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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

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Cathy Downard - phaware® interview 275

Aug 23, 2019

Lupus and Pulmonary Hypertension patient Cathy Downard discusses her rare disease diagnosis and how she battles depression by helping kids in her the community become citizens.

My name is Cathy Downward, and I am a pulmonary hypertension patient.

I was diagnosed with lupus when I was 17. Like most teenagers, I was pretty independent and I wanted to do everything. So when I was passing out, because I played basketball and I didn't want anything to stop me from playing basketball or being in the school plays, I just didn't tell people.

I was diagnosed with lupus, and then after many years of being treated, like I was a leper in the emergency room. When you go in with a problem and you're in pain or whatever, doctors, a lot of times write you off, if there's not something they can test for and see that there's something wrong with you. So I'd made up my mind. I was not going to go to the emergency room, no matter what.

I got really sick in August of 2013, I'd had some strokes, I'd had some other things, but I was in the midst of this, “I'm not going to the emergency room.” And when I was sick, I was obviously running a fever, but I wasn't really making good decisions.

It was about a hundred degrees in Indiana. I had two pairs of pajamas on and three quilts, and no air conditioning, and I was shivering in bed. I just went to sleep. I got up in the middle of the night and had to go the bathroom, and the point when I realized I had to go to the emergency room was when I had to crawl to the toilet.

Then I was like, "Okay. I took this little far." I went to the emergency room and they began to treat me for sepsis, which I had, but I had it, and I'm lucky that I did because there's no way I would have went to the emergency room. Through that visit they sent me to an Indianapolis hospital from my local hospital, because my oxygen saturation just kept plummeting no matter what they did. They were about 24 hours from intubation.

When I was finally told that's what I had, the doctor that told me said, "Well, we think you might have pulmonary hypertension." I didn't know what it was, but I already had lupus so it didn't matter. I was laying in an ICU bed and I'm looking at him and he said, "Don't worry. We're going to try some pills and if that doesn't work, we'll just try a transplant." I was like, "Transplant what?" That's how I found out.

I did two oral medications for the first year. Over the course of that year, I continued to get worse. I was in school to become a teacher, and so I was traipsing across campus with oxygen tanks. I finally went to the doctor and I said, "I think things are getting worse. I don't know what we'll do from here.".

Then he said, "Well, we've hired a PH specialist in the group and I'm going to send you to him." At that point they did at another right heart catheterization with no sedation. People don't realize that anesthesia affects your right heart cath. I was at a 90,( the pressures and my lungs), and he said during that right heart catheterization they decided that I was a candidate for Remodulin. They put me on the Remodulin, and I was a different person. I have been ever since.

I had IV at the time, I have had some problems with the medication. Lines continued to come out and become infected. I had seven lines in one year, and so they decided to move me to Sub-C.

I was pretty upset and cried because everything online talks about how bad it hurts, and it does. It hurts, but I was able to start teaching this last year. I taught for a whole year special education, sixth grade and there is no way with having the lines that kept coming out, and having to have those emergency trips to the hospital, and a hospital stay over a couple of nights, that I would have been able to teach for a year. So it's providing me with purpose.

I do suffer with some depression and anxiety from time to time, but I know myself. I know the depression is going to come, and I know that I'm going to rebound. When I get depressed, I try and think of some way that I can help someone else with PH or just someone in general. There have been times when the only healthy thing that I could do is from a hospital bed, compliment the nurse, or try and pick up my own tray, or do something of that nature.

I mentor our junior National Honor Society and they do five hours of community service a semester. So not only am I responsible for helping kids learn to read, and helping kids learn things that they need to be able to get the rest of their education, I also can benefit other areas of the community and help them become citizens. And they need me. I come from a very poor school district. They need me to show up every day. They need me to correct them even though they don't like it in the moment, to help them become adults. I am not a long-term survivor yet, but I will be.

My name is Cathy Downward, and I am aware that I am rare.

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