I’m Aware That I’m Rare: Thekla McGinley (484)

the phaware® interview

In this episode, Thekla McGinley, a PAH patient and advocate, shares her journey with pulmonary arterial hypertension (PAH) and the changes she has witnessed in the treatment options and education for medical professionals. She emphasizes the importance of raising awareness and ensuring that patients have access to proper treatment. Thekla also discusses her role as a support group leader and encourages patients to communicate with their doctors to advocate for themselves in order to receive the best care.

My name is Thekla McGinley, I’m from Bryant Arkansas. My connection to the PH community is I am a PAH patient. I have been for, oh my goodness, I think it’s 11 years now. I am a Support Group Leader in Central Arkansas and I’m an advocate for PAH patients. At the very beginning, there were five medications to help us. I started on one and then I was on two. I think now there’s over about 12 FDA approved medications. It’s been quite interesting to see the changes in the education for doctors and nurses, and any medical professional that gets to help us now. I’ve said before, I’m not afraid to go to an emergency room anymore or a doctor, because I’m not afraid of them killing me for not knowing what I know or having to teach them. I’ve been very fortunate to be able to go in and help educate some medical professionals, also.

It’s been quite the ride. I have seen such a change and I’ve seen people be able to live with this disease so much better than we were able to when I was first diagnosed 11 or so years ago. I keep saying I’m eight years past my expiration date. I’m excited for what’s in the future for us. I think I’m going to get to see something out there where this is a livable disease. I’m sad that it’s taken so long, but I’m very excited to be able to see something like that.

I’d like to say that I did my first phaware interview, I think I was number 63. I’m not a hundred percent sure on that. Since then, and I said at the end, I’ll say it now, the first year I was diagnosed, I waited to die. I waited a whole year to die. The second year I was pissed. I was pissed at everybody. No one could say or do anything right. The third year, I put my foot down and decided to do something about it, because I was going to advocate for myself because I wanted to live. I did not like what this disease had done to myself and others. The way it brings on a depression and a loneliness because it was so misunderstood, and don’t get me wrong, it’s still misunderstood.

Part of my journey was to make sure no one had to go through what I went through to get a treatment available. Now, there’s so many different options that are FDA approved. It’s amazing at the things I’ve seen. I actually don’t feel as bad about the disease as I first did. I’m not a hundred percent with it, we’re not best friends. It does run my life every day, but we’re getting to know each other a little better I guess I could say.

I did have a lot of anger because of the people who weren’t understanding the disease because they’d never heard of it. I just decided that no one should have been treated the way I was, by friends, family, and medical professionals. So I decided to start talking and not shut up and just start talking about the disease anytime someone would listen to me. It’s just not right that someone with another disease that’s more known has all of these availabilities to them to help cope with everyday life and someone that gets diagnosed with pulmonary arterial hypertension doesn’t because it’s so rare and people don’t know about it. I’m here to change that, and that’s what I’ve been trying to do. This has got to be known, so people don’t sit there alone and think everyone’s saying, I don’t have anything wrong with me. I don’t look like I’m sick, and they don’t understand the severity of what it could be and do.

The first time I met a person with PAH, it was actually in a Facebook group. That was the first time I felt connected maybe, and she’s passed on now. But I did get to meet her at the first conference that I went to in 2016. I decided that I needed to be more aware of what was going on and meet more people. I did go to a few meetings that they had in different parts of Arkansas, but nothing in central Arkansas. It was okay, but it was a lot of older people who had secondary PAH. They were different. They were different from what I was experiencing and had to go through. I got a hold of the Pulmonary Hypertension Association and asked them about the need for a support group leader in Central Arkansas. That’s when they told me that there was a need. I just said, sign me up.

At my first meeting, the first person who came, came about 30 minutes early. She hadn’t met another person either who had PH except for a family member. They had it familial. You just hold hands and we cried, because we could tell that we knew what each other had going on inside our emotional brains because of this disease. It’s such a connection to meet someone who understands what you’re going through, because nobody else can understand it. Your caregivers can’t understand it. So it made me want to educate and get more awareness in Central Arkansas, of course. So people again, didn’t have to go through the hardships of trying to get diagnosed and trying to have treatment.

For the first three years I had to go out of state, and that’s not right. That’s not right at all. I had to come back in state because insurance wouldn’t cover me anymore. So it’s been hard, but no one should have to go through that. We should have stuff right here for us, fighting the insurance companies, fighting the oxygen companies and so on and so forth, and the nurses and the doctors, but I’ll do it for anybody.

One of the key moments that changed the game for me, I had been a support group leader for a little while, maybe a year. I became friends with a lot of the drug reps who supported our meetings. A couple of them called me and said, Thekla, you’ve got to meet this doctor. He wants to treat PH in Central Arkansas. I said, okay, whatever, I heard that before. I mean, I was so desperate. I went to a doctor who wasn’t even affiliated with a hospital because I was so desperate to have local treatment, and that was the worst mistake and only lasted a couple of months.

But anyway, they had this doctor that wanted to come and I said, okay, let’s have him come and talk to us about PH and just see what it’s all about. He was the very first doctor who came in and explained how pulmonary arterial hypertension affects the entire body from your head to your toes, and everything in between. No one had ever discussed that with me, although I knew some of it, and no one had ever discussed that with the patients that were in my support group. That was one of the things that this has got to get out there, this information and education has got to get out there to people and their caregivers so they know that this is not just one thing, whether it’s heart or lung. It’s a lot of things and they need to know how to have it treated, and they need to know where to go and be treated.

One of the best feelings in the world is to walk into a doctor’s office and say, “I’m on this pump for pulmonary arterial hypertension.” And they go, “Oh okay, I understand. How long have you had that?” What, are you kidding me? You really know what this is about? Just getting it out there, having some of my family realize the severity of this disease has been eye-opening. A few friends who realize it and know that I can’t just get up and go sometimes. I have to have a little planning. Can we just get up and go to the lake? Nope, I need a couple hours before I can do that. I got a lot of stuff I have to take with me. My doctor has gone from 70 patients to hundreds of patients with PH now, and knowing that that many people have been helped is just amazing and that they’re getting proper treatment is just amazing to me. I’m so happy that I could be a part of the journey.

When I went to the PHA convention in 2016 in Dallas, I volunteered because I was on scholarship, so of course I was going to volunteer. I’ll do anything. I volunteered to hand out the shirts and a lady came up to me. We did the same thing, we just looked at each other and there was a connection. We grabbed hands and her name is Yanny and she’s from Puerto Rico I believe, she lives in Florida now, but we’re still friends. We couldn’t even really communicate with each other at that time. But we held hands and we cried and we hugged, because the emotion of knowing these two people from different parts of the world knew exactly what the other one was thinking, because of the emotional stress that you have to go through with this.

That’s happened several times, several times. I try to be an ear for a lot of the people in our support group who have bad days and just listen to them and tell them it’s okay to get mad. It’s okay to get angry. It’s okay to cry. Please do it. This is like going through stages of death, because your life is completely different from the way you knew it. You have to do it differently. It’s not going to change everything. You just have to find different ways to do it. But it’s okay to feel bad about it for a little while and seek help, talk to anybody.

I portray that everything’s good. For the most part, it is. I have a beautiful life, but I’m very scared. Actually, at this minute right now, my body’s going through changes and we’re having to change some of my medication, and there’s some more health scares that have come up that we’re waiting to find out what’s actually going on. I’m scared what tomorrow will bring. I worry if I’ll be here two years from now to see my grandchildren start school. I do worry about that, but I try to live every day and have fun the best I can. Tomorrow’s not guaranteed for anybody, but if I’m going to be here, I’m going to have fun. I also keep saying, I think I’m going to see this as a livable disease. It might be too late for me to take the medication to make it a livable disease, but I’ll know I was a part of it.

When someone gets diagnosed with pulmonary arterial hypertension and you have to start talking to your doctor, you have to complain to them. No one likes to complain, but you have to, because that’s the only way they know the symptoms that you’re going through and if your medications are working the proper way for you. Just anything, a slight rash, you have to let them know what’s going on. That’s the only way they know if you’re on the right dose and the right types of medication. Don’t be afraid of being a complainer, because this is the one sickness, illness, disease that you have to complain about what’s going on. You just have to. You have to have the will to live. Make sure you can get along with your doctor and you feel safe with them.

I’m Thekla McGinley, and I’m aware that I am rare.

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