I’m Aware That I’m Rare: Carol Doyle Ploughman (430)

the phaware® interview

15 years ago, after the birth of her 2nd child, Canadian pulmonary hypertension patient, Carol Doyle Ploughman was told she had only two years to live. Now, a decade and a half later, on her birthday, Carol discusses how she has maintains a healthy and active lifestyle and the importance of clinical trials for PH patients.

My name is Carol Doyle Plowman. I live in Ontario, Canada and I was diagnosed about 15 years ago with pulmonary hypertension at Toronto General Hospital. I got diagnosed after the birth of my second child, but symptoms arose right after the first pregnancy. It wasn’t diagnosed. What happened was I didn’t do too well with the second pregnancy. I went into delivery early. I had my second child six weeks early. About a week after my second child was born, I went into heart failure. That’s when they discovered I had pulmonary hypertension.

It took several weeks after that just to confirm the diagnosis, because when I first went to a walk-in, they said that I should go to the ER. When I went to the ER, that doctor actually told me that my swelling was the natural part of motherhood and I should just go home and deal with it. I remember leaving there in tears and I said to my husband, “Something’s not right. I don’t care that he’s a doctor. I need to figure out what’s going on.” Because at that point, I was barely walking. I had pins and needles in my legs. They were swollen to the point where I could barely walk because of the pain.

My family doctor referred me to a local internist. I was in his office five minutes when he had me running a bunch of tests. For a whole week, he ran tests and then sent me to a cardiologist who told me I had two years to live if I didn’t get a lung transplant. The community we have is so very important because back then, there was so much misdiagnosis, or even if you got the correct diagnosis, the information that you got may not always have been accurate. So the fact that it’s 15 years later and I don’t have a lung transplant, while I am on triple medication to control the disease, I’m in a far better place than I imagine myself to be. You can only imagine how it feels. I had a four-year-old, a three-week-old, and I’m told that I’m not going to live more than two years unless I got a lung transplant.

At that point, a cardiologist referred me to Dr. Granton at Toronto General. A week later when my husband and I went down there, we had all these questions about lung transplants and he’s like, “Whoa, whoa, whoa.” He’s like, “No, no, no, that’s not where we’re going. We’re going to start you on medication.” We kind of giggled because we thought lung transplant or nothing. Dr. Graham’s like, “It’s not funny.” I’m like, “We’re giggling because it’s a relief.” They wanted to put me in the hospital because I had so much fluid backed up, but because I had the young baby at home. I didn’t want that. So I said I would do whatever it took, just let me do it at home. I was on a heavy dose of diuretics. The first night, I lost seven pounds and within the first week I lost 36 pounds of fluid.

When I think back about 36 pounds, it’s a huge amount of weight to lose in one week, but it was just that’s how much fluid my body was retaining at that point. Dr. Granton and his team basically said, my second child is basically like an angel, because if they didn’t come when they did, we may not have detected it and I could have died. At that point I was just so thankful, but I was also kind of angry because being told wrong information, and I felt that the cardiologist and the neurologist I saw before that … because during those four years before the second pregnancy, I had seen a neurologist because they told me I had syncope and I needed to stop drinking coffee. There’s just all this different things that they told me at that point. All the symptoms had another answer. It wasn’t until I went into heart failure during the pregnancy that everything got figured out.

I did write an article about Dr. Browning who I felt saved my life, because he knew instantly what path to go up with the testing and if it wasn’t for him, I don’t know if I’d be here. That actually led to the Ontario Lung Association seeing the publication that I wrote about Dr. Browning. They asked me to do an interview for the doctors for Ontario, which I did because at that point I wanted to do whatever I could so the next person wouldn’t have to go through any struggles of getting diagnosed. Not only did they run it in a commercial where I was in a commercial with other people for different reasons of dealing with the Ontario doctors, they actually posted a poster of me down around Toronto General Hospital on the subways and stuff. So at the end when they went into their next phase of doing a different interview, they actually sent me the poster, which I thought was pretty cool.

There was one point where my husband was away out of business and he was in a bar with clients, and he looked up because he is like, I hear my wife. The customer looked at him and he is like, “What do you mean?” He looked up and there I was on the TV. I like to think that that started helping people. So the first person I reached out to after Googling about pulmonary hypertension was a lady by the name of Loretta Chu. She had at that point just started a support group here in Toronto. She created the Toronto Chapter for Pulmonary Hypertension, back 15, 16 years ago. My first introduction to anyone else with the same disease was when I went to one of the support groups where Loretta was running it. It was quite the eyeopener. It’s not a one size fits all disease, because while my symptoms are fluid retention and I have to take diuretics and watch my sodium. Not everyone has the same restrictions, or not everyone can take the same medications.

I started out with Revatio for the first year. They added Tracleer the year after that, and I was on Tracleer just until two months ago, because they added a third. We tried Adcirca. Adcirca did not work for me, I couldn’t even get out of bed. So they switched Adcirca to Uptravi, which seems to be good for me, but they just recently, because of some symptoms that I’ve been having, switched it out to Ambrisentan. I’ve noticed a difference. Like I go walking with my husband, they usually have to push me up a hill, or I have to stop halfway up. I can’t get to the top, or if I get to the top, I have to stop for a couple of minutes to catch my breath. Since they replace Tracleer with the Ambrisentan, I can get up to the top the hill without stopping. I don’t stop even once I reach there. I still get winded and I can still feel it, but I don’t have to stop to get it back to a normal beat.

The thing I realized it’s always like baby steps. It’s like I know I’m never going to ride a bike again. I’ve tried. I try once a year every year to test myself. The last time I did it, I passed out on it, on the sidewalk in front of my young child. It really scared them, so they asked me not to try it again, so I haven’t since. But I try to find the things that I can do that will make me happier, different things I could do with my kids. I can’t coach soccer, but I would always be on the sidelines watching. It’s just about finding balance. I know a lot of people that have illnesses. It’s like a lot of people say, I don’t look sick, so I’m not sick, so they forget that you’re going to do something, I can’t do it. If you’re going to go anywhere hiking, if there’s big hills, I can’t go, or I can go, but I can’t climb that hill. It does impact it. It has changed friendships, but the important people are still there. My kids don’t know any different. I’m very lucky that I have really good support system.

My husband picked up a lot of slack with the kids when they were younger, when they wanted to do biking and stuff like that. I try to be very optimistic, because as long as I wake up and I’m breathing, then there’s something to live for. Maybe I say that because I am stable and I have been for a little while. I don’t know if I think the same way, if I wasn’t as stable as I am. I also make sure I follow all my restrictions and do whatever the doctor tells me I need to do.

My opinion is it’s changed friendships because of the fact that I do have some limitations. So fluid restrictions, for example… I had some friends that like to drink, and maybe drink a little bit more than I can. For me to go out and have a drink or two, that means I’m going most of the day without any fluid or little fluid, and that fluid, of course, is always usually water or soda, water. Then, of course, alcohol is dehydrating, so it doesn’t really play well with the fact that I have to take diuretics because of fluid retention. Then the next day, you tend to be thirsty. It’s a hard thing to replenish. So I find some of those friends have gone by the wayside because I’m not able to go out and party like I’m 20 anymore. And you know what, I don’t even know if I’d really want to. But again, some others would be ladies that I worked out with or did boot camps with. So different things that would make the friendships were broken because of the illness. So things changed, but there’s also some friendships that I gain new friendships, or some friendships that actually made it through. I just believe that they were just true friends and they would be there regardless.

I’m actually at the point where I’m very lucky there’s a lady in town who does classes and I go to twice a week and I do some interval training, which I got Dr. Granton to approve. I go at my own pace. A lot of it is chair. I know my sister-in-law does chair yoga for some people. We do stuff where we might do low weights sitting in a chair and not a lot of movements over my head. You just work it into what you’re able to do instead of looking at what you cannot do.

For the first month, I detached from the baby because I didn’t think I was going to be there. I didn’t want the baby to get attached to me. My mother-in-law, my father-in-law pretty much, because my husband travels for work, they came to stay with me during the week and then my husband would be here on weekends. There is a bad side to the disease for sure. I just don’t like to dwell on that part. I went into a bit of a dark place. I felt like I couldn’t do anything, so I didn’t. I didn’t even try at the beginning. And it took probably a good two years. I don’t know how I got the, I call it your wake-up, your aha moment, but I thought, I don’t want this, I want to be able to do stuff.

So I reached out to a local lady because I saw a commercial for TRX, and I’m like, “Could I do that?” She’s like, “Under the circumstances for your condition,” she’s like, “No.” She’s like, “But do you ever want to try personal training?” I’m like, “I never even thought of it.” And I did. I contacted the doctor and I’m like, “am I able to try this?” Because right now I spent almost three years where I was doing nothing. I couldn’t even pick something up in the grocery store from a lower shelf without holding onto a shelf to get back up, because you lose your muscle tone. You’re not using your muscles and you’re just sitting around all the time.

I think that was my aha moment, because when I started doing the personal trainer, I still remember the first squat I did was with a ball against a wall and I did two. I could probably do stand up and do 40 squats right now. So it’s all a matter of, I try not to think any more about what I can’t do. I tell my kids this all the time, you think about what you can do or what you want to do, and you try it. If you try it and you can’t do it, that’s great. I mean, it’s not great, but at least you tried. But if you’re not even trying, then how do you know? That goes for anything in life, not just people with an illness. How do you know what you’re going to like or dislike, whether it be tasting different food, or travel, or any of it really. So I try to always tell them, look at the brighter side, be more optimistic and try different things.

At the beginning when the kids were younger, I did any type of trials. I remember the first trial I did, and I actually had something posted in the PH magazine about it. I did this trial and you don’t know if you’re on placebo or not. I’d still get the same feelings. You’d still get the fatigue, but you could do a little further. So I could walk a little further. I could last a little longer doing something. They canceled the study because they weren’t getting enough positive feedback from, I guess, the people that were involved. I was devastated. Would I let it stop me from doing it again, no, but you need to be aware if you ever agree to do a study or anything like that, that there’s pros and cons to it as well. I was not mentally prepared for them stopping it. They never tell you whether you’re on the placebo or not. But I said to my husband, I’m like, “I know I wasn’t. There’s no way I could have done that.” Because when the drug went away and I’m back on my normal meds, I went back to the same where I was before the study.

I remember when I had my appointment with my doctor and I’m like, “You gave me candy and you took it away and I want my candy back.” That’s when they decided at that point, that’s when they introduced me to the third medication, because it’s like you showed me a little more, that I could move a little more, and I wanted it back. I felt so good at that point. I didn’t want to not feel good anymore. So I’m like, “I want candy back.” So they’re like, “Okay, let’s check it out.”

I remember going in and doing a study. They were going to take a piece of muscle out of your leg. And I’m like, “Sure.” Because Dr. Granton knows if there’s a study that I qualify for, he just calls me and is like, “Are you interested?” And I’m like, “Yep.” I still, to this day do that, because there’s just a lot of factors that you just don’t know. If they come out with new medication for it or other options for other things, then why not try? I don’t lose anything from doing the volunteering, right? I have a little scar from them taking a chunk of muscle out of my leg. They actually had to do it twice, because the first time they didn’t take a big enough piece. They’re like, “Can we do it again?” I’m like, “Don’t even ask me. Just do it and do it quick.” I liked being able to do that. I haven’t been asked to do anything in a study basis for a little while now, and I do miss it, because it always made me feel close to the community by doing these things.

I think the studies are important because we all want the same thing. Anyone with PH, we all want the same thing, we want a cure. So these studies help, not only with new medications, but hopefully the end result is figuring out enough from these studies that they maybe come up with this cure, because I hope to be alive for that day. Because right now, the only option we have is lung transplant, and that’s not a cure because that comes with this whole gambit of things that you need to do, and medications you need to take at that point. So it’d be nice to think that there’s going to be a future with a cure. I think it’s doable. Because we’re not all one and the same as far as symptoms and everything else, I think they need a huge array of people to do the volunteering so that they can collect as much information as they can.

My name is Carol Doyle Plowman, and I’m aware that I am rare.

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