Tanya Stinson - phaware® interview 499

Dec 17, 2024

Tanya Stinson shares her journey of being diagnosed with pulmonary hypertension (PH) after persistent symptoms and misdiagnoses. Her struggle highlights the difficulty of finding the right diagnosis and the emotional toll of living with a rare, chronic disease. Tanya’s experience underlines the fear, mental challenges, and hope intertwined in navigating PH, inspiring others to seek support and find solace in community, showing that even in isolation, they are not alone.

My name is Tanya Stinson. I’m from a really small town in Manitoba called Saint Eustache Manitoba. It’s about half an hour away from Winnipeg. I was diagnosed about a year and a half ago with pulmonary hypertension. My family doctor thought for sure that it was a heart condition. I kept going to her and telling her, “I can’t breathe, I can’t breathe, I can’t breathe.” She kept saying, “Well, we’ll get you in to see the heart doctor.” My husband even came with me to a couple of appointments and he’s said, “It’s not her heart. She can’t breathe. It’s her lungs.” The doctor was like, “No, no, no, no, it’s her heart.” Being a woman of larger size, it’s automatically assumed it’s my heart, and I said, “It’s not my heart. It’s the fact that I cannot breathe. I can’t go from my bed to the bathroom, which is like five steps away, without having to stop halfway to catch my breath.” She said, “Well, let’s just wait. We’ll get you to the heart doctor.” 
 
I saw the heart doctor. Then, that weekend I couldn’t breathe hardly at all. I phoned her office on Monday morning and I said, “Can you please, please, please get me in? I need to see you. I cannot breathe.” So I went in. She put a pulse oximeter thing on my finger. She took it off my finger and she cleaned it and then she put it on her finger and then she put it back on my finger. She said, “I think this thing might be broken because you’re registering 71.” I said, “Well, see, I told you I can’t breathe.” She said, “Okay, well you need to go to the emergency room.”
 
In my province, which is Manitoba, we have urgent care, and then we have three hospitals in Winnipeg. She said, “Go to what we call an urgent care, which is Victoria Hospital.” But she thought she was sending me to a regular hospital and that wasn’t the case. I got to this urgent care and they did my oxygen. Then, I had to wait for a special ambulance to take me to St. Boniface Hospital in Winnipeg. That’s where I met my doctor. The way I look at it is he knew the second he saw me almost what it was. But he said, “We have to do tests, and it’s already like 10 o’clock at night. There’s no way we’re going to run tests today, so we’re going to admit you.” I had the right heart catheterization. He came in the room. The look on his face probably scared me the most, because it was a look of very much of concern and almost sadness in a way.
 
When I saw his face, I’m said, “Am I going to die?” That was the first thing that ran through my head. When he told me it was pulmonary hypertension, I said, “Oh, okay, so I’ll take a couple of pills and I’ll be fine.” He started me on medication right away. Within the first week, I already felt better. I thought, okay, the longer I’m on these meds, I’ll be able to breathe again. Then, I went home and I had a week off of work before I had to go back to work. It’s almost like I plateaued. My breathing wasn’t getting better and I kept thinking, I thought these pills would help. I thought they would cure me. Even though he told me it’s not curable right now, I felt at least I would be able to breathe.
 
Now knowing, a year and a half in, that this is the best it’s going to get is scary in a way, but at least I’m not where I was a year and a half ago before diagnosis when I couldn’t even take five steps to go to the bathroom. Now, I can work without having to worry about anyone looking outside the window going, why is she stopped in the middle of the road walking into work kind of thing. I don’t have to worry about that. I can at least get myself into work and stop and take a break and then continue on. I don’t have to worry about people looking at me and saying, “Well, why is she just standing there?” I don’t have to pull out my cell phone pretending I’m taking a phone call in a parking lot so that I don’t look like an idiot stopping in the middle of the parking lot to just catch my breath.
 
My doctor, because he works at the pulmonary clinic, he told me, don’t Google anything because it’s the wrong thing to do, but someone tells you not to Google something, you’re going to Google it. So, that was a bit scary. But then I found the PHA Canada website and that helped a lot. But in our province, there has to be more of us. We got more than a million people, so if it’s one in a hundred thousand, you figure there have to be other people, but you still feel really lonely because you don’t know of anyone. 
 
I was able through PHA Canada to find a PHA buddy and she has been a godsend for me. She’s answered so many questions and has been there to support me through the really difficult, hard days, whether it’s in relation to work, my breathing, just anything. If it wasn’t for PHA Canada, I don’t know where I would be as well as without my doctor.
 
I sometimes will say to my husband, “If it wasn’t for my doctor, Dr. Christensen, I’d probably be dead,” because it was him who figured it out. It wasn’t my family doctor. It was my family doctor who said, “It’s your heart, it’s your heart, it’s your heart.” He was the only one that looked at me like a normal person, not as an overweight person, not as a female, not as somebody who’s all in our head. He actually listened and he knew. To me, without those two, Dr. Christensen and PHA Canada, I would probably be dead. Even just the overwhelming grief that comes with knowing that you’ve been diagnosed with a disease that you’re going to die from, and knowing that in the back of your head and having to deal with everything that comes with that is scary. But without those people, I don’t think I’d be here. Things would’ve been too tough.
 
This disease is very challenging on multiple aspects of it and in multiple areas, whether it’s mental health or just with your actual physical health. Knowing that even though you’re taking the meds, I’m not going to get better. I’m going to actually over time probably get worse. So even though we’re trying the meds I’m on now, I spoke to him a little while ago and he says, well, we’re going to try the new medication that’s out, but we have to wait until we get approved. 
 
I think for me it’s the actual breathing and knowing that it’s only going to get worse, but then also having to deal with that mentally, being scared of when it does get worse. What’s my life going to be like when it gets worse? Am I going to have to stop working? Am I going to lose more friends? Am I going to lose family members, because they think I’m just faking not being able to breathe? I think it’s everything about this disease, but having the supports there from PHA Canada and from Dr. Christensen, that helps so much, because you know are not alone. There are people out there that understand you and can appreciate what you’re going through and help you get through that.
 
Having someone who knows what you’re going through is extremely helpful. When first diagnosed, I heard the statistics is one in a hundred thousand, so you know that there has to be other people out there, but you have no way of knowing who those other people are. You have no way of knowing if you’re all alone right now, and if anyone is anywhere near you that you can talk to about what I’m going through is normal. Now, every person’s journey is different, but I think some of the same things apply to everyone. Everyone struggles with the breathing aspect. Is it normal that on these new meds that I still can’t breathe perfectly? That’s a question I had. I had at that time no one to ask that question to, and I didn’t want to appear stupid or dumb in front of my doctor. No one wants to do that. So, it’s like a question of, well, do I look stupid by asking my doctor is this normal, or is there someone around me that I can ask and not look stupid?
 
On the medication I thought, great, I’m going to be able to breathe. But then to know that you’re not, but then to have that person there tell you that’s normal. It’s normal that your fingertips might still be blue. It’s normal that you’re going to struggle some days harder than most. At the PHA conference in 2024, it was in Calgary and I live in a prairie province. It’s very flat, very cold in the winter. Traveling to Calgary which has a lot of mountains and is very high up, I was worried about breathing. To be able to talk to my PHA buddy and PHA Canada and my doctor, they were able to tell me, it’s going to be okay. We’ll give you a little bit of supplemental oxygen and you’re going to be okay. But those are questions that if you’re all alone and don’t have that support system, you’re not going to know. You’re not going to have those answers, and it’s going to further put you, I feel, in a depression that you can’t climb out of without the support.
 
For me, I’m hoping to be able to help other people because, in our province, there’s not a lot out there for people who have been diagnosed. What gets me going every day is knowing that I’m working with my PHA buddy and we want to set up a support group in our province to be able to help other people through this is what gets me going every day. Knowing that there are people out there that have been 20 years, even 10 years, my PHA Buddy’s been nine years. I know I’m not going to die necessarily tomorrow, and that makes me feel really good knowing that that’s not going to happen. To me, I’m still young. I’m only 50. I was diagnosed when I was 48. Knowing that I’m not going to die tomorrow is wonderful, because you do get that scary feeling. Like if you Google it at seven to 10 years. Well, I don’t want to die before I’m like 60. No one wants to die that early. Some people won’t live that long. But knowing that there are people that have is very encouraging and gives you hope, and hope is all you have to fight this disease some days it seems. 
 
Yeah, hope is important. I really hope that recording these messages helps a lot of other people. I know that there’s got to be people with PH out there that don’t live anywhere near a center, but maybe can listen to your podcast and get some sense of I’m not alone. There are other people who are out there in this world that are suffering, but hearing these words can offer them some encouragement. 
 
My name is Tanya Stinson, and I’m aware that I’m rare.

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