I’m Aware That I’m Rare: Jennifer Gendron

Canadian caregiver Jennifer Gendron has been working with the pulmonary hypertension community since 2003, when her son Braden was diagnosed at the age of 5. She discusses Braden’s PH journey that ultimately led to him having a double-lung transplant at The Hospital for Sick Kids in September 2009.

Transcript;

My name is Jennifer Gendron. I am from Hampton, New Brunswick. I am the mom of a young man [Brayden], who was diagnosed with pulmonary hypertension when he was five, and received a double lung transplant nine years ago. He’s now 20, so I guess you would call me a caregiver for life, but I’m. caregiver now of a transplant recipient.

The onset was very subtle. It took a long time for us to get a diagnosis. Looking back now, I guess there were lots of signs, from probably the time he was 1 or 2 years old, but very subtle. What really pushed the diagnosis, he was getting short of breath and had a persistent cough. They thought he had asthma. He was diagnosed that same summer with asthma, so he was 4 years old I guess, had just turned five. By fall, things were getting worse. We were finding that he wasn’t able to walk very far. He was always complaining he was tired, wanting to be carried around. We had two little boys at the time, twins who were 3.

Then in September, things got really worse. What eventually happened, he woke up one morning swollen. We thought he had an allergic reaction. When we took him to the hospital. They did an echocardiogram and discovered that there was fluid around his heart, and he was in congestive heart failure.

Because we live in New Brunswick and there’s no Children’s Hospital near where we are, they did some initial testing, suspected it was pulmonary hypertension. They were going to send us to Halifax, to the Children’s Hospital, to confirm the diagnosis with a heart catheterization, but he was getting progressively worse very quickly, so we ended up being airlifted to Halifax. They were planning on doing a heart catheterization to confirm. He was sick at the time with a virus, so we ended up being there for about a week, before they could actually do the heart catheterization. And when they did, they confirmed the diagnosis.

We were absolutely shocked, because in the matter of a week and a half, we had gone from thinking we had a child with asthma, to being told that he had a terminal illness. Basically we were told at the time, there wasn’t much they could do, and that we should take him home, and enjoy the time we had left, was the diagnosis we were given.

At the time, there wasn’t very many options for therapy. Flolan (epoprostenol) was the therapy of the time. They were just in the midst of doing trials for sildenafil. We were told by the doctor at this point, who was not a PH Specialist, that we had two options. We could put him on Flolan, and he explained that it was an IV therapy. It was very complicated. He told us we could try this oral therapy, that they were just experimenting with. So that’s the route that we went. At the time, I really wasn’t ready to just take that at what we were being told. I fought very hard to get to a PH Center. That was in September. It was about three months later before we actually got to Toronto, and were seen in the Pediatric PH Clinic.

By that time, the sildenafil had started. He was improving, so we stayed with that treatment for probably a couple of years after that, but he did end up on IV. In 2005, he was diagnosed, we started on the sildenafil. Couple years later, when things started to deteriorate, by that time Tracleer (bosentan) had come on the scene, so he was started on that. He was on combination with those two oral therapies for another couple of years. But then things continued to progress really quickly. So in 2009, he was started on IV Flolan. He was on, at that point, all three of the drugs.

He’s our oldest, so we had two younger boys. They are not quite two years younger than him, who are extremely athletic, and wanted to play every sport that was going. As Brayden got sicker, that was always something that was really a struggle. We were trying to keep a balance in the house, and the let the younger boys do their thing, but it was very hard watching him get sicker and be able to do less and less, while they were running around doing more and more. That was a really tough thing.

In those years, he was the oldest, but the younger two were the ones that looked out for him all the time. They were always running and getting things for him, and helping him. It was almost like the roles were reversed. The little guys were the big brothers, and always taking care of him.

I guess it was probably about a year after he was placed on Flolan, things started to slip again. We had an initial transplant assessment, but then things to stabilize a little bit. We knew transplant was looming, but that we were going to be able to hopefully get a little bit more time. The next year he got sick with pneumonia. After that, he really never seemed to bounce back. We went back to Toronto, and did another assessment. It was time to really start thinking, “The window is closing here, if you’re going to pursue transplant. The time is sooner than later.” We went through the whole work up again.

We live in New Brunswick, and being so far from the center added another layer of complication. So in order for him to be listed, we had to move to Toronto. In July of 2009, we went back, did another assessment. He was told that he was a candidate. By that time he was 11, and our younger boys were nine. It was a tough age, because at that stage he’s old enough to be a little bit more involved in the whole decision making process. For us, I think that was one of the hardest things. It’s this huge decision to make, whether or not you want to go ahead with transplant, and how much of it would be his decision, and how much would be ours.

The day that we made the decision, we were in Toronto waiting to hear back from the hospital, after all of the testing had been done. He had always told us that he hated hockey, and hated sports, and that they were really stupid. I think it was from all the years of being drug around, and not being able to play. So, we’re sitting in a restaurant, my cell phone rings, it’s the hospital. They said they just wanted to let us know all the tests came back, he was a good candidate, and that he could be listed. I told him, I said, “That was the hospital, and they said that you could go on the transplant list.” And he said, “Yes! List me. I can’t wait. I’ll get some new lungs, and I’ll be able to play hockey.” At first I lost it, and I said, “You know what? There’s our answer right there.” Obviously, there’s a lot of things this kid wants to do, that he can’t. It’s time to make the next move.

We were incredibly lucky, because the whole process went really smooth. That was July. We went back to New Brunswick, packed up our stuff, rented a U-Haul and went back to Toronto. Got to Toronto in August. He was listed. We knew we were there for an indefinite period of time. We figured it would be months. We barely even got settled, a month later he got a call that there were lungs available.

He did incredibly well. A lot of people I know over the years have said to me, “If transplants a cure, basically why doesn’t everyone go get a transplant?” It’s not the simple, because you’re trading one set of issues for another. You never know how it’s going to go. You’re taking another big risk. He’s one of the really lucky ones. He’s done incredibly well. He is a very determined, you could say stubborn, young man. They took the ventilator out in the ICU. The very first thing he said to me when he started coming to was, “I told you I could do it.” He knew he was going to get through that surgery. Everything was, “I’m going to get out of the hospital. How fast did the last guy get out? Okay, well I’m going to get out sooner. How fast can I do this, and when can I do that?” Every time we would go to an appointment he would ask the doctors, “When can I play hockey?”

He was transplanted in September. His October check-up he asked, and at his November check-up he asked. In January, we went for the follow-up, and he asked the doctor again, “When can I play hockey?” I kept trying to tell him that he wasn’t going to play hockey that year, that he had just had major surgery and he would have to wait. The doctor said, “Can you find a league where there’s no contact?” And he said, “Yeah, I have.” And he said, “Well, then I don’t see any reason why you can’t play right now.” I just about fell off the chair.

Four months after his surgery, he was putting on skates and out on the ice. He played with a bunch of kids that were a lot younger than him. He could hardly stand up. He didn’t remember ever even being on skates. He skated when he was little, but he didn’t remember. So at 11 years old, he started playing hockey for the first time ever. Then it was just one thing after another. It was, “what can I try next?” Just last weekend, he celebrated — we call it his “re-birthday.” So nine years.

Physically he’s done phenomenally well. Emotionally it’s been a struggle a lot of the time. I think a lot of it was the age, being a pre-teen, being in middle school, and trying to adjust after being a kid who was sick his whole life, and what he remembered, and never having been able to do the things that normal kids his age could do. He really never had a time that he was super stable. A lot of the patients that I meet, do really, really well. Brayden never really got that well, that he was able to do a lot of things.

I think never having been able to be a normal kid, I say that loosely, but he just struggled with how to fit in. Even the dynamic in our house. We went from, being the guy who was always looked after by his brothers, and by his dad, and by [me] to being a kid who, “Well, you don’t really need us to run and get that for you, because you’re able to do that now.” It was really hard for him to adjust to just being an average guy. The last few years, that’s been the struggle. Not so much the physical side of things, it’s been more of the emotional/social side of things that have been difficult. It’s was super tough. Never really having to let him go do things, because he wasn’t really able. So having to try and let go, and let him take the normal steps. It was tough. It was a big adjustment.

I guess for me, a lot of it was maybe not wanting him to do things. The hockey for example, all these things thinking, “Oh my gosh. Is he going to get hurt? Is he going to be OK?” I remember him saying to me one time that I was worrying over something he wanted to do, “Mom, I didn’t go through all of this surgery and all of this stuff so that I could just sit back and watch other people. I want to live my life.”

So, when you hear something like that, it’s like, “All right. You know what? It’s true. He didn’t go through all that, to be held back from things he wanted to do.” So it’s just like, “All right, you got to just let go.” It’s still hard. I mean, today it’s hard. He’s 20, so it’s getting even harder, because now he’s an adult, and he’s out there wanting to do things. We have let go a little bit more. He doesn’t want to hear his mom say, “Did you take your pills today? Have you done your pulmonary function test?” He doesn’t want to listen to that right now, but it’s hard to not still want to look after him.

My name is Jennifer Gendron, and I’m aware that I’m rare.

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