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

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

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Kaitlyn Salonga - phaware® interview 424

Jul 25, 2023

Canadian pulmonary hypertension patient, Kaitlyn Salonga discusses the impact PH has had on her job, her relationship and her mental wellbeing. 

My name is Kaitlyn Salonga. I'm from Vancouver, BC. I have been a patient of idiopathic PH since December, 2018.

For about six months before I was in the hospital, I was having a hard time sleeping through the night. I'd wake up gasping for air. I wasn't sure what was wrong. I thought it was anxiety. At work I started to notice that I couldn't walk as far as I used to be able to without having to catch my breath. It got to the point where I couldn't walk across the street without having to pause. I went to get a puffer refilled once by a tele-doctor. They said, "You don't have asthma. Why are you getting a puffer refilled? You need to go get a chest x-ray." The next day I went to go get a chest x-ray, and I was admitted to the hospital for a month right before Christmas. That was how I spent my holiday season of 2018.

It took about seven days for anybody to even say the words pulmonary hypertension. I was bounced around from hospital to hospital, because not every hospital, as I learned, has the same resources for tests and stuff. It just so happened that Vancouver is the lung center. At the time I was in a different city, so I had to get transferred over there and learn a whole new medical system and meet whole new doctors that said, "Okay, all of these other tests came back negative. Turns out you have pulmonary hypertension."

For me, I was so far along that just going on oral meds wasn't really an option. It was straight to one of the IV pumps. Our nurse at the time described that to me. The first thing I remember asking is, "Oh, so I don't get to go swimming anymore?" I've tried a couple of things. I have tried like a water skiing jacket. I initially tested that out to see if it could help me wash my hair because that's one of the huge pain points of being on a pump is taking showers, doing the full hair wash because it's no longer hop in the bathroom, a five minute process. It is now, put the dressing on, put the gauze between, tape everything up. If you're really, really careful, you do the Glad Press'n Seal routine over the line and everything like that. I've tried a couple things. None of them have been fully swim-proof, but I'm hopeful.

Unfortunately, the pump process was a two-parter for me, because it took them a while to get somebody who can actually do the Hickman line insertion. For the first week or so, I was on a PICC line, which means there is an IV in my arm instead of going straight through my chest. That was pain that I didn't need to experience. Then of course, I remember the worst parts of the procedure where they put my Hickman line in, unfortunately, but that led to actually being able to get on the medicine.

Titrating was not fun. It was a lot of headaches and fatigue, but eventually you get a sweet spot where the medicine works for you and you can kind of walk again. You can walk across the street, you can walk to the grocery store, you can lift your groceries. That was a really, really nice point to get to, but it was a lot of work to get there.

Originally when I was diagnosed, I was in a very high demand leadership role on a finance team, which was not ready to accommodate any sort of accessibility or time off needs. Once my short-term disability was up with that company, I actually had to leave it because their long-term disability options weren't going to work for me. Then I took a couple years off to just relearn how to become mobile, have time to titrate up more for my meds and stuff like that. Eventually I got to a point where I could work 30 hours a week, so not full-time, but enough to bring in a little bit of income, do it independently, and still be able to balance all of my medical issues at the same time.

I was essentially in quarantine about a year longer than everybody else. Because I was diagnosed at the end of 2018, I kind of spent a little bit of time feeling kind of awful because of all the titrating. Then COVID happened. It was extra scary as somebody who was extra vulnerable. I was really careful to stay inside, kind of minimized my interactions with people who were in my life who had traveled or anything like that. It was really isolating and lonely for a while. I had a very good support system of virtual supports that I could reach out to.

Because I was diagnosed in December, 2018, I just missed the last PHA Canada conference that was held in Vancouver, my hometown, by about three months. Every single time somebody tells me, "Oh, we had the last conference in Vancouver," I'm like, "I just missed it," so that's too bad but I was not without very good resources and supports. My nurses were very communicative. Everybody says they've got the best team, and I'm like, "No, I've got the best team." They were very quick to give me resources to PHA Canada and set me up with a counselor to kind of just work through all of this offline.

It's very interesting being here solo. I recently left my partner of 11 years because they decided that they did not want to financially support a sick person anymore, which is something very harsh to hear. It really opened my eyes to a better version of life that I could be living maybe without somebody who felt that way about me. I am here and I am looking at these people with their husbands and their children and their mothers and their siblings that are all here to support them, and I'm very aware that I am doing a lot on my own. I unfortunately am estranged from some of my family and a lot of my friends are located a little bit further away from me than it is really accessible. I live alone in a studio apartment, but I'm trying to make it work. A lot of the space is dedicated to boxes of syringes and cassettes and everything like that, but it's a space that's mine and it's a new beginning.

It's hard. It's definitely not easy. I do feel alone a lot of the time, but I know that I am not without people who I can reach out to if it gets to be at that point. Unfortunately, life doesn't stop for PH. It keeps on going, and it's unfortunately not the worst thing that I'm dealing with or that I have ever dealt with in my life. My body really just goes into fight or flight mode. I know I have to get this done to get through the day. So yeah, I'll mix even if the rest of my life is falling apart and even if I just had to pick up all of my stuff from my ex's house, but there's still tomorrow.

Everybody's different. It's no use comparing your experience to someone else's to see at three months they were doing this much and maybe at three months you are still titrating up and still getting rid of these side effects and still going through all of that. There's no use saying, "Oh, my six minute walk test wasn't as good as theirs." Everybody's got their own experience and their own bodies, and eventually you'll find something that works for you that will be your saving grace.

A lot of what I struggled with in the beginning was just learning how to get dressed in the morning with a pump and this tubing and where do I insert it? Does it go through the sleeve? Does it go through the collar of the shirt? Of course, it's different for men and women. We have to work with a bra or something like that. Where are you going to wear this giant game boy sized thing?

How I perceived myself in the mirror was a very large hurdle that I had to come over, but I was very fortunate recently to work with another differently abled artist, and we actually did a boudoir photo shoot of me and my pump, where I was the feature and not my pump. I even wore my CPAP for it. It was the most really liberating and celebratory experience that I could not be more proud of those photos.

My name's Kaitlyn Salonga, and I'm aware that I'm rare.

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