Carolyn Mathur - phaware® interview 587

Out of Breath, Not Out of Dreams: One Woman’s PH Journey Across 79 Countries

Carolyn Mathur was told she had only hours to live. Then days. Then months. Instead of waiting to die, she chose to live—loudly, joyfully, and without apology. Nearly three decades later, she’s still here, traveling the world, and proving that hope can outlive even the bleakest diagnosis.

My name is Carolyn Mathur. I'm 63. I live in Port Perry, Ontario right now. Originally, born in Nova Scotia and then, Montreal and then Toronto, and now just live in Port Perry by the lake. And it’s just a lovely view there.

I am involved with pulmonary hypertension because after my second child in 1996, I started having shortness of breath in September of '96. That just led me to a doctor. One thing led to another, originally I was diagnosed with pulmonary embolism. Then, I just kept on feeling more short of breath. Being an advocate for yourself, for your own health, I kept on complaining about my shortness of breath getting worse every day, every day. That led me to a lung specialist, that led me to a blood specialist. Then, still complaining again, led me to the pulmonologist in Sunnybrook Hospital. That's when I was diagnosed, in April of '97 through a right heart catheterization.

I was very blessed to be told that I was only going to survive a few hours. At that time, in 1997, the usual was you were given six months to two years to live, but I was very lucky to be told that I was only going to be surviving for a few hours. Because I was only going to be surviving as few hours, there's nothing you can do with that. You can't cry, you can't be sad, you can't do anything. I had a three-year-old and a one-year-old. There's nothing that can be done. Can't see my children, can't see my family. My husband and I just sat and just thought, "What are we to do?"

I signed the papers that said I understand that I could pass away immediately with the drugs that they were going to be doing for me. The drugs that they tried worked immediately and my pressures came down. At that time, my pressures were 104, which I know aren't high at this time. In 1997, I was the worst case that they've ever seen. Now, 29 years later, I'm one of the best cases that you can see.

So, I traveled the world. I was told I can never travel, never exercise, et cetera, et cetera. After I was given the diagnosis of only living basically till the next morning, and I did survive, I was now given a week to live. I was elated with that information of being told I was going to live for a week. How exciting and glorious is that now I can see my family and my friends to say goodbye. So, I'm in ICU for a week. Then, after that week, they told me to go home and basically die at home.

Now, they gave me a month to live. A month to live, my gosh, how amazing is that. I've got a month to live, so I went home and I had a month to be with my two children and my husband. How glorious. Then, after I lived a month, they gave me six months to live.

Six months, let's break the bank and let's travel. We took all our money and we went down to Florida and stayed at the resorts and enjoyed and went with our kids and just had the best time. After six months, they gave me two years to live. Two years, now what part of the world can we see? So, let's keep on going, let's keep on traveling. So, they gave me two years to live. After two years, they gave me five years to live. Five years, wow, so five years to live! So much more of the world to see. That's what we kept on doing, just seeing the world. Then, after five years, they gave up and they said, "We're not telling you anymore.” 29 years now, 79 countries and keep on going! I'm never going to stop.

I'm happy with what I can do. I'm not sad about what I can't do. Doesn't bother me at all. I still zip-line. I still climb the mountains, just out of breath. Getting my socks on, I'm out of breath. Taking a shower, washing my hair and I'm out of breath. It doesn't bother me at all. I'm just so thankful of the wonderful life that I have been given. My wonderful husband, my two amazing children, my best of friends, Allison, Rose, all my girlfriends, Corey, Eileen, my amazing support team, my amazing family.

In 1997, there was nowhere to go in Canada for a support group. I went to the Lung Association and they had never heard of pulmonary hypertension, so they sent me to the Heart Association. I went to the Heart Association and they said, "Sorry, we've never heard of pulmonary hypertension. You can try the Lung Association."

So, I started the first Canadian support group in Toronto at Toronto General with Dr. Granton and Mary McCarthy. At that time, we had to have a social worker with us. My sister, Kelly, made our pamphlets for us with my picture on the front and Grace Wickenhausen, who passed away a few years ago, and Carmen, that passed away maybe 20-some odd years ago, and another lovely lady whose name I'm sorry I cannot remember, her photo was also in this pamphlet.

It told all the information of how to get a hold of us and what we were about. Unfortunately, all those people have passed away and the group did fold many, many years ago, because just nobody was coming out. All the pamphlets that we made, we would hide in the magazines in the waiting room, because at that time it was all privacy. We didn't have the internet, we didn't have Facebook and everything else. So, we all had to hide my pamphlet and my phone number and my name in to let patients know that they can get a hold of me at any time. But I got caught and I was told that I could not do this and it was all privacy.

I was a naughty girl and I still kept on doing it, telling people that they can get a hold of me. But nope, we could not do that. So, unfortunately, that all had to stop as well. Then, I just basically kind of gave up on that part of the section. I did do an awful lot of fundraising for PH. I did Quiz Nights once a month. I did Spaghetti Nights and a whole lot of stuff way back in 1997.

A few years ago I was on oxygen and wasn't doing as well. I did think maybe my time was coming to an end, but my daughter lives in England and I didn't tell my daughter. My daughter and I are best of friends. We are so, so close. So yes, if I was to tell anybody, it would be her. I didn't tell her. I told Allison because Allison saw. I told Allison's daughter because she saw. Allison's daughter, who's approximately same age as mine, said, "Carolyn, if you were my mom, I'd want to know. Yes, you should tell Jacqueline." I'm just thinking like, "Ah, I just don't want my daughter to be worried." She's so far away and what have you. So, she can't do anything. So those are the kind of things that I think I will always be not telling people, because I don't want people to worry. There's nothing anybody can do. I know for myself, I doubt very much I'll be changing.

Travel for me is my world, it always has been since I was a child. My first flight, I was six months old. I've always traveled, taken my children all over the world. I was Girl Guide leader and I've taken my girls all over the world, to China and anywhere I could fundraise to go to get my girls to China for free or to Europe for free and what have you. Travel's just always been in my blood and I've got five trips right now booked right up until 2027.

When I was told originally that I could not fly, but then after I was living six months and we took a short flight to Florida, it was totally fine. There was no difference whatsoever. So we continued on, we flew and it was great. Then, when we did do our long flight from Chicago to Beijing, when we went over the magnetic pole, one of my other Girl Guide leaders, she passed out and she was on the floor. Because I was the main leader of this group, the stewards came to me and said, "We've got one of your leaders that she's passed out on the floor." I'm thinking, "Oh my gosh, that's crazy. I'm the one that's not supposed to fly and she's totally healthy and she's the one that's passed out." Anyway, we get over to Beijing and now we're leaving from Hong Kong back to Chicago and yet again, she passes out again over Mongolia. But no, I have had no issues and I fly several times a year and I've had no issues whatsoever even with the long-haul flights.

I know live for today is one of those expressions, but truly that's what I do. Today, I'm living for today and I'm getting this foot forward today and my next foot will follow. If my right foot's going to go, my left foot's going to come after it. You just keep on going. Mindset as well, just always have happy thoughts. Right when your mind starts to just think bad thoughts, just twist it around. If you put a smile on your face, even when you don't feel like smiling, your feelings will catch up with you. If you send yourself that way to your happy thoughts, you will catch up with yourself and then you will start. Even if you just start that smile and it's like, "I'm not going to smile. I'm not happy." Just do it anyway. Just frigging do it. You put a smile on your face and then you will start.

One day, if you have had a bad day and you do want to cry for myself, I know people say, "No, cry and let it out," I am kind of the opposite in that way. I'm thinking, "I'm not going to cry. There are so much other people in this world that have something to cry about. I've got nothing to cry about. I've got all these wonderful things in my life. What do I have to cry about? Absolutely nothing." With these terrible wars that are going on in our world and what have you and the different things that are happening just politically in our world, I have absolutely nothing to cry about. I'm just living today.

When my husband will say, "Oh, what time are you going to be home," I just say, "I'm going to be home before midnight," because I don't know what time I'm going to be home. I'm going to be out today and I'm going to go here and I'm going to do this and I'm going to be doing that. I don't know. If I'm home before midnight, it's a good day.

I just say just to keep positive thoughts and just right when you start going down the rabbit hole of negative thoughts, you got to bite it in the butt before it catches you. So you just have to put a smile on your face.

I'm Carolyn Mathur and I'm aware that I'm rare.

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