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I'm Aware That I'm Rare: the phaware® podcast

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Sonya Collins - phaware® interview 209

Nov 23, 2018

Diagnosed with IPAH almost 16 years ago, Canadian Sonya Collins discusses spending about four years questioning her shortness of breath (SOB) and severe fluid retention. Sonya details why she became a PHA Canada Ambassador and how her short and long term goals have shifted over the years thanks to her PH therapies.

My name is Sonya Collins, and I'm from Paradise Newfoundland, Canada. I am a PH patient. I have been diagnosed for almost 16 years and have recently become an ambassador for PHA Canada, where I'm here to fight for those who can't fight for themselves.

I'm pretty sure that I had PH at least four years prior to being diagnosed. Upon diagnosis, when everything was put in my face of how these are the symptoms. This is what was going on. I was textbook. It started with fluid buildup, and I was pregnant. But, when you're pregnant you have fluid retention. So, then I guess after I had my child, my first, I started to feel a little bit better.

Then I got pregnant again, and on my second child the breathing was much more difficult. Pregnancy induced asthma is what they call that. But, that didn't help. Then after I had my second child, I went to my GP and she said, “you know you're tired. You're not well and everything. You have two babies.” So, it was passed off as just being a tired new mom. My youngest daughter was 20 months old when I got diagnosed.

I was at a conference. I used to be a travel agent and teach travel and tourism, and I saw that all these people were walking past me. People who were much older and maybe more unhealthy than I was. And, I thought this is not right. I'm stopping and looking at pictures to catch my breath so no one sees that I'm out of breath. And, I'm embarrassed, and of course I had gained weight. But a lot of that weight was fluid. So, then it was like, you know what? There's really something wrong here.

That's when I went to my GP, and I was like, “I'm coughing even just talking in a normal conversation, just brushing my teeth, I'm out of breath. I'm hanging over the sink.” She said, “No. This is not normal.” After a month, I got into emergency testing, so an MRI, CT scan and they literally walked me from the scan to the emergency. Through three days of testing told me that I was Stage 4A, and my pressures were around 120 and that I needed a double lung and a heart transplant, but I was too unwell to survive the travel, the transplant, everything. So, that I had about six to twelve months to live.

I would pray, just let me see my 20 month old turn two years old. And then I would pray, just let me see my little four year old go to school, first day of kindergarten. So, those were my short term and my long term goals. Then after about a year, as I started to feel better, I realized, no. They were the wrong goals. My short term goal is to see my children graduate from high school, and my long term goal is be a grandparent. So, my short term goal is about to come true in June when my youngest graduates from high school. And now I have to change my goals again. So, now my new short term goal is to be a grandmother, and my long term goal is to be a great-grandmother.

My cardiologist actually wrote a letter to the government saying that I needed financial assistance to care for children in daycare because I was too unwell to take care of them. So, they did do that, and I would sit at home all day long two minutes away from where my children were in daycare and feel guilty, because I had sent them to daycare and here I am just sitting down all day long.

But, then they would come home at suppertime, dinnertime, and I would think, wow. That's why they're there, because just getting them dinner is making me tired and out of breath and now I have to bathe them and I have to get them ready for bed. So, that was the reason why. But, I still went through a lot of guilt about that. When I would see kids walking down the street, maybe the parents were pulling the children in their slides. I would look out and think, I wish I could do that. I can't do that, and I'd feel guilt.

My oldest daughter just went to University, and she wrote me a letter before she left. She said, I looked as I couldn't do those things. And that my mom was sick in bed. But, I thought okay, I'm sick in bed, and I can't be out doing those things with my children. She looked at is as I had snuggle time with my mom. So, I guess that you can take a positive out of everything. I hope with my children that if I taught them anything is to be positive and I see the world so much better now. And, that there's a good reason for everything, and not that everything happens for a reason. Because I don't really like that saying. But, I think that you can take something good out of everything that happens.

When I started oral therapy, a few days after I was diagnosed in 2003. They said, this is a new drug that was just approved in Newfoundland, and there's no long term information on it [or] data on it. So, we just have to hope for the best when they give this to you now. Fortunately, I did get the best out of it, and that lasted for me for about eight years. Then they had to add a secondary. So, dual therapy. That didn't do so great with me. So, then it was decided just over four years ago that I needed IV therapy.

So, I went on the IV therapy. Then a couple years ago, about two years ago, I heard about a new oral therapy that was similar to the IV, just a different deliverance. And, I lobbied to try and get that for myself. We did, and I just spent a couple weeks in ICU about a month ago. And, I'm now IV free, pump free, and I'm just taking oral therapy. So far I'm doing great.

I guess initially it started with me wanting to go on the oral therapy. I started to fight for it. Then it became more about, okay this is great. I'm fighting for me, but there has to be so many other people out there who don't know how to fight or don't even know that they can fight. Because I was diagnosed for so long, and I was diagnosed before PHA Canada was around or social media. I was used dealing with this disease on my own and battling for myself.

So, then I realized that I don't need to be an Ambassador or be a part of PHA Canada for me. I needed to be a PH ambassador for everybody else. Right now I guess my short term goals are to reach out to people maybe even like me who don't thing that they need us. Whether that's just because of denial or they just don't think that they need us, to reach out to them and show them how we can be of support to them, if not necessarily a patient, but a caregiver.

In my opinion, the caregivers are the heroes, because I think it's harder to watch someone else you love go through something than it is to deal with it yourself. So, maybe it's just going to be for the caregivers over patient even.

My long term goal is that nobody should have to fight for their drugs. Nobody should have to struggle financially. That would be probably my long term goal.

Always have hope, because without hope you have nothing. Stay positive, and reach out to people. There's more people out there. There's more good out there than there's bad, and there's more people out there to help than you realize. Even though friends and family don't exactly understand what you're going through, we understand what you're going through or can empathize with what you're going through.

My name is Sonya Collins, and I'm aware that I am RARE.

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