Kaitlyn Salonga - phaware® interview 502

Kaitlyn Salonga shares her journey of resilience and advocacy while living with pulmonary hypertension (PH). Kaitlyn recounts her fight for personal autonomy, including a successful battle to secure surgery for her reproductive health after initial denials due to weight and health concerns. Through her triumphs, she highlights the importance of advocating for oneself in the face of medical and societal challenges. Her story is a powerful testament to embracing one’s identity, breaking down stigma, and showing that life with PH can be fulfilling and bold.

My name’s Kaitlyn Salonga. I also go by Kate, or on social media as Squishy Lung Syndrome, which is how I like to describe my disease of pulmonary hypertension to those who might not be so familiar with it. I was diagnosed in December, 2018. For my particular treatment, I’m on triple therapy, so two oral pills and IV Caripul. Last time I chatted here, it was mostly about how I had recently gone through a breakup in my relationship of 11 years. Unfortunately, we were the example of what can happen negatively once a patient gets diagnosed. 
 
That resulted in me being a single and having to navigate a new version of my life where I was living on my own and having to be my own caretaker and having to mix everything by myself. Once I got comfortable in all of that, I was able to start dating again, but that still brought up the issue of pregnancy versus PH, which do not go hand in hand as most of us know. I brought up the topic of birth control again to my doctors. I was fighting to have my tubes removed or something that was a hundred percent proof, because the IUD was not a great option. My birth control pills were half as effective, because of my PH meds, so I wanted something that was foolproof. 
 
Unfortunately, the first doctor that I had spoken to about three years ago had said I was too overweight and too sick to operate on, which is a harsh thing to hear when you’re trying to get an operation that could save your life or be preventative in something that could harm your life. I asked the doctors again, “Let’s have a second opinion.” I was very lucky that a doctor in Richmond was happy to do the surgery. I had a date, I had signed forms, only to be told that the anesthesiologist disagreed and they canceled the surgery. 
 
So, I was back at square one. I was very grateful to her because she understood the risks that were to be taken if I didn’t have the surgery, which is what a lot of people were not kind of open to, which is basically if I get pregnant while I have PH, my heart’s going to explode. Obviously, that is something that we want to prevent. She understood my concerns as a patient, that I wanted to take charge of my sexual health. It wasn’t a situation where I could ask a long-term partner, “Why don’t you get the vasectomy so I can have control of my body?” This is something that I wanted to do for myself and my future. She actually referred me to another doctor and we set a date for March, and I finally got my fallopian tubes removed. 
 
The surgery was successful. I had no complications in it other than some allergic reactions to the face mask that they used, which was completely unrelated to my pulmonary hypertension. I’m happy to report that all went well, and that is an option, if your PH is stable, that you can bring up to your doctors. I want people to know that this is something that they can do to take charge of their sexual health. And if you want to learn a little more about my experience, you can actually check out the article that I wrote in PHA Canada’s Connections Magazine about Sex & PH. 
 
I had the pleasure of rejoining a community choir that I had spent a lot of time with in my twenties. I wanted to kind of prove to myself, can I still sing with a lung disease? That was a very daunting question because that was part of my identity for a very long time. To be burdened with this lung disease and to have this thing that I worked so hard on for so long kind of taken away from me, there was a lot on the line to see if I could actually handle rehearsals and learning music and putting effort into all of that, and standing for a whole concert to see if I could perform again in front of the stage and doing what I love to do. I’m happy to report that after eight weeks of very compacted learning and rehearsal and very grueling work, I was actually able to do it again. I was filled with so much joy and a personal accomplishment after that experience. Unfortunately, that kind of led to a different experience.
 
Being somebody who has mobility needs and considers themselves disabled and is also attached to an IV pump, I was having conversations with the directors about the accessibility of this space and how I had to climb up and down stairs just to get to rehearsal. That winded me. I couldn’t get up to use the bathroom because of those stairs, and simple things like that that a lot of able-bodied people don’t necessarily think about, especially in the frame of a younger person. Unfortunately, with that organization, we had some photos taken on concert night. I was feeling good, only to realize that when those photos were shared later, my site, my dressing, and my tubes that were connecting me to my life-saving device were photoshopped out of the picture. 
 
I asked them to take it down. I asked them to remove it from all marketing materials, and I told them I do not consent to this form of ableism. The organization has apologized for the actions that were taken by the photographer, not by the instruction of the organization. But that’s an example of the subtle things that might happen when you are in this situation of kind of approaching this world of ableism and disability awareness. It’s little things like that that can really frame your perspective of how far we have to go still in our work with ambassadors. 
 
On the flip side of that, I’ve actually had the pleasure of working with a photographer, Tilly Nelson, who was the photographer in residence at Langara. She asked me to be part of a project called We’re Already Here. This project highlighted the fact that disabled people are all around us, people with visual differences are all around us. It’s time that society acknowledges our contributions. I was very flattered be her tube representative. I was rocking the pulmonary hypertension devices and the little inscription on my poster that was hanging up in this college, in this art exhibit for about a month said, “I deserve a seat at the table.” 
 
I think what I’d love for people to take away from this is not everybody with pulmonary hypertension considers themselves disabled, and that’s okay. That’s an identity that I would like to put on myself, and I’m proud of it. I think it has given me a lot of bravery and opportunities to speak up on people of other differences. We do have a lot of work to be done, but my hope is that people with pulmonary hypertension or any set of tubes specifically don’t feel so isolated that they don’t feel like they’re such this rare commodity. I want to see tubes in advertisements. I want to see tubes in leadership roles. I want to see more medical devices being understood as a common presence in our lives, because they are all around us. People do hide them, but they don’t need to hide them. They can actually use them. It’s part of their everyday lives. I just want to point out that it’s no different than somebody who uses a pair of glasses or a hearing aid. We just don’t see it as much. If we put more of it out there, then people are going to start feeling better about themselves. 
 
I’ve had good and bad luck traveling with my condition. Obviously, at the airport, you are usually instructed by security to take off your belt, take off all your bags, your jackets, and all of that, but I’m attached to my medical device, and I’m not about to stop my IV and unhook it just to walk through the security gates. Most recently from flying from Vancouver to Calgary, I had the best airport experience that I’ve had so far. It was acknowledged that I have a medical device. It wasn’t just me telling the people. It was them communicating to each other that there is somebody with a medical device that they cannot take off. That has been such a huge improvement from where it was. In earlier times, when I was traveling, they would think it was a weapon. Somebody actually was ready to pull their taser on me just because I was gesturing to my fanny pack just to say, “Hey, listen, I can’t take this off.” I’m very, very impressed with how far airport security has come, at least at YVR. 
 
I hope anyone out there who is on a pump device or is considering joining us, that you realize that it’s not the end of the world. It can actually be extremely beneficial, and that you can lead a really full and exciting life despite being attached to an external device. I hope this has opened your eyes a little bit as an insight to pulmonary hypertension and my life as Squishy Lung Syndrome. I hope that we can look forward to less invasive therapies in the future. I hope everybody on the outside looking in can realize this is part of our life and it’s our everyday norm, and that they can accept it, because we already are on our way there. 
 
 I’m Kaitlyn Salonga, and I’m aware that I’m rare.

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