Christina Ryan - phaware® interview 584

She Was the Caregiver Until Pulmonary Hypertension Made Her the Patient

For Christine Ryan, being ill wasn’t the hardest part, letting others care for her was. Diagnosed with pulmonary hypertension after years of managing scleroderma, she struggled not with weakness, but with surrender. Used to pushing through pain for everyone else, Christine had to relearn how to listen to her body and accept limits without losing her sense of purpose.

My name's Christine Ryan. I'm currently and have been the living last 20 years in St. Catherine's. I received services for PH in Hamilton at St. Joe's. I was diagnosed 10 years ago, approximately, with scleroderma. Subsequently, relatively soon after that, they found that I had fibrosis in my lungs. It was inconsequential at the time, so I lived a normal life. I worked out. I was pretty physically active and I had my own company as a PSW, helping people as a caregiver. It didn't really start to affect me until, even though there was clearly fibrosis in my lungs, until about three years ago.

I don't know if it was the root evil of the progression of the disease, but I got COVID in August, three summers ago. Even within a month of having had it, I was short of breath. I noticed when I was taking my client to the dining room, pushing her wheelchair, of course we had to wear masks. I equated it to that, thinking I was out of breath because I had a mask on. Then, realized no, maybe not, when I was walking the dog and I was having issues. At first, most people blame it on other things, oh, it's because it's windy today, or whatever. Mind you, I was still exercising and didn't experience shortness of breath in the regard of exercising. But when I was walking, I was feeling it.

I talked to my GP about it. He sent me to a respirologist locally and the respirologist was not entirely helpful, but decided he was going to send me to Hamilton for further tests. In further testing, they found that I had pulmonary arterial hypertension. Of course, when I was diagnosed with scleroderma, like everybody, every single person, I went to Google and Googled it and found out I was going to be dead in four years. Of course, that sent me into a huge tailspin. I promised myself and my GP, I'm not doing that anymore. I really stopped researching at depth, the possibilities of anything else. I was just dealing with stuff day to day, because fibrosis in my lungs was terrifying enough. I really was in the dark.

When I was becoming short of breath, I did figure it was because of my lungs and essentially it was, but I figured that was it. It was just the fibrosis was getting a little bit worse. It had, when they did testing, they told me it had progressed a little bit. I really didn't question it. And then it was like I was gobsmacked when they told me I had pulmonary hypertension.

The mental aspect of it is entirely more challenging, because there's different sides to it. I've always been a caregiver. I'm a very strong person. To be put in a position of being the person that's sick and not being the person taking care was very difficult for me. Also at home, I have a husband with Type 1 diabetes who in the past has had great challenges. I have a 27-year-old son who is autistic and nonverbal. All of that going on and then being told that I had pulmonary hypertension and knowing, soon after I found that out what that meant, was more mentally challenging than physically challenging at the time.

Being a strong person, I kind of am just a doer, a goer. I just automatically went into, "All right, you got to do what you've got to do. You're not going to let this control you." The physical side of it quickly taught me, well, you've got it coming to you, girl. The physical part has been more challenging. I know that I use my son as leverage for me mentally in that he's my go-to. I have to get up. It doesn't matter how I feel. I've got to get up. Like I said, I'm his person. So I'm his entertainment coordinator. When I go to the gym, he goes to the gym. When I go to the movies, he goes to the movies. It's just my life. Without that, there is a possibility, I don't know for sure because I am a pretty headstrong person, that I would have had some mental breakdowns possibly. The days that physically I wasn't feeling well at all, that I would have just given into it and stayed in bed, whereas I have not done that. It is challenging being a caregiver for sure in that there are lots of days when I probably need care and I'm being the caregiver. So for sure, that is a problem. For sure. It is.

My son is partially a caregiver to me, as well. In a lot of ways, he's very perceptive and he probably understands more than other people do. He very much watches what people do in every aspect of his life. He's not very verbal, as I said, but he watches you do something and he can do it like that. He watches me do everything. I have Remodulin. He watches me do that. He knows the pain it causes. When we go out together to the gym, et cetera, he carries my oxygen tank for me. I use liquid oxygen, so it's fairly heavy. He carries that for me and he knows that's his job now wherever we go. It also keeps him close to me, so it's a good tool for me. He's very perceptive of it. When I've been in the hospital, I've done FaceTime with him so that he knew where I was. It wasn't just me saying, "I'm going to the hospital." He visually saw where I was, so he didn't worry that I was gone.

I belonged to a Facebook group, but I found that it was the biggest group and the majority of the people are Americans. Of course, there are some similarities in what we go through, but also a lot of differences, as well. I have been involved in a study through St. Joe's, Dr. Hambley for sotatercept. I was in the study for, I guess it was almost a year where we're pretty certain I was on the placebo. I was. Then, it became open label. I'll be getting my 11th shot of the actual for sure drug of sotatercept. My life has completely changed amazingly.

I think I had one shot before I had gone into the hospital. I had become septic last year winter. It was actually during my birthday and was in the hospital and I got quite ill. When I got out, I recovered quite quickly and the doctors were surprised at how quickly I recovered and they do attribute it to partially me being on the sotatercept. Since then, sky's the limit, baby. I am doing so well. When I was quite ill, I'm not one to exaggerate, walking from my house to my car to go out, I would be out of breath without oxygen. Completely different now. I never use oxygen now unless I am working out or taking the dog for a walk type thing, right? Doing real physical exercise.

It's literally changed every aspect of my life. When I was quite ill, I never considered traveling anywhere, even within Canada, because it's just like with my situation with my son, if something happens to me, then it just becomes this huge burden for everybody. We're actually planning to go to Florida, because my parents have a nice home there. We're going to go vacation, which I didn't do for the last couple of years because I was quite sick. It's changed everything. Even mentally, like I said before, I didn't let it get to me on a day-to-day basis, really. I just forged through things, but I feel like now I actually have hope for my future.

My advice to anybody that's just being diagnosed is give yourself grace. Definitely, the advancement in the medical field in regards to treatments for people with PH has been incredible. I'm hopeful for people in the future, especially when you see young kids. It's absolutely, it's different than when I was diagnosed even. I didn't have the hope for sure that I do now.

One thing I probably haven't been so good at is trying to understand my family's reaction to everything. They just can't fathom the idea of me not being here. They've dealt with it in a way that isn't typical of the way I would deal with it. It's just being understanding of everyone in your life when you're diagnosed.

My name is Christine Ryan, and I'm aware that I'm rare.

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