Michelle Johnson - phaware® interview 279

Native American PAH patient Michelle Johnson describes her long road to diagnosis. Michelle's journey was complicated due to her cultural customs and her struggle with accepting her illness.

My name is Michelle Johnson and I'm a pulmonary hypertension patient.

Back in 2011, I had been coughing for a year. 2008… 2009… 2010 was approaching and I was just coughing, coughing, coughing, coughing, coughing. I couldn't stop coughing. I went [to a doctor] and they kept misdiagnosing me, and they kept telling me I was crazy. They told me I was a hypochondriac. They told me I was depressed. They told me I had allergies. So they told me I had asthma, seasonal asthma. They told me that they wanted to give me breathing treatments, steroids. I had fatigue syndrome. They said maybe I was just too stressed out, and I was living at a high elevation. And all these things that they kept saying, everything was coming back normal.

At the end of 2010, I started bloating up with water. In 2011, it was around March and I had a silent MI, and I ended up in the hospital. Then at the end of April, they flew me out to Albuquerque, New Mexico. From there, what led to that was a heart attack, a full blown heart attack. So then there they told me, "You have two weeks to live and we can't do a transplant because you're 400 pounds. Your BMI is 56, this and that and the other. You're too high risk, you'll probably die through the transplant, and we need to do a lung and a heart."

So I freaked out. I told my whole family, "I'm dying. This is it. There's no therapies. There's nothing they can do for me that would be fast enough to keep me alive." So from there (because I'm Native American, I'm Navajo), my family started having ceremonies and they started to do Native American church ceremonies. We have a medicine and they started giving me the medicine. So when I was taking this medicine, it kept me alive. Then from there I kept getting different people, doctors, things started happening and changing in my life. Finally on May 7th, they diagnosed me with pulmonary arterial hypertension idiopathic.

To me, I didn't know what that was. They told me, "There's probably a thousand of you. This is like one out of a million people." They gave me all this statistics. They told me, "We don't know anything about this disease at the heart hospital of New Mexico." They said, "Your best bet is just to move to a lower elevation."

So I moved my whole life to Arizona where my mom lives, which is 1200 elevation. So moving there I started to breathe a little easier, but I was still bloated with water, couldn't breathe, my lips were blue, I ended up in a wheelchair. My legs were so swollen, I couldn't feel my legs. I had leg pain. I had diabetes and pulmonary hypertension, congestive heart failure. All these things just kept crashing and I was just ended up in the hospital.

I kept going to the hospital, hospital, hospital and nothing was helping. I tried all these therapies and like probably nine or 10 different therapies and none of them were working. Pretty soon it was 2015 and I was raring into the end of summer and I just started blowing up with water again. It was just uncontrollable. By that time I had had two right-heart CATs and so they said, "You have severe pulmonary hypertension, your heart's going to bust, because it's really, really dilated."

[The doctors] were just saying all these things to me. I got a cardiologist, a pulmonologists. I had a little team of six doctors and all of them had no idea what pulmonary hypertension was. On my reservation where I lived, nobody knew anything about it. I had no idea what to do because I couldn't even talk. I couldn't even laugh. I couldn't even function. I was so depressed and I didn't know what to do, so I just slept. And I had a daughter and she would try to help me.

I was bedridden for five years. Finally, one day, I couldn't breathe and I went to my doctor and I told him, I said, "I can't do this anymore. I need to do something." They gave me a cardiologist and my cardiologist, he said, "I'm going to send you the Tucson. They have a pulmonary hypertension clinic there." He said, "You're going to see this doctor and this doctor. I'm going to send you there for a transplant orientation and see what they can do about transplant."

And so I went and they told me, "We can't do a transplant because your BMI is too high and you're still too overweight." So I was like, "Well, what am I going to do?" And so they had me in the ICU. They admitted me, because I was building liquid in my lungs. So they put me in the ICU. Once they put me in the ICU, my doctor, he said, "We're putting on Remodulin.” I said, "What's that?" And he said, "It's uncomfortable. It's this, this, this, and this."

I'm like, "No, just let me go. You know, it's my time. Maybe I just need to go." I was scared of transplant, scared of any medicine. It wasn't going to work. I was determined. I didn't want to accept my disease. I just wanted to go. So in my culture, that's what we do, you know? I thought, "Okay." Because in our culture we're not allowed to have transplants. So it was an omen. I just thought, "Well, I'm just going to do this Remodulin." My daughter, she said, "Mom, you can do it." She was only like six or seven. And she said, "Mom, you need to try everything because if you die and you didn't try everything, you're going to regret it. So try the Remodulin." And I said, "Okay, I will." She said, "I'll help you." And I said, "Okay."

My mom encouraged me. So I did the Remodulin and once their module started working, the first six months, I felt energy enough and I got physical therapy. So I started moving my legs and I got out of my wheelchair. Then little by little I got a walker and I started using a walker. And then I started walking again. And then once I started walking again, then my whole life changed. And then I started to lose weight rapidly.

Then I started getting into support group meetings. I decided that I was going to lose weight and I was going to do this and do that. The energy started flowing after I got on Remodulin. My whole life completely changed and it was full of hope and I got to meet new people. I was on the pulmonary hypertension support group. I was on the Remodulin support group and I was going to support group and I was slowly starting to make my bed and all these things. The Remodulin really helped me.

And so now I own my own business. I am back to beading professionally, I'm back to cleaning houses, detailing houses. I'm a caretaker part-time. I'm all these things that I never thought I would ever be again. After losing the 200 pounds, I decided that I was going to be healthier and think healthier and eat healthier and everything has changed in my life.

Just all the positivity and not giving up and holding onto hope and seeing the light into the tunnel, all those different things that people have shared and said, and those all came to light. My life finally, they say [came to] fruition. And so that's what's happening in my life and I'm very, very, very happy to say I look forward to tomorrow and all the days to come and I pushed myself more and more every day to do more, to be more and to support and be supportive and give wherever I can. Pulmonary hypertension, I want to immerse myself in it and teach people and show people that anything is possible.

My name is Michelle Johnson. I'm aware that I'm rare.

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