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

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

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  2. Tina Sudbury - phaware® interview 259

Tina Sudbury - phaware® interview 259

Jun 28, 2019

Patient Tina Sudbury discusses her pulmonary hypertension diagnosis and how she tackles depression and isolation battling this rare disease.

I'm Tina Sudbury and I'm a pulmonary hypertension patient.

I was chronically diagnosed with bronchitis and asthma. I kept going to an asthma specialist, and he was just like, "Nothing you do is working. You need to go to a pulmonologist." I got an appointment with a pulmonologist. Within three days, I had a heart catheterization and I was diagnosed that day.

I was scared. He literally came in, "You got pulmonary hypertension," left the room. I was on the table. Had no idea what I was facing. Everything online was like patients have so much time to live, two and a half years, non-treated. I was scared because I didn't know how long I had actually had pulmonary hypertension before they had discovered it. So I was terrified.

I had no idea what it was. Nobody had said anything. It was a week between seeing him and getting the diagnosis. Then he didn't see me for a month, so I was really scarred, because I'm like now I'm a month into this. I have no idea. Google was my worst enemy, because every day I was googling something, trying to find something.

When I finally saw him, he assured me that everything was going to be fine and started me on oral medication. I was so advanced that within three months, I ended up intubated in the hospital. When I woke up, my world was ending. I had no idea that I was that advanced. He said that this was all he could. He said I'd be on Remodulin as long as I could.

Then again I went back into intubation. Then he said that that was my last intubation. I could not have anything else. No surgeries, no nothing. I was online and I decided to google Facebook groups for pulmonary hypertension. That's when I started talking to other people, was online.

I'm pretty much home-bound. I am not allowed to drive because of the syncope episodes. Going out and meeting people has been really hard. I've spent a good part of this last year in the hospital, because of all the different aspects of being diagnosed and catching pneumonia a lot this last winter. I spent a lot of time in the hospital. So meeting people hasn't been very easy.

I haven't been to any support groups. It's just been all online. My doctor didn't say anything. I feel that if he would have given me more awareness about it and said, "This is what we're looking for. This is what it could be," given me some kind of information about it that I wouldn't have been so scared when he said you have it and left the room.

I think that if we educate more, then it would be easier for people like me that are newly diagnosed to understand what they're being diagnosed with. My kids are great advocators about it. They've wrapped around me, and anything that I have to go through, they're here for. They've all learned to mix Mom's meds. That was really hard for me, to go from being a mom, doing everything, to being on meds every day, something hooked up to your body, to being nothing. That's what I felt like. I felt like I was just nothing. I was just waiting, because I had nobody.

I saw a therapist. She didn't know how to really treat it because it's new to them. She knew it was a depression, but she didn't know. I could tell her something and she didn't understand what I was talking about. So she had to educate herself on what it was so she knew how to help me. But they've all pretty much said, "Here's medication. There's not much we can do," because they don't understand. So I find myself with my kids a lot.

I'm thankful. I just had my first grandbaby and he's two months old, and he's lifted my spirits a lot, because now I feel like I have something more to live for. My kids are all grown, so to have him is like, I get him every day. Every day it makes me smile that this is a life I don't want to miss. So it gives me something to get out of bed for, and it really helps with the depression.

I am Tina Sudbury and I'm aware that I'm rare.

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