Kevin Allen - phaware® interview 552

The Pulse of a Fighter: Survival, Stigma, and Shaking Up Healthcare

They told him he had months to live. He used them to rewrite the rules. Kevin Allen survived near-death, systemic medical neglect, and an invisible disability most physicians don’t understand. Today, he’s pushing policy, pressuring universities, and pioneering new models of PH patient-centered care.

My name is Kevin Allen. I am a psychological science pre-med major at Texas Tech University in Lubbock, Texas. I was diagnosed with pulmonary hypertension on June 15th, 2020 when I was flatlining in ICU at 3:00 AM. I woke up to a man named Dr. Victor Test, who's a world-renowned pulmonary hypertension specialist. Shortly after that, I went on to spend a month in the hospital. I was on dialysis. I thought I had two hours to live. They just played it by ear from days to weeks. By the end of that month, I told him I was going to dedicate my life and education and career to helping patients with pulmonary hypertension. So far, I've lived up to that.

Almost immediately, once he got me when I could walk again, because I couldn't walk for a while, he had me visiting patients. I created a support group in Lubbock. I reached out to the Pulmonary Hypertension Association and said, "Here's what I do. Here's what I've been doing. I would like to have a relationship here." They adopted Lone Star Lungs as one of their support groups on their website. That's helped me a lot, because I can arrange support groups online and advertise it a lot easier than I could just on my own. That's how I'm connected. I live with pulmonary arterial hypertension.

Right now, I'm 33 years old. When I was 25, I was really big into working out, wanting to try to push into bodybuilding. I was real big on supplements. I would work out every night. I had a partner whom I was very serious and committed to at the time. In the gym, when you're building muscle and you do more reputations and you add weight, the idea is to gain muscle and lose weight. I started doing the reverse. Instead of adding weight, suddenly I couldn't do as many reputations. Then, it went from I can't do as many reps to I'm having to decrease the weight that I'm using. I was like, something is very wrong. That should not be happening.

My next indicator, later that year, at 25 years old I started experiencing problems keeping up with my partner intimacy-wise. That was very odd to me. Once you get past the whole ego thing of this is embarrassing, it's concerning. 25-year-old males should not be experiencing those problems, coupled with the workout regression.

Shortly after that, I just got to where I couldn't lift weights. I couldn't cycle. I couldn't do cardio. I just started gaining more and more weight and I developed a cough. For a long time, I didn't know what that cough was. What it was was fluid building up. Eventually in January of 2020, I started passing out. At first, I would be walking and I would feel like a tickle, like you've got a cold or something. I would cough. Eventually, that cough turned into three or four coughs. Then, I'd black out. I could be standing up, walking around, black out. It was fluid building up in my neck and everywhere. I was gaining more and more weight.

For a little bit, I hit a threshold where I didn't gain. I just kept coughing and coughing. I gained something like 40 or 50 pounds in a month. It was just rapid water weight. My lips were purple. I worked at a school called South Plains College, a community college, during the pandemic. So everyone's freaking out, oh God, this guy's coming in here, coughing his head off. I was hiding in bathrooms coughing, because I knew I would pass out. I was like, no, they're going to send me to the hospital and think it's COVID. It's not COVID.

I went to eight different doctors trying to tell them, "Something's going on, something's wrong." I begged one female doctor. She ran a couple of tests on me and a CT. She said, "I'm not saying this, because I'm not a cardiologist, but you have, to me, all the indications of someone who's fixing to have a massive heart attack. I'm going to refer you into a cardiologist.” During that process, I tested negative for strep, COVID and flu six or seven, eight times. They were convinced it was something else. I was like, "No, it's definitely not, but okay."

I went to the hospital. I see a cardiologist. He said, "Oh, well, you're young and all these problems you're talking about, you're just overweight and that's what's going on. I don't see anything here, but I'm going to order a medical vest and have you wear it. We'll see you in a month and see what happens." That month didn't happen, because that same week I hit my 169th pass out right as I was going into the hospital. All I remember from that point is coughing. I was paralyzed with my mouth stuck open. The doctors and nurses, they thought I was joking around playing. I'm sitting there paralyzed, unable to move with my mouth stuck open. To be honest, all I wanted to do was go to the bathroom.

Then sometime that night by 10:00 or 11:00, Dr. Test was involved. They're fixing to hit me with defibrillators. They had a line of nurses and doctors. They brought my family in. I said goodbye to everybody. They were sure I was fixing to go. They didn't know if it was COVID or what. All their tests were coming negative. They had 13 IVs coming out of my neck.

Somewhere in there, Dr. Test, he didn't know what to do, because I wasn't responsive. Grabbing him and saying, "Help me please," was the only thing I had done in all those hours. Don't know how I did it. Don't know where that strength came from, but the moment I did that, I could watch him around the room doing everything he could trying to figure out what was going on. He took control of the room. Right as I was about to flatline somewhere around 3:00 that morning, he tried a medicine called epoprostenol, which is Veletri.

I'm so close to flatlining, I like to say I flatlined. I didn't quite get there, but it was like half a second there. My heart started beating again. In fact, I think one of the doctors grabbed the nurse with the defibrillators, because they were afraid they were going to shock me and undo everything. They went on to pull off 144 pounds of water weight from heart failure. My God, they did more procedures than I can honestly remember or even count.

I was on a table multiple times with doctors terrified to touch me, and Dr. Test would have to tell him, "If we don't do this, we're going to lose him. Go ahead and do it. He's stable. He's just really sick." Just a lot of procedures that I don't fully remember everything about anymore. It took a whole month to get me out of the hospital and get me stable enough where I could leave, I could walk on my own, followed by about a year's worth of recovery at home to where I could walk around, and I could be what for me is normal as far as living and walking around-wise.

During that point, once I recovered enough, I had a bunch of professors reach out to me. I'm assuming during the pandemic, a lot of people disappeared from school and everything went online across the US. They reached out to me. They were like, "Where'd this student go? He had all these high grades, all these scholarships, and he just goes off radar." One of them, she reached out to me. She recently passed away this year. She was a dear friend of mine, Dr. Christina Garrett. She took it upon herself to figure out what happened to Kevin Allen.

Once she found out, she started networking. She got me plugged into a host of different professors. When you're that sick, you lose a lot of skills. I had to relearn algebra, I had to relearn how to write papers. All these professors came together and they said, "You worked really hard when you were at this school to give back. Now you need help. We're going to help you." They really taught me and re-educated me and mentored me and got me back up to the collegiate level I was at where I was ready to attend a university.

I piddled around for about a year, just taking psychology classes, majoring in psychology. While visiting patients of Dr. Test, I think we had a conversation. He was like, "What do you want to do?" I said, "Well, I like the idea of being a psychologist, but I really like working with patients." I said, "But here's the thing. I believe the biomedical model and the biopsychosocial model don't belong separate. I believe there's a way to bring those together."

What that means is healthcare should be structured around the patient. You talk about palliative care and stuff like that, but it's going a little bit further. We decided, "If you go to Texas Tech and you major in psychology and you take your pre-reqs and you decide that you want to go to medical school, we'll try to get you into Duke University. That way you can be one of the first patients with PAH that also becomes a doctor specializing in PAH, and you'll have an advantage most physicians won't have, but as a patient that really understands it."

That's where psychology really came into it, because I think it's very important that we don't get so caught up in healthcare and medicine that we lose sight of the humanizing aspect of these patients are people. They're just like you and me. It doesn't matter who's got what education or what financial level you're at. There's an interpersonal level there. I have been able to really connect with them in ways that a lot of doctors at the hospitals here have not been able to. They'll talk to them. The moment I go in the room, a few minutes into hearing that I have it and talking to me, I walk out of that room knowing their life story and their plans for the next 10 or 20 years going home. It gives them a lot of hope, a lot of stuff to look forward to.

My hope is that having the disease I can provide a level of care that they normally wouldn't get anywhere else wherever I end up, and also to contribute to research for the disease as a patient, and that may be limited. Whatever I can do, I'm willing to do it and I've dedicated my life to doing it however long that takes.

Originally, my idea was I visit a lot of patients for Dr. Test. I'm in a unique position, so I said, "Well, I'm going to create a support group." I wanted to find a therapist or psychologist that would be willing to lend some free time to come and be there when needed. In fact, I even wrote a paper when you have support groups and they become so large, if you don't have a mental health expert, you go from having a support group to a regression group.

As a pulmonary hypertension patient, the simple explanation for that, I experienced so many near-death experiences that I became unfazed. When I would be close in a situation, near death and, “Oh, I need to change my pump. I'm just going to go take a nap.” Don't do that. I got in a situation where for a little bit I was on the fence about forming a support group, but I went ahead and I did it. I thought, there's a lot of young adults with pulmonary hypertension. I live in West Texas, and that happens to be the medical hub of West Texas.

There was a lot of opportunity to do some good there. I just had to figure out is this the right thing to do? Eventually, I decided for the patients, bringing them together, having each other's support was great. I just always emphasize, I'm not a mental health expert, none of us here are. If you do have these issues, I have resources available. Or if you want to reach out to a therapist, I provide a list of information at those support groups. Prefacing it that way, I was more comfortable doing it as a psychology major.

When you're in West Texas and you're in the medical hub, what that looks like, people from Amarillo, Midland, all across Texas, they come here to see Dr. Test, straight to his clinic. A lot of our members are scattered across West Texas. Texas is very big, so not all of us are in Lubbock like I am. The more I looked into it, I saw support groups in Dallas and Houston, San Antonio, Corpus, El Paso. So I started Lone Star Lungs, and it's just a pulmonary hypertension support group for West Texas.

Dr. Test comes, and he'll talk to patients and visit with them. He'll educate the public on what I'm doing. I visit patients of his. Some of them come from California, some of them come from Florida, some of them come from New Mexico. I invite them to be part of it. If I have a meeting, not everybody can afford to just leave and come right back. A lot of times they can structure their appointments on the day of those support group meetings. That way, we get to be around each other throughout West Texas, because you can drive a long time in Texas and not see anything. It brings all of us together so we're not as isolated as a lot of people that try to form support groups are.

I'm big on in-person support groups and bringing card games and board games to patients, their families and their kids, just to get people out of their heads, to encourage social interaction, to really encourage camaraderie with each other. I like to invite doctors and medical professionals and ADA professionals into that, because it humanizes them and gets them out of the clinic. They can really sit down and interact and eat and play games and socialize with their patients. It becomes a little more personal and less clinical at that point.

There's a time and place for the clinical and medical and healthcare, but then when you humanize them, it's a lot easier for patients to become comfortable with their medical experts and their healthcare providers. I think it brings an aspect of palliative care to the physician, which usually, physicians are normally too busy to take that on. When you open that door and you bring it to them and structure it as something they can just come into when they have time, that gives back to the community in a way that's very rare. You're not going to really find that. A lot of doctors don't have time to do that. Dr. Test is very good about attending those meetings, talking to people, educating the public.

With that support group, I visit everyone from teenagers that are diagnosed to elderly people that have been diagnosed. I try my best to bring them little books on pulmonary hypertension, what they could and couldn't eat. I give them my number, my email. I let them know I'm not a medical professional, so there's certain questions I won't answer, but I'm here. There's support here. I'll put them in touch with other members if they need that type of support. I tell them about PHA.

A lot of patients are diagnosed after flatlining. Then, you wake up and get told, "Hey, you have an incurable disease. It's not only incurable, it's progressive. It's only going to get worse." Psychologically, that does a number on a lot of patients. A lot of patients give up. I'm very adamant don't sugarcoat things, but at the same time, don't go in there and crush their hopes and spirits. There is definitely hope with this disease. It's the best time to be diagnosed with it with all of our medical advancements.

A lot of the pain we go through, if you're on remodulin, playing card games and board games, tabletop trivia and being around people, that's a great way to get out of your head and not really think about or realize you're in pain. I play a card game called Magic: the Gathering. I've played that game for years. It's one of the most popular games in the world. It's not for everybody, but for me it's great to get out of my head with, just like other board games, Terraforming Mars, Catan. It can be real simple stuff, UNO!, Skip-Bo, Yahtzee. You could argue that bringing that stuff to patients is a type of care or a form of therapy, in a way, that really helps people cope with pain, with depression, anxiety, doubts they may have, living with the disease in general.

To this day, I encourage mental health experts also to come to our support group meetings. That way, I can offer patients as many resources as I can possible because of how big West Texas is. Bringing in mental health experts, diagnostic experts, your ADA experts, I've invited elected city officials to be a part of it to come and learn, because a lot of cities, they don't know, hey, we have these really rare medical professionals here. We need to support them and their clinics and uplift them, because this is very unique and not everyone has this. We need to be promoting this and bringing attention to it the same way they do with other diseases and conditions and disabilities.

In fact, I'm in a couple of pushes with my support group. I'm pushing Lubbock, Texas to endorse the document that I call The Pulse Heartiness Initiative. What that is a document of policy, measures, systems, operations, not for higher education institutions to automatically adopt, but that they could to help patients with pulmonary hypertension and like diseases and conditions. That came into being when I asked my support group and then different support groups around the US, if you're a student, what accommodations would benefit you? What do you wish was an accommodation or considered one that isn't? Be it starting class early. I will argue as a patient, pulmonary hypertension necessitates being able to start class ahead of other students, because you don't know when you're going to get sick.

You can think of higher education as a treadmill and it's going to keep going. If you have a couple of days where you're down and you're sick, or in my case a week or two, that semester keeps going. You're expected to learn everything and catch up while simultaneously learning new material. You can't do that without learning the old material, so the new material piles up, you've got to get it done. Suddenly, you can't study and you're failing quizzes and tests and before you know it, the semester's over. You're having to take an incomplete. You finish the course not really learning anything and go on to the next course not ready for it.

There's a lot of accommodations I've put in there that I think would help people if institutions were to adopt it and find a way to create some of these unique accommodations that I've created. In that document, I talk about a shuttle service with golf carts, because a lot of institutions, they'll argue, "Well, we have buses." People don't think about the burden it is to be a student with pulmonary hypertension carrying medical equipment, your oxygen machine, batteries for the oxygen machine, on top of your books, on top of that, you get fatigued and heat-fatigued. Then you get brain fog, you get sick, you're in severe pain. They don't consider a lot of these things. I think shuttling students from classroom and across campus on a golf cart when they've got a complex and advanced cardiovascular pulmonary disease is a great thing that a lot of schools don't think about.

I've asked different universities, including the one I go to, please let's pilot what it would look like to wholly and adequately accommodate a pulmonary hypertension patient. They've been very unresponsive with that, which is why I created that document and have pushed the city of Lubbock to look into endorsing it at some point just to encourage them to look at it and say, "This is something we should take seriously." If healthcare often needs to be structured around students, well then so does education, in my opinion.

There's no reason that healthcare and academia cannot merge and come together. Especially, when you live in a city like I do, where you have Texas Tech University and Texas Tech Physicians, Texas Tech Health Science Center, deep medical ties where everyone's conjoined together. There's a lot of opportunity for disability innovation there.

Even with my support group, I'll tell patients, "If you need me to pick up the phone and make a call and try to serve as a liaison, because you're not getting accommodations you need, I'll do it. They're not going to like it, but I'll do it." I've had institutions tell me, "We're not going to talk to your doctor, because we understand pulmonary hypertension." Just like Dr. Test tells them, "I don't think you do, and I know you don't. Most doctors don't even understand it."

So, patients with pulmonary hypertension that want to pursue education, they run into a lot of barriers. I have tried my best to use my support group to push on those barriers and remove them. One example of that is, not to knock Texas Tech, that's where I attend. That's where I go, so that's where a lot of my stuff and experiences come out of. I would say the same things if I was attending Princeton or Yale or any other university. I created an organization to advocate for students to have, number one, better accommodations, number two, to advocate for better disability inclusion practices.

There's a student there besides me. She has pulmonary hypertension. The way Tech operates is they have an area zoned where you can practice freedom of speech. I'm not going to get into the political part of that, but there is a ruling that that whole practice of zoning free speech is unconstitutional. I created that organization Beyond Barriers, Inclusive Advocates of Accessible Education. In preparing for the fall semester, I messaged student organizations and grounds. I said, "Here's my situation. I've got students that are sick, they're disabled. One of them has the same disease I do. She's on life-sustaining medication. She can't be in the heat, she can't be exposed to the elements. She needs to be able to sit down, just like I do, and just like I can't. We need an indoor spot."

They said, "We don't have that. We don't offer that. It'll disturb people." I said, "Well, I'm not going to use a voice amplifier. This is an ADA issue. We need an indoor spot, because otherwise you're telling me that you want students to risk their lives just to practice the First Amendment and recruit students, which is what we were wanting to set up a table for and let people know who we are and what we're here for and what we're about. She's also part of my support group."

They pushed back a little bit and they said, "Well, we'll offer you a room." I said, "No." I said, "That's not going to work. You can't just stick a bunch of disabled students trying to recruit members in a room, because then you're inhibiting disability inclusion. They're away from people. At this point you're infringing on their First Amendment by restricting their freedom of speech."

Tech went silent. I went to social media. I made a bunch of noise about it. A week or two later, I got a message from the ADA director. He said, "I heard about your situation. Thank you for coming to me." I guess they forwarded everything once I made enough noise. So, he's agreed to look into finding a location for us to have that indoor area where we can get students, because I had to push back like I did to help the patients, whether they had pulmonary hypertension or other conditions. It's very hard, even as a young adult, just to get an education with pulmonary hypertension. I think support groups are a great resource for students, adults, anyone to have access to.

Coming together for support is one thing, but the type of support that I try to offer patients, be it resources to mental health care. Lubbock has a thing called a Blue Card service that I promote, which is if you fall within a certain income level, you get discounts on a lot of your medications and hospital stuff. I provide that information to them. I provide information on if they need help with housing, if they need help with food, and contact a university directly and say, "Hey, here's who I am. Here's my experience, who I am, what I do. This student needs X, Y, Z and here's why."

So that's what I do with my support group and how I serve now. I don't care where that university is. If it's in Dallas, Texas, I'll call them. If I've got a member that's moved from Lubbock or Midland, Odessa, Amarillo to Dallas and they're not getting on the ball with accommodations, I'll call up there and advocate for them. I don't mind doing that.

Americans with disability have been an integral part of society for a very long time. In my opinion, it's long overdue that cities, institutions, and societies begin acknowledging and accepting that and pushing more disability inclusion. I think recognizing support groups is a great way to do that, recognizing different conditions. We do it for breast cancer. We do it for HIV, AIDS, lupus. There's no reason not to do it for pulmonary hypertension. There's no reason not to push awareness for pulmonary arterial hypertension. Especially, when it's as misunderstood as it is. People cannot see it, so they don't really have an idea of it. There is a distinct lack of knowledge, information and education on pulmonary hypertension. That ties into a lack of disability inclusion fostered by a series of factors influenced by historical, sociological and financial aspects that have gone on for decades.

My hope is that my work here will have helped and enabled a lot of patients to achieve their full potential within society and be able to meaningfully contribute back into society, be it economically, maybe even taking over the support group from me one day or building on the work of other medical professions, doctors, becoming an educator, whatever it is they go into. Support groups play into that.

I approach support groups in a way a lot of people don't, and I tend to run mine more like an organization, even though it's not. To me, if you're going to have a support group, you're going to support people. Maybe it comes from the mental health education that I have in psychology. Maybe it comes from my passion to go into medical to help patients. Maybe it's both combined. I really believe in broadening what a support group can be and giving everything I can to those patients. If that includes making education equally accessible to them, stepping on some toes and calling out different university leadership, I don't have a problem doing that.

My name is Kevin Allen, and I'm aware that I'm rare.

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