I’m Aware That I’m Rare: Jo-Anne Mainwood (433)
the phaware® interview
Pulmonary hypertension patient, Jo-Anne Mainwood, is a Canadian school teacher who couldn’t keep up with her students, friends and family. After a long journey of misdiagnosis, Jo-Anne details why PH is not a one-size-fits-all disease.
My name is Jo-Anne Mainwood. I’m from Ottawa. I’ve had diagnosed pulmonary arterial hypertension, the cause being idiopathic. I was diagnosed in 2009. About four or five years ago, it was my 40th birthday. I wanted to go and do the aerial park where you go up, climb the trees and swing across wonderful different obstacles. I could not keep up with my friends. I’d start climbing up the ladders, and I was just completely out of breath. I’m also a teacher of grades seven and eight. My classroom was on the second floor. So I’d be walking up the stairs and be completely out of breath. Grade seven and eight, that’s 13, 14-year-olds would say, “Hey, miss, you okay? You a little out of shape there?” I was a little bit mortified, but I thought, “There’s something going on here. This is not normal, I shouldn’t be out of breath just walking to my classroom.”
I could not keep up. It was embarrassing. I had two young children at home. It got to the point where I was so fatigued and so tired. I just didn’t want to go out anymore. I just wanted to hide with the covers over my head, because when I did go out and when I did a lot of the things that I used to really enjoy, it was so difficult. I was breathless and embarrassed and just felt out of shape and not like myself.
It was a long journey getting to the point where I was actually diagnosed. I went to my family doctor. I had two children. I put on a bit of weight. And so it started with the usual, “Oh, you’re out of shape, you’re out of breath.” Then, there was an asthma diagnosis and there were allergies that were diagnosed. Finally, when I just said, “No, there’s something severely wrong,” I got sent to see the asthma specialist, Dr. George Chandy, who was also a PH specialist coincidentally.
What’s important to note is that he is a PH specialist, and he was my doctor who diagnosed asthma. He missed my PH at first. So it is really hard to diagnose. But once I really started telling him how debilitating simple things in life had become, he just took the bull by the horns and said, “We’re going to give you every test. They’re going to get progressive, and hopefully we won’t have to go through all the different medical diagnoses, but let’s get to the bottom of this.” So he was absolutely amazing and fabulous. He solved the mystery.
First, I was hospitalized after doing one of the tests because it looked like blood clots on my lungs. But even then, they still were unsure and he pushed forward for another test. When he said, “You don’t have blood clots,” which to me was such a relief because I’d been injecting my stomach with blood thinners, and that was a horrendous experience. The first thing I said was, “Well, can I stop doing this?” “Yes,” he said. It was like, “Oh, okay. Well, it’s pulmonary hypertension. I don’t have to give myself needles.” At first, I was almost relieved, because I just heard the word hypertension and thought, “Well, lots of people have hypertension. It’s not a big deal.” But once the disease was explained in detail to me and I looked it up on Google, I did not feel as reassured or good about the diagnosis. I think that’s common for patients.
The journey is going okay. I was really lucky because I have excellent communication with my doctor and nurse at the pulmonary hypertension clinic. At one point, he had brought up that they were going to do a new trial, a stem cell study. I said, “Okay, sign me up.” He said, “Well, you have to meet all these criteria. It’s hard to get into.” I was really, really lucky, because I did meet every single criteria for the study. I was able to become a participant in that study. I really feel that the stem cells helped me, because I felt better and had more stamina since I had the trial.
Well, first of all, with pulmonary hypertension, it’s not a one-size-fits-all. It’s also your treatment can work and work, and then suddenly it stops working. That was my experience. I was on a drug called Revatio, and my pressures had been under control. Then suddenly, it was getting higher and higher and higher. Dr. Chandy had said, “I don’t really like the direction this is going.” I said, “Do whatever. I’m game, let’s take whatever treatment.” When he brought up and explained the stem cell study for me, I said, “That sounds perfect,” because you’re using your own body’s resources. They take your blood, then they take it to a lab, they alter it, they create the stem cells out of your own blood and then inject it back into you. It was a really good treatment, because it was nothing foreign. It was actually my own cells that were working to repair some of the damage from pulmonary hypertension.
In Ottawa, we have an incredible group of patients and caregivers. We do have a very active Ottawa support group. We do a lot of activities together. We talk regularly. Through the support group, people knew what I was going through. There was another member of the support group that was also eventually getting the stem cells. Then one person I just talked to in clinic one day, because the clinic days in Ottawa happen on Fridays. So usually if you’re in the waiting room, chances are you’re with somebody with pulmonary hypertension. We just struck up in a conversation one day.
My husband is my biggest support. He is just amazing. He’s been through this journey. My husband and I have known each other since we were in grade one and two. We’ve grown up together and he’s my biggest support. Aside from that, having people that understand what I’m going through and the fatigue. When you’re an atypical breather in a world of typical breathers, if your cardiac output is less than everybody else’s, or your heart’s working extra to do what other people just take for granted or do normally, it can be a little isolating or make you feel like you’re always catching up, you’re always behind the eight ball. It’s really nice in the support group because there are people in there that understand exactly what it’s like and have similar experiences that we can laugh about and joke about. It’s a real comfort level to be amongst, I’d joke and call them my people.
When I was originally diagnosed, they recommended that I stop working. But I said that it’s part of my personality to teach, and I wasn’t ready to stop. So for the past 14 years, I’m still going through adolescence and teaching my grade sevens and eights, but next year will be my last year. I’m ready to retire. I don’t shy away. If anybody asks me about my disease, I am right out there. I think education is power. I’ve met with strangers that I’ve been introduced to through families or friends who are having similar symptoms just to see if they fit into the box. I’m always going to advocate for this disease, and I hope that someday we do get a cure.
My name is Jo-Anne Mainwood, and I’m aware that I’m rare.
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