Joellen Brown - phaware® interview 465

Joellen Brown shares her experience with pulmonary hypertension (PH) on the 15th anniversary of her diagnosis. Joellen was born with a hole in her heart and had her first open heart surgery at the age of two and a half. She believes she may have had PH since birth, but was not aware of it due to limited research in the 1950s. Joellen emphasizes the importance of having a supportive medical team and family, as well as being proactive in advocating for one’s own health. She encourages newly diagnosed individuals to seek out support groups and emphasizes the need for early and appropriate treatment.

My name is Joellen Brown. I am in Newport Richey, Florida now. I was diagnosed 15 years in May with pulmonary hypertension. I was born in 1956 with a hole in my heart. Back then, there wasn't much information on correcting it or how they were going to go about doing it. I was about two and a half when I had my first open heart surgery and they put a patch on my heart. I went through the majority of high school, not being able to take gym, because they really didn't know if that patch was going to be pliable to exercise and all that. I was also told not to have any kids, which thankfully, I didn't listen to that. I ended up with three girls and no issues, and they were healthy.

I've got three older sisters. I was the only one with the heart issues, so it wasn't anything like hereditary or anything like that. When I was about 40 years old, they told me that I needed to have another open heart surgery, because I had a tear in my aortic valve. So they went in and I have a cadaver valve. In my early '50s, I started noticing major weight gain and really breathlessness, tired all the time. I had been seeing a cardiologist all my life and nobody had ever mentioned that it was any kind of a lung or heart issue, it always had to do with the heart.

I finally went to my regular doctor and she had me walk around the hall. At that time, my oxygen was 67%. I was sent home on oxygen. That's how my journey with pulmonary hypertension went. They first thought I had asthma, so I was put on an inhaler with the oxygen. That didn't work. I went to another cardiologist who was also a PH specialist. He's the one that diagnosed me with PH. But he had told me too, that I might have been born with it. But then again, back in the 1950s, there wasn't a lot of research on PH. So who knows? I might've had it all this life and not even realized it.

So all that time, it's always been the heart thing. I'd always gone to the doctors. I didn't really have to worry about my weight, until after I had my kids and I had my second open heart surgery. That's when my weight started creeping up on me, which might've been back then, part of PH, I don't know. So now 15 years later, they're saying that my PH is from congestive heart failure and scoliosis, which is what I was born with. I was born with scoliosis, with the hole in my heart, so I have that against me as well.

I think at the very beginning, I had a wonderful PH doctor. My team is what really got me through everything. But then again, that's well and good, but you also have to have that family support as well. Great, the treatment is helping you and everything, but you really need that mindset of having the support of your family to be there. Everything kind of fell into place when I was diagnosed. I want to think that I was one of the lucky ones. I didn't have to go through years and years and years of doctors. I was a special case, because of my open heart surgery at such a young age, on top of having the pulmonary hypertension.

My cardiologist at the time, was also a pediatric cardiologist, and that kind of helped. Whenever I went in for any kind of test, they always had to work with my body and my issues. It wasn't like the same thing that they would do with somebody else. I want to think that it was all to do with the doctor I had at the very beginning.

I am divorced. I'm pretty lucky that I'm able to still take care of myself. I'm a mother that I tell my kids everything. I don't want to keep it secret, because I want them to know that if anything ever happened to me that I can't speak for myself, I want them to know what I would want. So I know there are some other people out there that are like, "My family has no idea what I'm going through." I tell my kids pretty much everything. They've gone to doctor's appointments with me. They've been there when I've been in the hospital, and that has been wonderful.

Right now since I'm in Florida, I have two of my daughters that live very close. That's been really helpful. But I'm not driving now too, so that's been a challenge in itself. But moving to Florida, my health has gotten so much better. My sister and I live together now. My lifestyle is much better because I do feel better. I think this was a great move for me health wise. I've lost weight finally after a year and a half. I have a great team. That's been probably the hardest part, moving. I look back at several years ago and how my health was at that time, which was not very good, and how much it is today. It's really has improved. I'm really thankful for that. I think that's a lot to do with your mindset and the team and fighting for what you need. It's definitely a journey I don't wish on anybody.

The one thing that I always tell people that are newly diagnosed, because I've been on several sites on Facebook, is everybody is different. What's going to work for me might not work for you, but getting the right doctors is the best thing. But my biggest thing that I tell people is, everybody is different. You need to get that treatment right away. It's not a wait and see type of disease. It's not going to go away on its own. You need to get that right treatment. You have to be your own advocate. You have to be out there and ask questions. There's no right and wrong answer, but you need to know, because you only have this body once. You need to figure out how it's going to affect your everyday life.

I had some great mentors when I first got PH, on Facebook, that are no longer here, so I try to remember what they told me to tell other people. I was born sick and I had to overcome a lot of stuff when I was little. I think that has gone on to me as an adult that is sick. I'm on oxygen now 24/7. I will always be on oxygen, so I try to be an advocate for getting the right type of oxygen I need. I don't know what would've happened if I didn't have the hole in my heart when I was little and all of a sudden, I'm 52 years old and I've got this life-threatening disease. I don't know if things would be different. It's still a shock, but I've always had people telling me, especially when I was younger, they were cruel to me at school, telling me I was going to die when I was 13. You live through that and you're like, "Okay, well, I'm 14 and I'm still here." I have more appreciation for my mother as I'm older, because I can't even imagine what she went through in the 1950s, taking me on the bus to go to the hospital and all that stuff. I can't even imagine that.

What brought me here was my grandson. He lives across the street. That's my motivation to be well enough to see him grow up. That's me doing what needs to be done to keep me well. If it means staying in a lot more to stay healthy, then I'll do that. That's my motivation and just to be in spite of everybody that said, you can't do something. Just moving from Ohio to here was a trip and a half, having a friend of ours that had a horse trailer that moved all of our stuff here. Of course, I had to fly because I couldn't do the long trip. I still think we've been here two years and I'm like, "Did we really do this?" A couple years ago, I probably wouldn't have. But it's one of those that you wake up and you're like, "I'm ready. It's time."

Where I used to live in Ohio, it was kind of an independent living senior place. Out of all those people, there was one lady in there that had PH at that time. I'm like, "I can't believe that I lived with somebody in this building that has the same thing that I do." She was on oxygen as well. Well, she ended up passing away. She was older than I was.

One thing I would like to tell the people that are newly diagnosed, the best thing is to get into a support group. That really helped me, being around other people that have the same disease. I went for many, many years, took my mom with me. She enjoyed it. Learned a lot about pulmonary hypertension. I have not been able to find one here in Florida, so that's going to be on my bucket list for this year is to find a support group near me, or at least someplace I can get to.

My name is Joellen Brown, and I'm aware that I'm rare.

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