Pulmonary hypertension and COPD patient, Gary Bruce discusses how PH has impacted his life. Gary finds strength through his faith and through the freedom of the open road to cope with his rare disease diagnosis. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod
Gary Lynn Bruce. I'm from Prosper, Texas. I found out, it had to be May of 2009, I first had pneumonia, and pneumonia led to going on oxygen and none of the doctors at this particular hospital I was in could understand why my arteries or whatever was so rigid in my neck. Upon that they sent me to UT Southwestern, and they did a heart cath, and out of that they told me I had pulmonary hypertension. I didn't even know what PH was, and they started doing different tests and different things, and trying different medications. I have high blood pressure, COPD, emphysema. Everything that goes along with it, I have.
So, it's been a journey. It hasn't been easy because I've been, most of my life I was an active person. I love the outside, I had my own little landscape lawn service. It took that away, but I'm still alive. With the doctors that I have, and doing exactly what they asked me to do, I'm still here, and when I was first diagnosed with it I was very fearful. I was afraid of dying. That's a fear still today, but it's not as bad as it was. Now I hope that, if not in my lifetime, after I'm gone, that there will be a cure for PH. But I'm going to fight, and fight until I got no fight left in me.
I met another patient at UT Southwestern, I'd gone for a check up, and that was the very first person I met, was sitting in a hallway, getting ready to do her six minute walk, and we began to have a conversation, and she was telling me about what she had gone through, and had been in and out of the hospital, and that it was an awful disease. But, for some reason it's like we bonded, and I found out that she was in a support group. She invited me to join a support group, and I've been a member of that support group ever since. Through that support group, I have other members that have the same problem and issues that I have, and it's been very helpful.
But, I consider myself as being blessed because I see patients with pumps, I see patients that goes in and out of the hospital weekly. I've never been in the hospital with it, and when I tell pulmonary doctors that I've never been in the hospital, they don't understand it. I have a strong religious belief, and I know through the help of God and medication that that's working.
Now, I'm at the point where I'm 65 years of age and I'm asking more questions about where can I go to get something different. Not better treatment, but what's out there because now we are at the point of discussing lung transplant. At 65 years of age, a lung transplant, both lungs, is very fearful. I don't know, it's a fear. I'd much rather live the rest of my life with oxygen and medication and a strong support group that to be opened up and not survive, because I lost a good friend at the group last year from a double lung transplant, and never left the hospital.
But, I know whatever's in store, I know there's some good things out there, and I need to know what options I have before I continue on this journey with even discussing a transplant. I've got family members, I've got three lovely grand daughters, two grand sons. I want to be able to see them grow up. I'd like to be able to go around with them. I have a three-year-old grand daughter that's afraid of me because of the oxygen. It's hard, they don't understand. They know that they wasn't born with oxygen in their nose, so when they look at me, even little kids in the store look at us funny, but I try to make a joke and I tell them: “Don't ever smoke cigarettes and listen to your mom and dad.” I do this and do that, but it's a hard life, it really is, but it can be a good life. It can be a very good life.
There's not a day pass that I don't get up and fight this disease. I was married for the second time, it only lasted five years. I now live alone, I cook for myself. I maintain myself. I do all the things that I'm required to do to stay as healthy as I possibly can. I work out through pulmonary rehab twice a week. I walk a mile and a half every other day. I've lost thirty-two pounds in the last year and a half, I'm trying to lose fifteen more. Last November, I walked the entire mile in the PH Fest, which was a milestone for me because I couldn't do it the year before, and it's like I'm on this training program, and I can't wait till November to do it again.
How I fight this disease. I try to read up on it. I'm not in to research which I should be, I'm beginning to get into it because I'm going for a second opinion, but I need to learn more about how to live with this disease, and live a little bit better life. It's not bad right now, but it's not good either. There's a lot of things that I want to do. I can't even enjoy and airline flight anymore, because they afraid of blood clots, and I love to travel. I love seeing the world. I've never been out of the country, but I told my church members, when my lung capacity had increased last year, and it was a good thing, and I told them if I could get off of the oxygen I was going to go to Israel. It didn't happen, but I'm thankful.
Instead, my lung capacity kind of failed a little bit, and it was because of weight. I gained a little weight. It doesn't take a whole lot to send you into a spin. I've trained myself to deal with the side effects of all this medication. It's aggravating, but I'm still alive. I'm still alive. I just recently bought myself a new vehicle. I bought a little Nissan Altima. When I purchased that car I didn't know what I got. I got myself a little dream car. It's like a little sports car, and I get out in it, and when I just want to get away, get things out of my head, I turn on the satellite radio. I live in the country, which is now growing into the city, but I can ride the back roads. I can fill it up for twenty dollars, and I can ride forever. Some days when I just want to get away, I get in my vehicle and I just ride the back roads. I see horses. I see cows. I see all the things that I enjoy. I love nature.
So, that's what I do. I try to find something to take my mind away from PH everyday. I get up every morning at five o'clock, six o'clock. I use facebook to spread the word of the Lord. I do bible scriptures. I do this thing that god gives me, and I do that every day. Then I go out and I do something. But, when I get tired I come home and take a nap, and then I find something else to do. I enjoy it, just doing different things. I enjoy going out. I didn't do that for five years when I was married before. I was sitting in a chair wasting away. Now, I go to doctors appointments. I do whatever I feel like I want to do. I don't want people to worry about me because I'm okay. I've gotten myself covered.
I've got buttons in my vehicle I can press and get emergency people there. I have that at home in my apartment. It doesn't matter anyway because if it's my time, I'm going to go anyway. I try to do something to keep my mind. Then I work out twice a week, and then I do my walk. That's what I do.
I'm Gary Bruce and I'm aware that I'm rare.