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I'm Aware That I'm Rare: the phaware® podcast

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Sam Bowker and Ken Porter - phaware® interview 203

Nov 2, 2018

Sam Bowker is a pulmonary hypertension patient on triple therapy from Canada. Ken Porter is her partner and caregiver. They discuss Sam’s diagnosis and creative ways they work together to manage her PH treatment regimen.

Sam:
My name is Sam Bowker. I'm a patient at the Vancouver PH Clinic. But I live in Victoria. I was diagnosed with pulmonary hypertension almost three years ago. So my diagnosis date is November.

Ken:
My name is Ken Porter. I'm Sam's partner. We've been together for eight, nine years now. I’m supporting her through this, and yeah, it's been a ride.

Sam:
I was running a race series, and was in super-good health. I'm a teacher, so I took a group of students to France. And while I was there, I started to notice that I was having this weird chest pain. Which was strange for me because I was super active. I wasn't really expecting that. And then I came home and it just got progressively worse. And worse. So I went to the doctor and he told me I had anxiety. I was like, "Well, I don't really feel anxious, and I'm getting chest pain when I walk upstairs. So it's not like that's causing a lot of anxiety." So, after visiting him quite a few times and kind of harassing him, he sent me to a cardiologist, and the cardiologist did a bunch of tests. He said I was in really good health. I was insistent that something was very wrong. And so he sent me to do an stress echo, so I had to ride a bike while they did the echocardiogram. As soon as the tech touched the wand to my chest, she said it's pulmonary hypertension. Then she left the room. I was like, "OK..?." And then when she came back, I said, "What's pulmonary hypertension?" And she said, "I'd rather you talk to your cardiologist about it." And then she said, "Don't Google it." So of course, I did Google it. And we were pretty freaked out.

Ken:
I remember that day. Sam sent me a text, said pulmonary hypertension, and of course I immediately Googled it. And it was a shock. I was at work; I couldn't work for the rest of the day. That evening, we were both in shambles, trying to figure out what this meant for our lives, and where we were going to go from there. And we hadn't even talked to a specialist yet. That was just the opinion of a tech talking to Sam, and then us trying to figure through it. It was an adjustment, just trying to figure out what this was going to mean for us, and we got over the initial shock after a few days. Once we were able to talk to a specialist, we realized, "Hey, this is an evolving area. This is an evolving science. There's a lot of really good things happening." All the stuff on the internet that we could find was likely already dated, which was good, because it was really scary. Who knows what the prognosis was going to be, because of the evolution of medicine and technology.

Sam:
I finally got to the clinic in Vancouver, and they did a right heart catheterization and right away, I wasn't really given another option. I was told right away I was going to go on IV meds. Because I was really sick. But then, of course, they started me on oral meds as well, because they're trying to get all of the different pathways. We tried those for a few months, and it wasn't really having as positive an effect on my pressures as they liked. And so I started on a third therapy. So I'm on the tri-therapy.

Ken:
Initially, we had a series of sessions, when they put Sam's line in, the rules state you can't leave the hospital until you can show that you can mix the medicine. As we were going through the various workshops and understanding how to do it, we once again, massively overwhelmed. "How are we going to live life, how're we going to mix meds and be able to do anything else?" We recognized very quickly, that it's going to be a team effort. It's going to be an adjustment. We were able to show, I think in a matter of days, that we could effectively do this. We were competent. So they said, "You could leave the hospital." We left as fast as we could, because we wanted to go home. I think we were in the hospital for a total of a week. When we got home, and ever since, over the course of the last three years, we've divvied up mixing the medicine. And we've gotten really good at it. You think most people spend some time on the couch watching a movie or TV or sports. So now, instead of just lying on the couch while watching TV, movie, or sports, we'll mix medicine while we're doing that. So we've managed to make it a part of our lives. And yes, it's something additional we have to do, but we've managed to make it work. And we've even noticed that sometimes we won't have the TV on. So, it provides an opportunity for us to bond even further. We can chat while we're making medicine.

Sam:
It's like a bizarre date.

Ken:
Yeah, it's a bizarre date. Traditionally, we wouldn't have maybe sat down and chatted while we were doing something like this. So, yeah, there's positives that come out of it. Yeah, it's something additional we have to do in life. But we make it work.

Sam:
I think that there's a trust that has to happen there, because you really are, when you're putting the cassette on you. It's your life source, right? So you have to trust your partner and know that what they're doing is what you would do. I'm really lucky and that Ken's really supportive, and I have that trust with him. It's really helpful. It's made our lives so that I can do things sometimes that I wouldn't normally ever be able to do. For example, I did my yoga teacher training in, so Ken had to mix my meds every weekend because I wasn't there to do it. It's super helpful to have someone else who can mix meds for me.

Ken:
The last two summers, Sam and I have been fortunate enough to travel to Europe. So we figured out how to make this work when we're traveling, too. We will get AirB&Bs that have fridges. We'll set up a little thing on the kitchen table. We'll make the medicine, and if we both do it together, we do it fast. It gives us more time to go out and enjoy the sights. We've gotten really good at it.

Sam:
I was leave for three months while I got adjusted to doing all of the medication business, and then I went back to work. Originally, I went back to work full time. I was a schoolteacher, So, full time working with the kids, I found that I was just coming home and I was totally exhausted. My team is incredibly supportive. They really focus on our quality of life. Anything that I'm like, "I want to do this," they're like, "Awesome. Do it." They want to see us doing what we love. And I worked really hard to become a teacher. It's something I really wanted to do, I was really passionate about it. So I didn't really want to give it up. So we've managed to make it work.

Ken:
I'm an athlete, and so I play a tremendous amount of ice hockey. I play ice hockey with a close-knit network of friends that I've had since elementary school, which is insane. It gives me an avenue to go out and exert energy, and just come back recharged. I'll play ice hockey two, three times a week. And if I'm feeling down, maybe I also go to the gym. I just remain really active. Sam and I as a collective also, we've engaged in meditation, which we found has just been a fantastic tool to use to center ourselves and stay calm. I wouldn't say nightly, but we're getting pretty good at doing it probably once every two days or so. Engaging in some form of a meditation practice. And one other thing we've done that has been really a lot more beneficial than I could ever have anticipated. We went out and bought two kittens. And just having two cats around the house that are really cute and want to cuddle. We could feel it change the energy in the house, the demeanor. It was a really valuable tool. We had heard from some people that pets are a really good thing to have with the condition. It's exceeded our expectations what the two kittens did for us.

Sam:
I would also say, do whatever you can to stay positive. I think that that really improves your quality of life. It's hard sometimes. You get dragged down by all the things that happen in our community, and all the people that you get close to. And then there's a lot of loss.

Ken:
I would also add two things. A, recognize that it's an emotional roller coaster. You're going to have perhaps days where there's bad news, or you're going to be overwhelmed by some of the approaches you may have to take. But honestly, it gets better. You learn to make it a new normal, and to make the best of life. And I think it's important just to recognize that. When there can be times when you're really way down, you will get back up, and just once, like what Sam says, stay positive. We're living in such an exciting world right now, where the evolution of medicine and technology is mind boggling. Back in the '80s, when someone got sick, they may be faced with the stark reality that there's not going to be something new that's going to come in the near future. And they [just had] to deal with that. I am just so excited that we live in a world right now where a new medicine and new approach and new technology could come out in the next three, four, six months. Who knows? That could resolve all kinds of issues. So, when it comes to pulmonary hypertension, I am very optimistic. I know there's lots of money, lots of resources going into trying to look for a cure, and ways to better manage this condition. A year from now, who knows? You have to have that positive outlook, and recognize that there could be a solution around the corner. Hold out hope for that, for sure.

Sam:
I'm Sam.

Ken:
I'm Ken.

Sam:
And we're aware that we're RARE.

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