Lenise Whitley - phaware® interview 556

The Loneliness of Pulmonary Hypertension

After years of being dismissed, misdiagnosed, and told nothing was wrong, Lenise Whitley finally got an answer - pulmonary hypertension. In this powerful episode, she shares her journey through cardiac arrest, loss, faith, and isolation, and how support groups, advocacy, and self-belief helped her reclaim her voice. A raw, honest reminder of why being heard can be lifesaving.

My name is Lenise Whitley. I currently live in Brooklyn, New York. I've been there since 2012. I'm originally from New Jersey and I was diagnosed in 2012. Honestly, I had never heard of pulmonary hypertension. Nobody I knew heard of pulmonary hypertension. So it was more important to me to at least know what is going on with myself, because it was a two-year battle getting the diagnosis. I kind of really jumped in to get all the knowledge I could.

I lived on the Jersey Shore at the time, and I used to walk the boardwalk in Asbury Park. I noticed that I was struggling to walk distances and the speed that I had been doing for years. I think what really made me realize that something was wrong was it was a group of older ladies in their eighties maybe, the ones with the pink sweatsuit, pink sneakers, pink headbands or yellow or green, whatever. They all matched. It got to the point where they were out-walking me. I thought, wait a minute, I'm in my fifties, they're in their eighties. I knew something at that point had to be wrong.

I had a cardiologist because I had been having episodes of cardiac arrest. And, "Oh, nothing's wrong. You're okay. Lose weight." Which I had a problem with because, quite frankly, the doctor was telling me to lose weight weighed more than I did. He suggested, "Oh, well try out Weight Watchers." I said, "Well, when do you want to go?" He said, "When do I want to go?" I said, "Oh, no, you're not calling me fat and you're fat too. No, it doesn't even work."

But I stayed with the cardiologist and he did tests, but it wasn't until I got to Mount Sinai that I found out the tests he was doing was not a complete set of tests. It should have been more than what he did for me. This went on for two years. I had been admitted in and out for cardiac arrest. My heart actually had stopped twice. I went to see him for a follow-up. I waited over an hour and he finally came in. He looked through my files and said, "Oh, okay." Listened to my heart. Listen to my back. "Oh, well, you know what? I see that you're doing well, so come back in six months."

I waited right until he got to the door and I said, "So the fact that my heart stopped means nothing to you?" Then, he came back in and he looked at the files and I looked at him, and at that moment I said, "No, I'm not coming back."

To be honest, I kind of gave up. I had been going through this for two years. I had been admitted in and out, and he kept saying, "No, no, we don't see anything. Nope, nothing's wrong." I knew it wasn't in my head, but I got to the point where I thought maybe it is in my head. So rather than find another cardiologist, I just stopped going to cardiologists.

I had moved to New York to be closer to Mount Sinai Hospital, because I was in their liver transplant unit and I wanted to be close there. I worked for the federal government so I transferred my job to New York. I am still not right in New York. You know, the subway, you have to go up and down the steps, up and down the steps, and I'm struggling. I'm like, four steps, stop, breathe, four steps, stop, breathe. Finally, what really changed it for me was I was coming up the steps and I could not breathe. I felt like my chest was being crushed. I came up and I was leaning on the wall, and this homeless man came. I tell you, if he had five teeth, I'm giving him credit for three I didn't see. He leaned over top of me, grabbed me on his arms and said, "Hey, baby, you need mouth-to-mouth?" I can't breathe. I can't talk. I can't get him off me. That's when I said, "If I don't die, I'm going to find a cardiologist."

I actually went to my liver specialist to recommend the cardiologist. Well, for one thing, she took me seriously. The other cardiologist in Jersey was a man. In New York, she was a woman. I said, "Right off the bat, look, it's not anxiety, it's not in my head." I said, "The only thing making me stress out is the fact that nobody's listening to me, nobody's believing me." She said, "I'm going to listen and I'm going to believe." She ordered an echo. I never had an echo first off, never in New Jersey did anyone give me an echo. The echo was some kind of thing where you were on the treadmill and they were monitoring you, then two men came and picked me up off the treadmill, threw me on the bed, and then they injected me with something and that's how they found it. But the thing was the doctor reading the results said, "Okay, your doctor will have the results in a little while, so call her and make a follow-up." I said, "Okay."

So, as I'm getting dressed, she comes back and she knocks on the door and she says, "I'd see your doctor sooner rather than later." That's when I called my doctor. She said, "You know what? We're going to do a left-right heart catheterization. Your echo's not that good." I had the heart catheterization. The doctor who did the catheterization was not my doctor. He said, "Oh, your heart looks good, everything." I started crying because I'm like, "No, I don't care what it looks like, something's wrong."

I said to all the nurses there, "I give up." I went into cardiac arrest. They found out who my doctor was, and she said, "Hold Mrs. Whitley there. Do not let her leave. I'm coming." It was that doctor who said, "Okay." He was looking for PAH. You don't have PAH, you have PH because you have left heart failure. Until that point, I had no idea I had left heart failure, and I certainly didn't know about the PH. I thought, so what does that mean? I need an inhaler? I had no idea how bad this could get.

To a certain extent, it was a good thing because I said, "Okay, good. I knew it wasn't all in my head." So I felt justified. I really wanted to get on the train, go to New Jersey, and I would've probably been arrested or something, but at least I knew. Now I know.

The first thing I did was what everybody tells you not to do. I went to Dr. Google and I read I would be dead in three years. So I'm planning my funeral, but then I found the most wonderful support group. I think it's called Presbyterian Methodist Hospital in Brooklyn, run by Dr. Ruth Minkin. Oh my goodness, I learned so much. I remember going into the room and looking at people with oxygen and saying, "Huh! My people. It's not just me, it's a community." That's where I really learned a lot.

Well, for one thing, it made me feel like I wasn't by myself. There were other people there with this disease I had never had heard about. I believe that as PH patients, you don't get a lot of support like if you had cancer. I had cancer, I had liver cancer, I got support. I had asthma, I have support. But PH patients, because you look okay, so it's not taken as seriously maybe by family and friends. This was some place that I could go and talk about what I'm going through and people don't say things like, "Oh, no, so-and-so has such-and-such and it's so much worse." Or, "Oh, you'll be all right. You just need to exercise more." It was a place of camaraderie.

I also attended the support group at Mount Sinai. When I became a board member at Team Phenomenal Hope, I started the support group because that was the one thing I felt like people and caregivers needed. They needed somebody to understand that you may have an appointment or you may agree to do something, but all of a sudden you get sick and you can't. We have, patients have, what I call our bed days. We can't get out of bed.

I think PH is like one of the loneliest diseases you could have. Going to support group made me see that, okay, there's other people like me who I can talk to and get some kind of information and encouragement, and that is really the best thing about support groups.

I think for me, the biggest thing that happened was that my husband had died suddenly and he had died a year before I started having all these issues. He would've been my biggest supporter. My children are grown. They're married, they have families, when I was diagnosed. Family can be funny because I think it's some family members that love you so much they don't want to see anything wrong. They don't want to know that you have a disease that is incurable. They don't want to know the downside because they want everybody to be well. Then, there are family members who say, "Oh, you think that's something? Oh, I've got such and such, and that's so much worse. You look good to me." So that's the thing with PH, not everybody looks sick.

Friends can be funny also. "Why can't you come to my party? You look okay now. Well, just come and if you get tired, you can lay down in my bedroom." And then when I went on tanks, "Well, what do you mean you can't come? Hello? Are you coming to get me? Are you going to make sure that I'm back before I run out of oxygen? Are you doing these things?"

I was in church a couple of weeks ago with my brother. I have traveled with three tanks to go to church because I have a church that actually the pastor is concerned and has oxygen tanks. So if something happens to mine, I have tanks. So what I found out was that for the most part, family-wise, I don't talk about the disease. Friend-wise, a lot of people have dropped off of the radar. But the ones that stuck are like gold. Absolute gold.

I truly do rely on my faith. I believe that without it, it would've been horrible. It took me a couple of years to get to that point. It's not something that happened right away, because, honestly, I was mad. I'm not mad at God, but I was a little bit disappointed and I asked to have this taken away and it wasn't.

One of the things that I found out was people have the disease and people die. But one thing I have found was that every single person that did and did die left a part of themselves here because they showed us how to be better, how to work harder, how to be more grateful, and they were warriors.

I hate when people say, "Oh, well, we lost so-and-so to whatever." No. If they fought, you didn't lose anything because they left a piece of themselves and they showed the rest of us how to act and how to deal. So my faith is a big thing.

This whole disease thing has taught me how to be more humble, how to be more grateful, how to take each day as the gift that it is, and not to be too hard on myself. If I can't get out of bed, I can't get out of bed. If I can't go someplace, I'm sorry, but I can't go someplace. It has also encouraged me to be a patient advocate, because there are so many people who don't have anyone. There are a lot of people here, maybe who came here for treatment, and they left everybody behind. I became a patient advocate because of that and because I know the loneliness of the disease.

I also started going to school. I'm in my junior year of biblical studies. Pray for me. I have to do my finals. I found out that I'm more capable than I thought I was because, honestly, I became a widow at 51 suddenly, and I never thought I could do anything like this by myself. This disease has taught me how to be stronger. It really has.

The first thing I think is to find your balance. Like I said, for me it was my faith. For somebody else, it might be meditation, for somebody else that might be walking in the park daily. Find what brings you inner peace.

Support groups. Not all support groups are created equal. Find the support group where there's some kind of order, where the person who is in charge does not talk you to death or allows other people to talk, because the support group is just that, a support group for people and everybody has something to say or they would not be on the support group.

Your doctor. Have a great doctor. If you're afraid to ask your doctor questions or you're like, oh, I hope he doesn't get mad if I say that or she gets mad, then you need a new doctor, because this is what this person is supposed to do: answer your questions, take time with you. If you get one that's constantly looking at the watch and you've been there sitting for 45 minutes waiting, get a new doctor and make sure that doctor has a great nurse, because that's who you're mostly going to be connecting with, the nurse.

Also don't expect everybody to accept this disease. They're not going to. People that you thought would never, ever walk away from you will do it. It's not so much because of you, it's because they can't deal with it. So understand that, that it's going to happen. Don't get crazy over it.

Join a good support group. Shoot, join my support group. I'll love on you. PH, like any major disease that right now there's not a cure for, you have to have support. You have to have a good relationship with your medical staff, and you have to be your own best advocate. Doctors are people, they're not sitting up high. They're people, so they make mistakes or miss things too. So those are my suggestions.

My name is Lenise Whitley and I am so aware that I am rare.

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