I’m Aware That I’m Rare: Jennifer Gendron (432)

the phaware® interview

On the 14th anniversary of her son’s life-saving lung transplant, Canadian pulmonary hypertension care partner, Jennifer Gendron discusses how the PH landscape has changed over the past 20 years and life post-surgery.

My name is Jennifer Gendron and I’m from a small town in New Brunswick, Canada. My oldest son was diagnosed with pulmonary hypertension back in 2003 when he was five years old. As a lot of people’s stories go, there were some subtle hints sort of leading up to it. Nothing seemed too out of the ordinary. We thought he had asthma. Just sort of out of the blue things progressed really quickly and we got this diagnosis sort of out of nowhere. It felt like, that he had severe pulmonary hypertension and that there was really not a lot that they could do.

20 years ago, things were certainly looked a little bit different in the pulmonary hypertension world than they do now, even less medications and treatments available. He started on oral therapies and quickly ended up on Flolan. He sort of never really did great. He stabilized for a little bit and then he would get worse. We were thrust pretty quickly, I would say, as PH goes into looking at transplant options. He ended up at the age of 11 having a double lung transplant back in 2009, so 14 years ago.

Back in that day. So one of the first things that I immediately tried to do was find some other people, connect, learn a little bit more about the disease. There was really not much happening here in Canada. I live on the East Coast and I found a very active support group on the West Coast, BCPHS. It was led at the time by Liz McCall. It was the most active group here in Canada and literally on the opposite end of the country. There had been the Pulmonary Hypertension Society of Canada at one point, which had become pretty much inactive by the time that Braden was diagnosed. I found PHA in the US and got myself on a plane and got to a conference down there, met some really incredible people and started to make some connections with people that were from Canada that were also looking for support, that had started little pockets of support groups throughout the country. I got myself connected with that group, and it wasn’t too many years after that that we were able to come together and form what is now PHA Canada, that just celebrated 15 years unbelievably as an association.

To me that was one of the biggest, most important things was to connect with other people and learn as much as we could about the disease, find the support that we could not only for our son but for the rest of our family. I had two other young boys that were three at the time, twin boys, that when their brother was diagnosed and certainly it’s a disease that impacts the entire family and one that is very complicated to manage. Just talking with other people and connecting with other families that were dealing with this similar journey was certainly, I feel, very important.

It’s interesting because over the years I’d often have people say to me… So he was diagnosed in ’03, so he lived with the disease for six years before we ended up in on the transplant list. People would say, “Well, he have a lung transplant, wouldn’t that fix it?” It sounds like a fix, but you’re certainly trading off one set of problems for another and a lot of unknowns. As much as it sounded like this miracle cure, it’s not something we wanted to rush into. We also don’t live anywhere near a transplant center. Being from rural New Brunswick, the closest transplant center for us is Toronto, Ontario. So 18 hours from where we live, and we had to physically move to that area before Braden could be listed.

We also weren’t sure if that was really something that he would be up for. He was 11 years old. He was very frail. Would he survive a transplant? Was a transplant the right decision? Was he up for the long process of the recovery and all of those things, because he was still a child, but he was getting to that age where how much do we involve him in the decision? How much of this decision is ours? At one point, he wasn’t responding well to treatment. We had gone through the transplant process, the workup leading up to it, tons of testing, and then they got him on Flolan and he stabilized a little bit. So that kind of got parked. It was almost a relief like, okay, we don’t have to deal with this right now. We don’t have to think about this. Because it was a really tough decision and a decision that affected us all.

Unfortunately, he stabilized only briefly on the Flolan and so we got faced with the whole transplant scenario again very quickly. We went up and we had all of the testing done again. It wasn’t just him that was testing, we all had to meet with the psychological team to make sure we were all capable of going through the process or that they deemed us to be capable of going through the process. We had to, as I say, physically commit to moving our family. That was a big decision, because at the time, again, I had two other young children at this point they were nine years old. We, I guess, decided really early on as a family that if we were going to do this and we were going to go down this path, that we were all going to do it together. So we weren’t going to separate our family, because we had no idea how long we would have to be in Toronto waiting for transplant.

My husband was an RCMP officer at the time, he took a leave of absence from his job. I owned my own business. I hired someone to run it. We were still sort of on the fence if it was the right decision to put him through the surgery. I remember we were sitting in Toronto in a restaurant, my mother-in-law had come up to meet us. We had been just going through several days of tests. This was a boy who his two younger brothers played sports, hockey, which he was not able to do. But also, always, “Oh, hockey is so stupid, I’d never want to play a game like that.” He was a video gamer, that was his passion. We were sitting in the restaurant having lunch and my phone rang and it was the hospital in Toronto. And they said, “We just wanted to let you know that your son, we’ve gotten all of his tests back and he is a candidate, we would be willing to move forward and list him for transplant.” He said, “Who’s on the phone?” I told him and I told him what they said and he said, “Yes.” I said, “Really?” He goes, “This is great. I’m finally going to be able to play hockey.” And that was that.

I had to leave the table and excuse myself and go to the washroom and lock myself in a stall and cry my eyes out for a few minutes and get it together. But I realized then, okay, this is what we’re doing. This is what he wants and we’re going for it. We came home and found somebody that would look after our house and packed up whatever belongings we thought we would need and got in a U-haul and drove to Toronto with our two dogs, our three kids and our worldly goods and waited. We really had no idea the wait list at that time… Well, the wait list is always… You just don’t know how long you’re going to be there. We didn’t know if it was going to be months or a year. We arrived in Toronto at the first part of August and got a call on September 23rd, he got the call for his transplant.

Right up until they took him through the doors of that OR I kept thinking, we should just go. We should just go. We know what we have here. We know what we’re dealing with. I know what his quality of life is now. We should just turn on and leave. What if he doesn’t make it through this surgery? It was horrible. But he was so determined at that point that this was going to be and that he was going to have this new life, we were like there’s no turning back now. But yeah, I think of all the highs and lows in this whole journey, that was one of the absolute toughest moments is just not turning around and running out the doors with him.

He’s been very fortunate in terms of transplant and how well he has responded. There have been very few setbacks over the years. Early on, he did experience some chronic rejection right at the very beginning, which was really scary, because we weren’t sure where that was going to lead us. I had seen and heard a lot of stories where people just chronically rejected and had to go back for a second transplant. That was fairly early on, probably six months out, he ended up with some chronic rejection and having to have high doses of steroids. You have a preteen on IV steroids, who’s in this absolute emotional rollercoaster.

But after that, and when they got him stabilized, he really has done very well. We were back home in New Brunswick, he was transplant in September, we moved home in April and we technically could have come a little sooner, but I was really hesitant to leave Toronto. I felt like we were safe there and we were close to the hospital. So moving back home, I found really hard. I mean, my kids couldn’t wait to get home. But it was something that I was wrestling with in that what are we going to do? What if things go badly? We had gotten used to traveling back and forth over the years. The closest PH center is also in Toronto. I was used to running back and forth to Toronto with him a couple times a year for follow-ups. But there was just something about being right there and being close to the hospital.

But we came back home and he did really well. We would go back to Toronto a couple times a year initially, and then once a year. Then the years just kept ticking by and he kept getting older. Then my new fear became, oh my God, we’re getting close to the point where he’s got to leave pediatric world and we got to go down the street to the adult hospital, and yikes. That’s a really great problem to have when you are in this world. But that brought a whole new set of challenges with it again, because as an adult they don’t want to talk to your mom and dad. They want to talk to you as the patient. As an 18, 19 year old kid, we were always the ones who were the spokesperson and the advocate for him. It was really challenging. At that point he was almost in denial about anything. He’s 18 years old, he’s invincible. I don’t need to worry about all this stuff. I don’t want to talk about it. I don’t want to talk about my medications.

So we went through quite a rocky transition time, I would say, for a couple of years where he was just not as compliant as he should have been. We were trying to be the bridge, but it got to the point where the hospital didn’t want to talk to us anymore. That was a challenging time. I mean, he’s 25 years old now and it’s gotten much better. That was probably one of the hardest times in just managing his illness, was having to turn it more over into his hands and trust that he was going to do the right things.

I never thought we would get this far. I think back to these times, well, initially when he was diagnosed, we were diagnosed in a hospital that had no experience with PH. It was basically take him home and enjoy the time you have left. We really never thought we would reach the milestones that we’ve reached. As he got sicker, we got to make the most of every day, because I don’t know how many days we’re going to have. I never thought we would get to this point. Even at the transplant point, it’s like, are we going to get through this? Are we going to come out the other side of this? Am I just dropping my son… Is this the last time I’m going to see my son, as I wheel him to the OR? You just kind of live with that in the back of your mind every day.

Even now, people will say to me, “So everything’s great. He’s fine now.” I’ll be like, “Well, I mean, yeah, he’s really good right now.” And that’s awesome. But you just don’t know what’s around the next corner and it’s a hard thing when you really sit with it to process. But again, I mean, I just try and look at it as none of us know. He’s living with something that he knows he is living with every day and none of us knows what’s next in life. I just watch the things that he’s been able to do. That day that in the restaurant where he is like, “Yeah, I’m going to play hockey.” I was like, “Okay.” And he had the transplant in September and another young fellow had a transplant around the same time, and they had a bit of a competition going, who was going to do the best in rehab and who was going to bike the longest? He used that and I started watching him.

Then he would start asking the doctor every appointment, “So can I go play hockey now?” I’m talking October. The guy still has staples in his chest… And they’d be like, “Oh, no, no, not right now.” I’m like, oh God… And so every time we would go he would ask this question. So in January we’d go to the hospital and he does the same thing, “All right, so can I start to play hockey now?” And the doctor says, “Well, do you think you can find a league that has no contact?” He goes, “Oh yeah, yeah, yeah.” He said, “I don’t see why not.” I just about fell off my chair. He’s like, “All right.” So the next thing I know we’re sitting white knuckled in the rink watching him try and stand up on skates. He didn’t even remember that he used to know how to skate, he hadn’t skated since he was five years old. He was 11 and they put him on a team with, I think they were seven-year-olds with this amazing coach who was like, “We’re going to get this kid skating.”

He had a ball and he just went from there. I would be panicking about him wanting to do something and he would look at me and say, “Mom, I didn’t go through all this just so I could keep sitting home watching everybody else do things.” I was like, “How do you argue with that? All right, get out there and do what makes you happy, because that’s why we did what we did.”

So my name is Jennifer Gendron, and I am aware that my son Braden is rare.

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