Jane Macleod - phaware® interview 428

Aug 22, 2023

Canadian pulmonary hypertension and scleroderma patient, Jane Macleod is a retired RN. She discusses reasons for her delayed diagnosis, the importance of pulmonary rehab, and the challenges of living a her new normal.

My name is Jane MacLeod. I'm 67 years old. I'm from Peterborough, Ontario. I was diagnosed with pulmonary hypertension caused by scleroderma in July, 2020. I was in for an angiogram, and that's how they found the pulmonary hypertension. They sent me right to intensive care for eight days and then transferred me to the Toronto General pulmonary floor for another seven or eight days. That was in July of 2020. I went by ambulance on my 65th birthday to Toronto. It was during COVID. I was not going out a lot, and if I walked, I was really, really short of breath. I'd just had an ankle replacement after two knee replacements. I was having lots of osteoarthritis issues. I was putting on weight, a lot of weight. I went to the hospital with shortness of breath. I had pneumonia at the time. They didn't hospitalize me. They just sent me home. I just kept getting worse, more short of breath.

I had an echocardiogram booked and I had that done. Then my next test was going to be an angiogram, and I waited for that. I shouldn't have, because I was getting worse and worse and worse at home, but I thought, "Well, I'm having an angiogram on Tuesday." So I waited. When the cardiologist said, no, I should have been in a long time ago. She said she was surprised I didn't die. It scared the life out of me. For one thing, I'll take a step back. I'm an RN and I should have known better, but we always put ourself last as a mother and as a nurse. I kept saying, "Well, I'll find out. I'll find out."

Not going out at all to anywhere was really, I just wasn't moving very much. My sister-in-law came and took me for a walk one day and I couldn't make it three houses down the street. She's a nurse too. We checked my oxygen levels and they were quite low. She thought I should have gone. Oh, I did go to the hospital the next day, but they didn't keep me. It was a lot of, not misdiagnosis, but delaying, I think because of the emergency situations at the hospital, because they kind of try and get rid of you as fast as they can.

I read a lot online. That's one of the reasons I really like PHA Canada’s Pulse newsletter. I get it once a month. I do a lot of research on the drugs. I've just only been on oxygen now for a year in March. I ended up back in the hospital in heart failure and they sent me home on oxygen. I was there for about two weeks because my saturation levels were quite low.

After that, I thought, "I can't let this happen to me like this.” So I started cardiac and pulmonary rehab. I was doing that a couple days a week and then retook the pulmonary rehab again on the advice of my pulmonary doctor in Toronto. Since then, I just go to the Y five days a week and exercise. I'm trying to be positive. We're newly retired, both my husband and I, and we don't want to live our retirement in fear, so we're trying to do as much as we can.

Last summer, we went to Nova Scotia for two weeks and this summer we're going to be sea for two weeks. We definitely need stuff like that to look forward to. We just bought a dingy that we're going to put a motor on, because there's lots of lakes around where we live because we love being on the water. Can't afford to live on it, but we love being on the water. We're trying to do as much as we can with the time we have because we don't know how much time.

I have two sons. My oldest son is 42. He has down syndrome, he lives with us. He's got cancer, so we're going through a lot of issues. We're trying to keep him healthy and happy, and he is doing very well. His cancer is not a fast-growing one, thank goodness. He will start chemo eventually, but right now he's fine. He does a lot. I have another son that's married and has one son and a stepdaughter now. So we have the two grandchildren. My son, David, the one that has down syndrome, is very supportive. He just cares about me too much and I have seven brothers and my family are my wonderful support. They look out for me very much so. My husband, especially since he's retired, he's just my caregiver.

I have not met anybody with scleroderma or pulmonary hypertension ever. It would be nice to hear other stories and find out if what I'm feeling is real and the fear I feel all the time about am I going to live? I like to hear if that's common. I worry. I worry about it constantly actually. It will be nice to have some other input and find out new treatments if there's any, and how best I could make mine work better. That's what I'm looking for.

When I was diagnosed, I was in shock. Like I said, not a lot of people know about it. I was in a teaching hospital, so I had a lot of doctors and staff coming at me, so that was kind of scary. It never really leaves my mind that I have this, and I don't know if that's being selfish or I don't know. Even when we're driving, we go for drives and that's my sense of relaxation because we live in a nice quiet area. I like to go for drives, so it takes my mind off my fingers that sting all the time, or I've got all these post broken bones that stick out and lots of issues like that.

I feel like I'm better with it because going to the Y, I'm trying to be positive. People look at me all the time because I'm wearing oxygen, doing an elliptical machine. I really don't care what people think. I am feeling more positive about it. I'm hoping I can live as long as I can with it. Would I be a candidate for a lung transplant? I don't know. One of my doctors said it's not off the table, but you have to be a specific BMI for that, and I'm really trying. I've lost 70 pounds, so I'm working at it. It's not easy. The challenge of eating, no salt, no sugar, limited fluid intake. That's the challenge. That's a real challenge every day. Every single day. I have to weigh myself every day. If my weight goes up a bit, it's fluid. I have to take extra water pills. So yeah, it's a daily work in progress. I would say.

My name is Jane McLeod and I'm aware that I'm rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com @phacanada