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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 & Thursday!

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Kathleen Grady - phaware® interview 333

Jul 14, 2020

Pulmonary Hypertension Patient, Kathleen Grady discusses her road to diagnosis, her optimistic view on her rare disease and how she navigates the impact of #covid19. 

My name's Kathleen Grady, and I live in Cleveland, Ohio, and I have pulmonary hypertension for the last 11 years. My older brother, David Grady, has pulmonary hypertension. He was diagnosed a year before I was, but how I got diagnosed was kind of a fluke.

I had ulcers, and I went in to have them scoped and my oxygen dropped. The doctor sent me to my doctor, because he was very concerned. When I went in, it just happened to be a little medical center. I was living in California at the time. If it had been a regular hospital and I had to make an appointment, I would probably be dead. But he had said, "Oh, can you pop down to see my friend, the cardiologist?" I said sure because I didn't have to make an appointment, because I was really busy at work, and of course, work was much more important. I went down and he did an echo and called me that afternoon, pretty much hysterical, because he was like, "You have pulmonary hypertension. It's very severe," et cetera. I had not put anything down on my sheet that my brother had it, so they weren't even looking for it.

I actually went to a specialist in San Diego. They just put me on a couple medications. David was living here in Cleveland and he kept getting better and I kept getting worse. I eventually moved back to Cleveland so that I could be treated at the Cleveland Clinic. By the time I got there, I was in really bad shape. When they did my right heart catheterization, I basically went from the table right to heart failure ICU. Basically, if I didn't get the pump, I wouldn't probably live like two more weeks.

About 10 years ago, I got the Remodulin pump, much to my dismay. I really did not want it. I was not happy that it was going to make such a huge change in my life. But little did I know that without it, I would be dead, which I know, but it took a long time to be okay with having it. They weren't really sure I was going to do that well, because I was really very sick and my heart was really failing at a high rate.

A couple of months ago, I ran into one of my old nurses. She works in a completely different department and she hadn't seen me in a long time. When she came out to see me, she couldn't believe it was me. She was surprised I was still alive and I was looking good. They basically consider me one of their miracle patients, because my heart has regenerated itself. It will always show the symptoms of pulmonary hypertension, but it's basically minimal damage at this point.

I actually declined the pump when I was in the hospital. When I had the right heart catheterization, they left in the tubing. My jugular was still open so they could just plan on putting the pump right in. When my doctor came in and said he wanted to give me the pump, I declined politely. They had a family meeting out in the hallway without me. My family basically said, "You have to get this," and my doctor, he said, "I'm not releasing you from the hospital." I really did not go into this with a good attitude. If I could have checked myself out of the hospital, I would have, but I could not.

At first, I was really sick. I had to reach very high dosage before they could let me out. I couldn't even think about what the pump was doing to me because I was so sick from the medicine. But then when I got out, I had asked for help because people had to come over and help me because I was still so sick from the medicine. It was a struggle, I really learned to live one day at a time. I really had to be grateful I was just alive. I knew that it wasn't the quality of life that I wanted right then, but I knew down the road it would be better. I knew that I could get better, I just had to plug away at it.

Within a couple months, I was doing better. I mean, mentally, I literally look at it as, yes, I have a disease, but I'm not going to let it define me. That's what I struggle with from a lot of the PH groups, because I think people, they wallow in their disease. For me, I don't, I can't be that person. If you asked people who really don't know me, if they couldn't see my pump, they would never tell you I was sick. My friends know I have it and that I'm sick, but I don't let it define me. I don't live in the fact that, yes, I have a chronic disease that will eventually kill me, because I can't live like that.

I choose to look at the positive things about what it's taught me, how to be grateful that I have a different opportunity in life. If I can look at life a little bit better. I don't take it for granted as much. I'm sure I did when I was much younger. I look at it every day that I have the opportunity when I wake up, I have a different chance at making every day better. Part of that is because I know I struggled in the beginning, but I refuse to let it just beat me down. That's not how I wanted to live my life. I don't want people to feel sorry for me or anything like that. If I don't want people to feel sorry for me, then I can't feel sorry for myself.

When I saw my pulmonary hypertension doctor, we discussed how well I'm doing. He said that I'm a lot different from most of his other patients because I have a better outlook on my disease. I look at life as my glass is full, it's not half empty ever. That motivates me to do better in life. He knows that has made a huge difference in how I've recovered from this disease.

I would say there are going to be good days and bad days, but the good days are going to outweigh the bad days. Technically, try not to look at them as bad days, I try and have bad moments. I would tell somebody that I don't look at it as the extended period of time, I really keep it you've got to focus on what you're doing that day. I would tell the person to focus on how they can make their life better. Sometimes that just means there were days that it was hard to walk up and down the stairs, but I made sure every single day I got out of the house. Knowing that it was going to be really hard to walk up the ... I lived on a second floor, it was going to be really hard to walk up and down those stairs, but even if I did it once a day, it got me out.

I made sure that I kept in contact with friends and that even if I had to ask for a ride to a place, I got somewhere so that I met up with people who were not focused on the fact that I was sick. For me, that's really important. I need to be around people who are positive about life. None of my friends treat me like I am sick or a victim. They just treat me as Kathleen. For me, I would tell somebody, those are the people you need to surround yourself with. I was really lucky that I already had those people in my life and I didn't need to surround myself with necessarily people who have the same disease as I do. I just needed to surround myself with positive people.

That, I believe, makes the most difference in my life, continuing on for the last 10 years, because when I have struggled or there've been times, yes, that I've had to go up on the medication and started getting sick again or I've had days where I really didn't want to go out. I have those positive people who are going to say, "It's going to be okay, but what can we do to help you? But you need to get your butt out of bed and meet us for coffee. We're coming to get you."

When it comes to the coronavirus, I am not necessarily the excessive worrier about it. I'm not concerned too much that it's going to make an impact on my life, because I do already take care of myself. I take the precautions as necessary. I work part time, and before they were closing down the businesses and stuff like that, I reached out to both my doctors and asked for their opinion on whether I should be working with people, et cetera, et cetera. They both said just take your regular precautions as necessary. My one doctor, he said, "Truthfully, I'd be more worried about you sitting at home for your mental stability," because he was like, "You need people." But even my PH doctor, he goes, "You're smart, you know what you need to do." He goes, "Just take the necessary precautions and live your life." Of course, then they shut down the world. I'm not one of those people that is going to think, "The person breathed on me, I'm going to die of COVID-19." I'm already one of those people that has tons of antibacterial stuff and I obsessively wash my hands. I already have done all the things that we're supposed to do. It's just life continued for me. The only difference is now I wear a mask out, when I'm out in public, but that's about the only difference, because I didn't have to really change anything. I'm not really a worrier. I'm not going to go out and a group of a hundred people, but if I have to go to the grocery store, then I go to the grocery store.

My name is Kathleen Grady, and I'm aware that I'm rare.

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