this this uh this genetic condition and so they will yeah they got tested they wanted to get tested all the kids wanted to get tested it's uh you have to think about that very carefully because as soon as you do there in in there are different laws in different countries in terms of what that means in terms of ever getting insurance let's say or right or you may not even want to know because you know I live great life I didn't know I didn't know until much later and I wouldn't trade my life for the world even if I would have died at the at the age of uh of 50 something that that's okay I wouldn't have traded in my life but once you know you might do things differently so you have to make that decision sort of consciously the older two kids it was one thing they were old enough the younger one we we made sure that she thought through it a couple of times and and then made it made a decision also to get tested so all three of them were tested and and two of the three have the the mutation so the good news is if they have children they can test for that now in vitro so then it still makes it very very difficult because let's say my mother would have known yeah and these you get into these very very difficult ethical situations and and uh and you know what would she have done uh so these are so it it gets into a whole host of of of questions and and decisions that do make it make it difficult might there be anything in the future where the the solution isn't a transplant or absolutely I think there's an awful lot going on in in in research genetic engineering certainly is one thing where maybe they can adjust those things uh and and so that before uh it exhibits itself that they can make adjustments so it doesn't uh it doesn't come out in the same way and and and it doesn't actually activate so uh I'm hoping that that more and more research will be done in that area.

Jim Allan: Now you're you're you're involved in in research post-operative research so tell me about the Canadian donation and transplantation and research program that's what that's what you're involved with is that you and other patients. You are being kind of more activist…

Rienk de Vries: Yes. Very much more involved in basically setting the direction for research and and and also prioritizing funding one of the frustrations I had in in this entire journey and it is not a simple journey is that patients don't really have much to say the the the the health care system is very very reactive so once you have a problem and it's urgent boom you go in they help you they fix that problem bang you're out and and that makes for a very bumpy and a bumpy ride a very painful ride and I don't think that's that's really helpful for either the medical people professionals that are helping or or the patients and and then you have a group of academics as well that that that are focusing on on on their areas a couple of things academia the have been very very frustrating one is how little collaboration there is we had to do all that research in terms of my condition is desmond this particular desmonopathy because a lot of it was happening in in the place in northern holland where my family is from and where my ancestors are from because that's where the big problem is so the research is going on in university chrowning and now the researchers trying to get their research out trying to get funding for that research and they may not want to collaborate with too many people around the rest of the world so there's very little information sharing that goes on naturally in the past certainly that's been the case what the the cdtrp is is trying to do is change that so it's very much a collaborative approach between researchers and it's it's done also with the collaboration of patients so when there's funding going on patients have a say in terms of the priority of the funding priority for funding things that are practical for patients and so that are actually important to patients that that journey so helping patients through that journey both on the on the on the mental health side and also on the physical side nutrition exercise to make sure that that the aim ultimately is is more of a long-term quality of life so the focus becomes on that not on here's a problem i fixed it see you later i'm done and and or having research done in isolation which is then published somewhere where people may or may not see it so what i really like about the program is it it brings those parties together to to focus things much more on on patients and you know the assumption that the patients just someone that comes in you fix them and you send them off and they don't have much to contribute i think in the past the doctor knows best I think is no longer has a place in society i think we're we're on that now and i think we can do a lot better and i i think cdtrp is is doing that the system for all its flaws in in Canada is not bad and and you're super lucky you've gotten someone's heart not only that you've got a couple of children who are are also going to go through this journey so so you know you feel at a certain point like you also have a responsibility to give something back and and to provide input to make that journey easier for you know future generations and for other people that have to go through this and and also to physicians and and medical professionals be more effective in in the types of things that they do or allocate budgets and and and finances in in the places where they actually can make a real difference

Jim Allan: Thank you, Rienk, for sharing your story.

Rienk de Vries: I really appreciate the chance to to talk about this, Jim.

Jim Allan: Thank you.