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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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Gary Bruce - phaware® interview 373

Jun 28, 2022

Pulmonary hypertension patient, Gary Bruce, discusses how meeting and marrying another PH patient changed the trajectory of his life and how she inspires him to battle his rare disease.

Hello. My name is Gary Bruce. I live in Little Elm, Texas, which is about 30 miles north of downtown Dallas. I live here with my wife Deborah. We've been here in this location now for about three years. We enjoy it. It's a nice little quiet community.

In 2016, I attended my first PH Conference. At that time, I had been dealing with pulmonary hypertension for about four years. I was so excited about attending the conference, because I had waited two years to make it. My PH was really, really out of control at that time. I didn't really understand what PH was.  I was really depressed and fighting for my life, basically. I basically was trying to give up hope.

When I got to the conference, and I saw people like me, I lost it. Strange thing happened the following morning, I met a young lady by the name of Deborah. We had a little conversation at the breakfast table. There was something about her that was different, with her fight with PH. When she walked away I said, "I've got to talk to her again."

Later that evening we met up. We started talking. We spent about four or five hours that night, just sitting and talking. Now, today, she's my wife. We're both fighting PH together. We're going into our sixth year of marriage. We're both still fighting as hard as we can, to battle this disease the best way that we know how.

Deborah is a strong woman. She's a strong PH fighter. Actually, we both lead the support group here in Dallas area. So we're both very much involved with pulmonary hypertension. In April, we had our fifth year anniversary, and we went back to the Omni hotel to celebrate. We went to the restaurant and we sat in the same booth, the same section, and that was amazing.

What really happened was that I was pretty depressed at that time. I wasn't sure if I was going to live much longer. I basically had given up. I was into another marriage that ended up in divorce. After that, I took control of my life. I took control of my medications again. I started taking care of myself better. I listened to the doctor. I did exactly what they asked me to do. I started trying to lose weight. At that time, I was up to like 270 pounds. I was struggling. Every step I took I was really fighting to breathe. They told me, "If you don't change the way you're doing things, you won't be here." So I dropped about 40 pounds. I take my medication the way it's prescribed. That helped a lot.

Deborah put a smile on my face that hadn't been there in years. Deborah is so loving and caring about others, and she took me and told me, "Look, you can do this. You can fight this." She encouraged me to go daily and do things that I needed to do. Still today, when I get lazy and don't want to do anything, she encourages me, "Hey, you got to do this." One of the things she asked me to do is don't leave her. I don't feel as great right now, as I did before the quarantine, but I'm trying to go back and reignite myself. I've got to lose about 20 more pounds.

Right now, the first I would say is, find a support group, even if it's on Zoom. Find someone that you can speak with, daily, or once a month, whatever you need, and share your feelings with them, and do it that way. I've got a life coach. I'm working now a little bit. I'm beginning to walk every other morning. It's a process. But I still take my medication. I got behind on my doctor's appointments during the quarantine and I'm trying to play catch up with that. Matter of fact, I just had a light heart scan two weeks ago, and they were shocked at my numbers. They was much lower than they expected. So I'm happy with the results.

I just encourage people to never give up. I say I'm going to fight and fight until I can't fight no more. It's hard, but we have to. I really do miss my support group. We're doing it on Zoom, and it's not the same. It's not the same. Right now we're working really hard to try to get back so we can encourage them, because it's like family.

Long term, for Deborah, and myself, Deborah, she accomplished something that she always wanted to do, here in Texas, during the quarantine, she got certified to become a teacher. Now she's a teacher at 6th and 7th grade level. She's working outside of the home. I look at her, she gets up every morning at 4:30 and works out. She goes to the gym. Those are the things that keep me going. If she can do it, I can do it. I don't go with her every day, but she encourages me to get up and move around.

I would say to never give up. Never look at the bad side of it. Find someone that is encouraging, and willing to fight the fight. Not exactly like I'm fighting, but similar. I found out, being a support group leader, that I had a lot to offer patients. It makes me feel good when I speak to someone, or I see someone, and I can just put a little smile on their face, or encourage to move on with this dreaded disease that we're fighting. That's my goal to help them evolve and get to the next level. Because it's hard. It's hard.

I get so much pleasure out of helping people with this disease. We have to keep encouraging people, and we just have to keep sticking together, and doing things together, positive things. Don't look at the negative, look at the positive. One of my lung doctors said, "If I was going to transplant you, I would have done it eight years ago. You're doing so well, I don't even think you need it." That was about two months ago. I'm going to keep fighting with this thing. I'm going to keep doing what I have to do. And I'm not going to lay down.

My name is Gary Bruce. And I'm aware that I'm rare.

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