I’m Aware That I’m Rare: Kristine Ritchie (422)

the phaware® interview

Canadian Pediatric PH Care Partner, Kristine Ritchie, discusses her son Brendan’s 10 plus year journey with pulmonary hypertension, the importance of self-care and the impact PH has on her entire family.

My name is Kristine Ritchie. I live out in West Kelowna, British Columbia, Canada. I have a son who is 10 1/2 years into his diagnosis of pulmonary hypertension. He was diagnosed on 12/12/12. While we were out walking, he collapsed. We were really lucky, we got a diagnosis within two weeks of his syncope episode, and that’s what kind of started our PH journey.

There’s pivotal moments within the PH journey where you change as a person, as a parent. It just kind of forces you into a different head space. We were blissfully ignorant of IV medications. We knew that they were there for the first five years of Brendan’s journey. We hung onto the pills and then we moved into an IV and it’s a whole different lifestyle.

I took to Facebook and found some great supports there, which turned into physical meetings, which was really great. I was able to get in touch with some families in Edmonton. As time goes on, I hope that I’m the support and I’m the inspiration for caregivers, parents, but even patients themselves. I look at what Brendan does and he inspires me with everything that he’s gone through, whether it be surgeries, or infections, or IVs. I take my inspiration from my kid, my 15-year-old-kid.

We have a daughter as well. She was two years old when Brendan was diagnosed. We never told Brendan that he was sick. We didn’t concentrate on that. As parents, we carry that load. He is who he is. He’s got pulmonary hypertension but that doesn’t define him. We find ways to do everything. Whether he’s water-skiing with a pump attached to his arms so that he can be out there or tubing, or going golfing in the heat and getting a first job as an umpire. His sister doesn’t think that he’s any different than any other kid doing that out there.

People who hear Brendan’s story and actually learn what pulmonary hypertension is, they realize that that Brendan has a hard go and so they do things for him like give him the hockey stick at the hockey game or buy him the jersey. Just little special things. To his sister, that looks like something really cool. So she said when she was younger, she wanted to have pulmonary hypertension because she wanted the special things. But now that Brendan’s evolved into the IVs, and the site changes, and the long hospital stays, and the surgeries, she gets a little bit better of a picture of the awful things that happen with it. But we still keep it normal.

Her normal is definitely different than any other child that she would know, but she doesn’t know any difference. So she wants the special things and we try and do as much as we can for her. But realizing that Brendan has other needs and a bigger head space, it’s hard to include or hard to describe what we do as a parent to try and equalize our time and equalize our head space because pulmonary hypertension is such the forefront of your life because it has to be.

You need the time for the appointments. You need the time for the hospital. You do that for the one child. Then you have the other child over here who has to stay at home and you try so hard to make sure you’re cognizant of what the child without the disease has and the child with the disease has. It is a constant struggle and being mindful to what you’re doing with each child and trying not to be an unequal parent to both of them. But realizing that, wow, you’ve got a lot going on.

In 2018 is when we started kind of the IV journey. One day, you’re able to just go up and hug your kid and go run into the lake or throw them in the shower if they get dirty. Then, within a day, you have to be mindful of an IV line that you don’t want to bump and have it fall out or it gets caught on a door because he’s walking around the house with shorts on and he’s got to know that there’s something hanging off his side. Having to be mindful of where you put your hands on their backs so that you can hug them like you really want to. That I found was really hard for me. Sometimes, I had to wait until he had his IV came out so I could hug him how I wanted to.

That was a huge milestone in my parent mind, going from no pump, and no line, and no care about infections and different things like that. Then, all of a sudden being thrown into a world that’s every two to three days you’re changing sites, or pumps, or cassettes. Your travel bags change because you need to make sure that you have enough medication that if you get stuck somewhere, this stuff isn’t readily available on the Walmart pharmacy shelf. It’s delivered to your house by a specialty pharmacy. So that was a big change. Then, realizing that the type of medication that they were giving him wasn’t having the desired effect. Then, they went to another medication which his body was kind of rejecting the lines that they were putting in that. Then, he had to have open heart surgery and he was, I think the third child in Canada did ever have this surgery.

So that was another milestone, because now it’s life before the surgery and after the surgery and how things change. Now, we’re coming up in the next maybe two to five years of listing for transplant. But we don’t know. So you’re making sure that life is normal and you’re getting out camping, but you’re also trying to see and be mindful and cognizant of the different breathing changes. It’s such a small change that grows gradually over time. You have to be so aware of your person.

We live a far distance away from our PH clinic. It’s an 11-hour drive. I’m so glad that we’re able to live where we live. We live where people vacation. It’s the wine capital of Canada, and golfing, and beaches, and lakes and all that type of things. So moving away from that to a place where you’d be right near your hospital and right near your care, that’s great, but it’s not the lifestyle that we want Brendan’s mindset to be in all the time. We want to make sure that we have the separation so that when we go to the appointments, we still don’t make it about the hospital and we don’t make it about the appointment. We do something fun. We go mini golfing, we do some different stops, we have different sites that we see.

So just taking everything into context, it’s a full-time mental job on top of housework, and your regular job, and your other children, and your spouse and your friends, and oh, make sure you look after yourself in there too and have your self-care. Well, what’s that, right? What does that look like? Does it look like a 10-minute walk? Does it look like a Starbucks coffee on the way to work? That is the self-care, because that’s all you have time for.

I feel like PH parents make it look easy. It is not easy. It’s indescribable how difficult it is. But after being in this for 10 plus years, it’s normal. If someone says, “Describe what you do, or describe life before this and life afterwards,” I can’t remember. I have no idea. This is just our normal life and when you lay it all out and when you put everything out that you do, some people can’t really fathom it.

I use the term blissful ignorance a lot, because I don’t think ignorance in that respect is a bad thing. I wish that I was like that. I wish I could go back 10 years ago or 11 years ago when Brendan was three and we had no idea. That would be amazing. I can’t even describe what I would give to go back to that because I had no idea. Thankfully, if it wasn’t for this, I wouldn’t be the person that I am and I wouldn’t have the small likes, and loves, and enjoyments that I do have. Although I do wish that Brendan and I could change places. If I could change places with him in a second, I would so that he didn’t have to deal with what he deals with. But I have to keep going and keep forging ahead and help him live the life that I want him to have, whether he has a PH diagnosis or not.

Until about a year and a half ago, he had nurses that went to school and I was always like, man, when he goes to high school, we had great nurses, we had a great team that supported him at school, but as he got older and as he was really able to say like, “I don’t feel well today or I don’t want to do this, or this makes me feel strange,” or whatever have you, his dad and I were like, we don’t want him to have a shadow at school. We want him to have the high school experience that he’s not being always supervised, and always followed by somebody, and always just having something else there around him. We want him to go hang out with his friends and go laugh or maybe have a little girlfriend that his mom and dad don’t know about. You know what I mean? We want him to be able to have all the experiences that all the other kids have.

It was a really hard adjustment, but making sure that Brendan was comfortable enough, or I guess it’s not Brendan, Brendan was comfortable, us being comfortable that he was able to recognize and actually voice that something was wrong. Because when you’re a kid, you don’t want to always tell your parents something. He even said today, I had no idea that for the first week when he had his sight, he was like, “I was told that if it hurt or something changed that I should ask for a site change.” He’s like, “It hurt but I just said it was okay, because I didn’t want to have another site change.” So it’s those types of things.

We have a great medical team out in Edmonton. There’s decisions that he makes, that we make as parents and that his medical team makes. So every decision that he can make, he gets to, whether get his blood drawn at 9:00 in the morning or 1:00 in the afternoon. If he can make that decision, then that’s great because that’ll help him live with this disease, this condition and everything that he’s got. But also as a parent, we can see what types of decisions that he makes and engage how comfortable we are. Now, I trust him wholeheartedly. His medical team trusts him. He’s definitely shown us he can be his own person without having someone else with him all the time, which I think is really great.

As he gets to be 16, 17 and start driving, then we can say like, “Hey, see you later. Have fun. Let us know you get there safely.” He’ll be able to advocate and do what he needs to do. He’s done great with that at school. He’s a pretty cool kid.

As we look forward to him transitioning from pediatric care, to adult care, from living at home to living outside, I try not to have the selfish feelings like, “Oh, I’m not going to be able to have control over everything anymore.” Right now, I’m starting to teach him how to advocate, and what to say, and what to look for, and trusting him that getting other people to be able to trust him, and listen to him because he is still young, but making sure that he has the confidence in himself and being able to speak for himself I think is pretty important.

My name is Kristine Ritchie, and I’m aware that my son, Brendan, is rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com @phacanada