I’m Aware That I’m Rare: Colleen Carroll (429)

the phaware® interview

Canadian pulmonary hypertension patient, Colleen Carroll was wrongly diagnosed with severe anxiety and asthma before she ever heard the words “pulmonary hypertension.” Now she faces each day with a positive attitude, a good diet, exercise regimen, and the power of her faith.

I’m Colleen Carroll. I’m from Canada. I was diagnosed with pulmonary hypertension in 2018. My doctors are from Toronto, Ontario. That’s where I go for all my treatments. They’re great doctors. They take good care of me. I was diagnosed five years ago. I’m on two medications right now. I don’t know if they’re going to add a third drug because my pressures are a little bit high. But yes, I’m taking two drugs right now. I’m doing great. I’m basically a very fit woman. I believe in exercise and diet and really watching what you eat. I believe stress is also a big factor with pulmonary hypertension. I just lost my mother recently, and I can tell that when you’re under a lot of stress like that, it does affect your body.

I knew for a long time that there was something wrong with me. Basically, I’m pretty fit. I always ate healthy. I was always very slim. I’m 5'4" and 120 pounds. People couldn’t believe it. I’ve never smoked, never drank, and there was never drugs. This went on for years. Kept telling everybody, “There’s something seriously wrong with me.” I went to doctors. The doctors kept diagnosing me with severe anxiety. So I said, “Okay, so what do I do about that?” They said, “Well, join the gym.”

So that’s what I did. I joined the gym, and I coughed all the time. I used to cough. I always had this constant cough. I have a sister that’s a nurse, and she kept saying, “Why do you cough all the time? There’s something not right.” I said, “Well, I’m always coughing.” So then I thought maybe I had asthma, so they checked me for that. I didn’t have asthma. So anyways, that’s what they diagnosed me with, with severe anxiety.

From then on, I basically tried everything to get out of this, and I thought, “If this is what anxiety is, it’s terrible.” I literally felt like I was dying. I kept telling my husband, “I think I’m going to die. I feel like I’m going to die.” I have two children and grandkids. They just saw me just going down really quickly. I couldn’t even cross the street. But it’s hard to understand when you have PH that you can’t breathe. You don’t know really what’s wrong with you. If you have the illness, they would understand.

I finally found out, after seeing numerous doctors, they finally, said, “Okay, there is something seriously wrong with you. You know your body.” So they admitted me in North Bay. One of the doctors there asked me if I ever heard of pulmonary hypertension. I said, “Yes, my sister’s a nurse, and she told me you don’t want that.” He said, “Well we think that’s what you have. You need to go to a city, a big, big city. We don’t treat that here.”

They sent me right away to Toronto. I was there in three days. I was basically hooked up to oxygen by then for two months. The doctors in Toronto put me on meds. I was off the oxygen within three days. They called me this miracle girl. They couldn’t believe the progress that I had did. They tested me also. They didn’t understand, where did I get this? They asked me, was I a smoker, all those things. No, no, no. So they diagnosed me, basically, with idiopathic pulmonary hypertension.

From then on, I followed their steps. I joined a study. They put me in a study, a clinical study, which was the selexipag study. Of course, after a year, I found out that I was taking the placebo pill. My doctor just did a right heart catheterization on me. She found that my heart is functioning very well. She said the ventricles are awesome. She said that the only thing is, “Your pressures are still a bit high.” So I believe that they’re going to add the selexipag. I’m just waiting on the doctor to call me back.

Pulmonary hypertension is something that I believe, to me, doesn’t give you a death notice. I’m a believer in God, and I believe that I have this for a reason and to help others understand it and what it is. Pulmonary hypertension to me is just something that I have to deal with each and every day. Actually, I feel a lot better than I did when I was first diagnosed. I’m so thankful for that. If you ever find out that you have pulmonary hypertension, not to worry, not to be scared of it and not to read. That’s one of the most important things. Do not read, because I started reading and it scared the crap out of me because I thought, “Oh my gosh, you’re going to die within seven years.” This is my fifth year, and I’m actually doing really well. Like I said, diet, exercise, watch your stress levels, all those things, is a big factor, I believe, in pulmonary hypertension.

In the beginning when I didn’t know exactly what was going on with me, I started having fainting spells. I started feeling dizzy. I never actually lost consciousness, but I went to the doctor numerous amounts of times. They tried all kinds of testing on me, everything you could possibly imagine, X-rays, brain scans, you name it, and they could not find anything wrong with me. All this was going on for years.

I am a believer in the Lord, and my husband’s a pastor. That’s what pulled me through this. In the scriptures it says that, “I will never leave you nor forsake you.” I believe that I have this for a reason, either to encourage people, either to… I don’t know. Maybe He has a miracle for me. I believe in miracles. That’s what kept me going.

In the beginning, I literally thought this was my death sentence then. I was falling into depression and not doing well. What keeps me going is I garden, I exercise, I go to church every Sunday, but I just live each and every day to the best I can and not to get discouraged because there is hope. There is great doctors out there who know a lot about this that we don’t and just to keep pressing on, not to give up.

Each and every day when I do get up and I look in the mirror, the first thing I do is I take a shower. I always find that I feel so good when I take a shower. I get up and I say, “This is a new day, Lord. What do you have for me to do?” I try not to think about my illness itself. I try not to talk about it a lot with my family and children. They know what I have and they know all about it. I just keep going, like I said. I garden, I do all those kinds of things just to keep me mentally stable, because you got to be careful of the mental state, also.

I don’t want to pity myself, “Oh, poor me that I have this illness.” I don’t want people to pity me. I want to be a survivor. I want to people to say, “Wow, like look at this woman. If she can do this, I can do this.” I used to watch Chloe Temtchine a lot. I don’t know if you guys are familiar with her, but Chloe Temtchine also had pulmonary hypertension for numerous years. I used to watch her every single day, everything she’d go through, everything she’d do, everything she’d say. That also pulled me through. I have to say that Chloe Temtchine was a very important part of my life going through this. Shad a lung transplant, and I see her doing great and wonderfully. We all have our own story. I believe that just keep pressing on. Don’t give up. That’s the most important thing.

I’m Colleen Carroll, and I’m aware that I am rare.

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