This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it via the transcript that runs below.
I’m Aware That I’m Rare: Eileen Washington
The phaware® interview (Episode 121)
Eileen is a pulmonary hypertension patient from Texas who was diagnosed with PH following a severe car accident.
I’m Eileen Washington, and I’m from Marble Falls, Texas. I am a pulmonary hypertension patient.
I was in a car accident in 2012, but everybody tells me that’s not the cause of it. But that’s when all of my troubles started is after that. It was a road I had been driving every day from, I lived out in the country. I drove 26 miles to take my daughter to school. I did that from kindergarten until her senior year, and it was the week before her senior year, and I was going in the week before school started to do a coaches’ breakfast, and a car in front of me turned into me, because it was a two-lane highway. She didn’t have a blinker or anything on. It was in the only passing lane on this road. And I went to pass her, and she turned into me and it flipped me, and I ended up in a tree, and I broke my back, and I was squished, I was squished in the car.
And I was Care-flighted to Austin. I was in a back brace for 10 months, and then after that, I started back walking. I was walking four miles a day, five and six days a week, with a friend of mine, and I was always out of breath, so I could walk a flat surface forever, but if you did even a tiny bit of an incline, I couldn’t breathe. So, I started seeing a pulmonologist, who saw a tiny spot on my lungs and thought maybe I had inhaled some of the airbag dust. But they watched it for like a year and it never grew, so they said, “There’s nothing wrong.” And I’m like, “Then why can’t I breathe?” And they would send me to a cardiologist, who checked out everything on my left side and said my arteries were clear, that if I would just lose 5% of my weight, that it would be all right. And I did that for, up until a year ago.
I kept bouncing between the pulmonologist telling me it was a cardiologist problem, the cardiologist telling me it was a pulmonologist problem. Finally, I’d gotten really, really bad and, like I said, I went to Wisconsin to see a great-nephew. I got on the plane just with my regular not feeling good. But when we landed, I didn’t think I was going to make it off the plane, and for the whole week I was there, my nephew would have to drop me off at doors, pick me up at doors and this was going from, I had still been walking all that, and you start feeling like a hypochondriac. But I really couldn’t walk. And it didn’t matter if it was cold, if it was hot, if I was indoors, if I was outdoors.
So, when I got back from Wisconsin, I had two great nieces and one of their mothers, that are nurses, and have been a long time. And I told them about all of my symptoms. I said, “Come up with any test you can think of.” And they came up with I don’t know, five or six blood tests. I took them to my nurse practitioner and I said, “Will you run these tests?” And she’s like, “Yes.” So she ran the tests. The next day, they’re like, “Go to the hospital.” And I went the next day and had an echocardiogram that showed my heart was really large. So then my cardiologist, who for three years had been saying, “Ain’t nothing wrong with you,” he’s like, “You need to go to the hospital now, to the other hospital, a heart hospital.”
And I went, “Well, my daughter’s getting a scholarship tomorrow at lunch and I’m going to go to that.” And he’s like, “I highly recommend against it.” And I’m like, “Well, I don’t care. I’m going to go to that, because I’ve been telling you for three years I need something and one more day’s not going to make a difference.” So, I went to her scholarship lunch and then the next day, I checked myself into the hospital. Stayed there seven days. The week before I went there, I had put on 24, 25 pounds, in just a week’s time, so they took off that much weight in about five days. They took it off and I was in the hospital seven, I think. On the last day, or the day before, I was checked out. They did the right heart catheterization, to determine for sure that it was pulmonary hypertension.
And when they said those words, it was like them giving me a death sentence. And I’m not the type of person that can read ahead. I don’t know the progression. I don’t know that I want to know the progression. It’s just like is, when something changes, then I’ll check to see where I’m at in that. I trust my doctors and they tell me I’m doing good, so I feel good and I hope I keep feeling good. It was a relief in that sense, but I did not want it to be … I didn’t want it to be that. So it was just like, this is what I have. I told my family, “This is what I have. I don’t want to discuss it with you. I don’t want to hear any horror stories. I don’t want to hear any happy stories.” And it took me probably about a month or two, and then it was like, “Okay, now we can talk about it a little bit. You can research if you want to. Don’t tell me. And then go on from there.”
After you’ve been told this, in Austin, allergies are, it’s not in the brochure, but if you live in the hill country, there’s allergies. So, every time I breathe different, I’m like, “This is it. It’s changing.” But then I’ll go in. I’ve had a couple of right heart caths. And they still say everything’s improving. My doctor tells me that my numbers don’t match me. I mean, like he expects to see a much sicker person than what he sees when he looks at me. And I’m like, “Let’s keep it that way.”
I think everybody should be aware of it. To me, a pulmonologist and a cardiologist, even though it’s a rare disease, if you have those same complaints for any length of time, they should check it even if they don’t think that’s what it is. So, I think doctors need to be more aware of checking this out. Listen to the patient. I’m not a doctor, but I do know my body and fat, skinny, whatever. I knew something was different and it wasn’t getting better. I don’t know if anything would have changed if they had checked me earlier. I’d have been scared for three more years. I don’t know. But my cardiologist actually, a couple of weeks ago, I do drug testing for testing people that are on drugs, that are trying to get their children back or on probation, that type of drug testing. And so it’s at a clinic, actually at the nurse practitioner that finally ran my test on me.
But he works there two days a week and he actually came up about three weeks ago and said he felt like he owed me an apology, which I thought was nice. It was nice of him to admit it. And hopefully, I think he’s more aware now.
I’m Eileen and I’m aware that I’m rare.
EVERYBODY HAS A STORY. WHAT’S YOURS?
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