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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 & Thursday!

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Jennifer Stone - phaware® interview 338

Aug 18, 2020

Jennifer Stone is a school teacher from the Los Angeles Area. She was diagnosed with PAH in July 2011. In this episode, she discusses how she is fighting this disease through clinical trials, staying positive, and having a strong support system.

I am Jennifer Stone. I am living in the Los Angeles area. I was diagnosed [with pulmonary hypertension] in 2011, and I actually started in a clinical trial right from diagnosis, so I did that for a little while until I had some side effect issues with one of the medications.

I was looking for support group help, kind of understanding what I was going through, and the L.A. area is so large that our main support group was pretty far away. So, I tried to do some organizing in the valley a little bit, a little closer to home. It's been hit and miss, and I just kind of try and stay active in the community with information and learning new things. My number one goal is really to kind of stay off of the pump, which I have successfully been able to do for eight and a half years.

I was having some difficulty breathing and chest pains, just challenges with normal activities during my day. I work at a school, so I'm constantly on my feet. I went to the doctor and they kind of brushed me off and told me I was overweight, and I needed to exercise. I'm sure everyone has heard that story before. They did a chest X-ray and I never heard anything about it after that. I was really lucky that the doctor that told me I was overweight, happened to leave my medical group, and I got assigned a different doctor who did take a look at my chest X-ray and said, "Something is a little amiss here. I'm going to send you for some further tests.” From that point it was really quick. I would say I was in a heart catheterization lab in like two or three months. Had a doctor, had a diagnosis, was on medication pretty quick. Once I got a doctor that didn't just brush me off, I was on a good path.

I actually have a family member that was involved in a clinical trial, not for PH, but for another medical condition many, many years ago, which probably saved his life. So, I had a really good understanding of clinical trials and their benefits. My doctor is pretty big on research. Pretty much, not every visit, but almost every visit, if I wasn't feeling great, it was, "I have this clinical trial that we should talk about."

She's really big into looking at different options, and it was presented to me as I was newly diagnosed. I'd never been on any medication. This particular study was for patients just like that, who had not been on anything else. It was probably pretty hard to find. I wanted to benefit science. It was not a study where I was going to get a placebo. I was guaranteed to get some sort of combination of medication.

Honestly, my doctor kind of says this is probably what I would start you on anyway. I liked the fact that I was really well monitored. I had appointments every four weeks. I was in the office. They did tons and tons of tests and spent a ton of time with me. Being that I was really new to the illness, I thought there were a lot of benefits. So, I thought it would be a good idea to just give it a go. They kind of let me know, if this didn't work out, I'd withdraw and I'd the go the regular way, but thought it was a good thing option.

The first trial I was in was about 24 weeks, so that's covered the first six months of my post diagnosis. Then I did my own thing with regular medication can be played around with a little bit. I was blessed that my health was pretty stable for years, and years, and years, and years. About nine months ago, I started to notice the decline in my breathing. I noticed a little more challenge with daily activities that were fine two years ago were all of a sudden not as fine as they were. I was getting nervous, because I knew I'm on basically one medication for each pathway. So, I knew that I was really limited as to what my options were going to be. I was looking at ending up on the pump, which was again, not my ideal situation.

My doctor talked to me and said, "We have this trial for the new Tyvaso delivery device. It's way more convenient than the device that you're currently using." The other benefit was the way that the dosing works, they could increase the strength of what I was getting, if I continued through the trial. They have these little capsules and they have different dosing in them. So, you can alter those with your doctor.

Again, I was doing everything I could to stay off the pump. I was like, "Hey, I'll give it a try. It can't hurt." I started that about a month ago, maybe a little over five, six weeks. The study itself is three weeks, so I'm technically done. I'm in what they call the extension phase. I go in every four weeks and I get a new batch of medication and devices. Really, my goal is that I'm kind of back to where I was before I started feeling a little icky with my simple, normal activities. I'm hoping to just postpone anything else, anything further for as long as I can. I was kind of hoping for a year or two if I can, but as long as I can. I will say that I feel, and my [6 minute] walk kind of shows, that I'm basically back to where I was before I started feeling bad again. Right now, it looks like everything is doing exactly what it's supposed to be doing. So, I'm pretty happy with it.

Obviously, it's a very personal decision. You want to talk with your caregivers, family, your doctors, to what their recommendations are. I think trials are amazing, because how else are we going to make progress in fighting this illness if we don't help each other and learn, and be a little bit of guinea pigs. But, I think that's how we make progress with drugs in our country. So, somebody's got to try it. If you're able to, I think it's amazing. I know there are people that struggle with the cost of our medications, and this is a fabulous way of also mitigating that. Since I started this trial, I'm not paying for Tyvaso coming through the trial. Obviously, my insurance will still cover it, but it's nice to know that it's coming.

I have a really positive outlook. I think that people are doing great things in science every single day. So, do what you can. There are so many more medications than there were years ago. Try anything. Try them all. Trials are so beneficial. If somebody is willing to give it a shot, talk to your doctor. Also, I know that not all medical centers are participants in studies, but if you're able to travel to a bigger center that does have studies, look online. As you're searching for clinical trials, the website phaware.global also has a clinical trial searching matching engine that you can use. Definitely give that a shot and see if you can find something in your area that works for you. They're worth it.

I am Jennifer Stone and I am aware that I am rare.

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