I’m Aware That I’m Rare: Kaarina Wilson (321)
The phaware® interview
COVID-19 SPECIAL EDITION: Kaarina Wilson is a self-described Canadian patient, leader, chronic illness defeater from Canada. She discusses her PH, CTEPH, and scleroderma diagnosis as well as the road to lung transplant, rehab, recovery and self-isolation in a time of coronavirus.
This episode was recorded from her Toronto hospital bed on 4/2/20. Kaarina lost her rare disease battle 3 days later. #phaware #COVID19
My name is Kaarina Wilson. I’m in Toronto, Ontario, at the Toronto General Hospital. My connection is that I am a patient with pulmonary arterial hypertension, CTEPH, and heart failure-related-pulmonary hypertension.
So I first knew something was really wrong in November of 2017. I was on vacation. I really couldn’t handle the hills or even walking on flat land anymore. So I started the process of getting diagnosed after I came home. I was finally diagnosed in October of 2018. By March of 2019, I was on oxygen and in May I had PTE surgery, which is pulmonary thromboembolic surgery. Unfortunately, mine was a complicated case and I got worse really quickly after that.
I was in the hospital for a good couple months after that and I had some complications. I had some numbness after surgery in my feet, which was a forbearer of things to come. I had been bedridden for a while before surgery and I really don’t believe that I would have survived much longer if I hadn’t had that surgery at the time.
I was diagnosed in October of 2018 with CTEPH, which was my first diagnosis. Then my transplant happened in October of 2019. So in that time, after PTE surgery, my pulmonary pressure got worse fairly quickly. Then I’m learned that my pulmonary hypertension was not cured and that I actually had a bunch of different types, and that things were getting worse fairly quickly, because I was already in heart failure. After PD surgery, I went home and that was actually a really good time. I felt grateful all the time. I hung out with my mom. We had fruit salad every day and walked around in the sunshine with my walker, which I nicknamed Betsy. But then it sort of fell off a cliff. Not literally, of course, but it felt like one day I just woke up and things were a million times worse. It turned out that I had had mild heart attack. So things got bad really quickly. I’ve been in hospital since August 15th of 2019.
The original reason was that I developed Guillain-Barré syndrome. It’s an autoimmune disease that attacks the myelin. It basically demyelinates fairly quickly, like within hours. Then your nerves grow back, but it takes a really long time. So I haven’t been able to walk. It from the waist down and now it’s just from the knees down. So it is coming back. It’s just very slow. So I’m doing physio every day and I alternate between rehab and in the hospital depending on what’s going on with my lungs. After surgery I developed pulmonary fibrosis in my lungs and I’ve had pneumonia many times now, which led to the pulmonary fibrosis, as well as the fact that I have scleroderma.
I’ve had to deal with it like one day at a time. Sometimes even just like one breath at a time. I made myself some catch phrases, like “one breath, one moment.” Sometimes even just “this too shall pass” gets me through to the next moment. What drives me is I have a niece, she’s six years old and I want to be there to see her grow up. I want to spend as much time with my family as I can. My sister and my parents and all my friends. I have a great group of friends that are so supportive and so nonjudgmental. I have so many blessings in my life. That’s what drives me.
These days with the coronavirus and what’s been going on globally, it’s really affected me, because I’m not allowed to have visitors anymore. My mom used to come visit me every day. It’s changed the way that I communicate with people. It seems people are more receptive to communicating now in ways that are alternative to face to face. It used to be that if you couldn’t visit then we really wouldn’t speak, but now it’s like, oh, we can FaceTime or talk in another online platform, or even just, there’s so many different ways to communicate these days that it’s good to take advantage of them. It’s different than it was. There’s less people, there’s less supplies. It’s really sort of bare bones right now, because we’re just waiting and want to be prepared. It is an eerie world right now. Just like outside in the streets where there’s nobody, there’s nobody in the hospitals either.
So to everybody who’s recently diagnosed out there, I just have to say, keep the faith. Believe that the most positive outcome is going to happen. If you must, prepare for the worst. It’s not a bad idea to go into it prepared. I mean that both with powers of attorney and equipped with a plan. But just believe that it’s going to end up in your favor and chances are that with that it will. More times than not, it will. Just roll with the punches, because it won’t always, and you got to be able to move on from negative news and from negativity in general. Just keep positive. It’s the hardest thing in the world. Sometimes when people have told me to be positive, I wanted to just scream at them, but it’s the best thing for you. I truly believe that.
I don’t think I would’ve lasted three days without transplant. I was on life support and luckily I ended up getting listed and getting transplanted two days later. Oh, I was definitely apprehensive about it. Before I had a lot of time to think about the outcomes that could happen and I was, hemming and hawing, unsure if that was really the road I wanted to go down, because I know that it becomes the disease unto itself. You have to take a bunch of medication for the rest of your life and you’re immunosuppressed all the time. It’s hard. I wasn’t sure, but when the time came, oh, you better believe I wanted it. I desperately, desperately wanted it and it happened and I’m so grateful.
My name is Kaarina Wilson and I’m aware that I’m rare.
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