I’m Aware That I’m Rare: Stacey McCarthy (393)

The phaware® interview

In this episode, pulmonary hypertension patient, Stacey McCarthy discusses her 13 year journey with PH and her struggles as a single mom. Now over a decade later, Stacey is a coordinator for the UCSD PH Support Group, is involved in a long-term study with the NIH and is a patient advocate for Janssen.

My name is Stacey McCarthy. I live in San Diego, California. I am connected to the PH community as a patient. I’ve had pulmonary hypertension since 2009, so for 13 years.

I was a waitress for many years, starting in 2003 all the way up until 2009. I made a career change and it was more of an at a desk kind of job. That’s what I really noticed that something was different about my breathing. I just connected it to the fact that I had gone from being very busy and running around a lot to being more sedentary. I ignored it for about a month and it just quickly progressed to the point where I could not even roll over in bed without gasping for air. So that very next morning when I went into work, I saw the human resources lady and she took me to the emergency room.

When I got there, I was really concerned because I was not going to have medical insurance for about a month. I wanted to make sure that they did the minimal amount of testing for financial reasons. The doctor suggested a chest x-ray. When they did, he pulled me over and showed me the chest x-ray. My heart was severely enlarged, so I went straight to the emergency room and was actually diagnosed that same day. I’m very lucky. I went from feeling crummy in January, to being diagnosed towards the end of March, so just in two and a half short months.

Well, when I was admitted into the hospital so they could do all of the testing to diagnose me, I was only 37 years old. As a single mom, I raised my son since he was two by myself, and he was 16 at the time. I feel I was very naive at that time about my health, very naive to what they were telling me. When they come back and they tell you that they’re going to run this test and that test, it just goes over your head. I don’t know if that’s because of being so naive or if it’s because I’d never heard of any of these tests before.

They came back and told me that I had pulmonary hypertension. Again, it just went right over my head. I just looked at the doctor and I said, “Okay, well give me some medication and send me on my way.” That’s when he got a little more serious and said it was something that I needed to pay closer attention to and read about. He came back with about five or six pages that he had printed off the internet. I don’t even remember reading them to be honest, and it still had not set in to the severity of what I was going through.

They did not put me on any medication at that time. I was diagnosed by a pulmonologist and he really pushed me to go to the University of San Diego, UCSD. They kept me for about a week. I went home for a couple of days and then went back and was admitted into UCSD, and that’s when they put me on some oral medication and diuretics.

I believe that we have a higher power. The job that I had decided to go into being a desk job, I went to it because they had benefits, because they had paid vacation and sick leave. This company is a very family driven company and they completely supported me. They allowed me to stay on as an employee, and keep me while I went through some disability. But I went back to work. I was diagnosed in March and I went back to work in July.

Again, I just was still in the mindset, “I’ll just take this medication, I’ll feel better, I’ll get back to work,” because I had a teenager at home to support. I started back to work in July. I felt pretty decent then. I think the diuretics getting the excess fluid off my heart and the one oral medication at that time that I was put on, I just attributed that I must be doing okay I was able to go back to my job in July. They actually even held a fundraiser for me to help me pay some of my bills in between that time. That was just quite a blessing because that doesn’t happen very often at all.

Being a single mom, especially having a boy, I always felt I had to be really tough. I had to raise a tough boy. So my son jumped in and started reading labels on food when we go to the grocery store to make sure it didn’t have too much sodium in it, and taking over things like taking out the trash and carrying in the groceries, things that he knew that I struggled a little bit with. But I was also very stubborn and I didn’t want him to do too much because I didn’t want to take away from his childhood. I just did the best I could to suck it up.

I even wound up taking a second job shortly after my diagnosis from feeling pretty decent. That lasted just for probably a couple of months, and then I started researching having pulmonary hypertension. Back in 2009, there wasn’t a lot of great stuff to read about pulmonary hypertension online. It put me in a pretty good depression. I’m not a depressed kind of person. I’m very positive and always try to look at the bright side of things. But when you read that you are going to die from this disease, it really can throw you sideways.

That’s when my son really stepped in. It’s still hard to talk about that without getting choked up. I still call him my angel on my shoulder. He stepped in and he would make sure to tell funny jokes, bring his friends over. They did a really, really good job at getting me out of that little spell of depression and back on my feet.

I’ve been involved in a couple of big studies. When I found out the resources that were available with UCSD and being able to participate in clinical trials, I saw that as a light of hope that maybe I would be the one patient that would respond just right to a new medication and it would help me feel better. The nurse coordinator for my pulmonologist there at UCSD, that poor woman, I bugged her. I called her almost every single day until she found a study to put me in. They did, and I was in that study for two years and was actually on placebo for those two years. That taught me a whole lot about just the whole process of clinical studies and what it takes for FDA to approve a drug. It was very eye-opening. I was grateful that that was my first study.

Just recently, I lost my dad to heart disease very unexpectedly, and I know that pulmonary hypertension is a little bit on a different scale. But for me because my heart is so affected from my pulmonary hypertension, for that to happen to lose my dad and have no warning, I really felt that it was time to get more involved. I always shied away from sharing my story for many years in the beginning. But I started to realize that if people could hear your story and I could help even just one person, just one patient, help them avoid feeling the way I felt in the beginning and going through depression, and being so worried all the time, if I could help one patient by getting more involved, then it’s totally worth it.

I had things start to fall in my lap, literally fall in my lap and it was a sign. So I am currently the coordinator for the support group at UCSD. We have a pulmonary hypertension support group and I am blessed enough to be able to help put those together and run those. Also being involved in a couple, hopefully new studies coming up. I also go to the National Institute of Health every year and they are doing what they call a natural history study. They just want to see me once a year so that they can gauge what happens to a pulmonary hypertension patient over the course of 10 years. That’s been really an eye-opener too in being involved in that.

And then I was contacted by Janssen Pharmaceuticals to help be a patient advocate, to tell my story with them. With them being such a big company and being worldwide, it’s really exciting that maybe patients can hear about my experiences with that particular company and have hope, and maybe even trust. It’s really hard to know what medications and what treatments to trust. So if they hear my story and that helps them, then again, it’s totally worth it. A lot of these things aren’t things that I sought out. They’re things that they sought me out. That’s definitely a sign, definitely a sign.

Pulmonary hypertension is a really, really strange disease. You don’t look sick most of the time. You’ll hear that from people more times than you’ll ever want to. Pulmonary hypertension changes every single day. I’ve never had two days alike. You can do all of the same things, eat all of the same things, take your medicine at the same time, and you still are going to have your ups and downs with pulmonary hypertension without any warning or any kind of prediction to it. So trying to keep yourself positive isn’t always easy when you have a down day. I call them a PH day(s).

Sometimes it takes being a little bit stern too with your family and letting them know, “Look, I’m having a PH day and I just need your support. I just need you to know that it’s just today and tomorrow might be better. So hang in there with me. If you can go grab the groceries today for me instead, that would be great.” Your family understands the severity of it and knowing where they can support you, that helps. You have to give them specifics. Most families are really, really great about that.

Also too, to remember that we’re right now in a really cool, pivotal time for pulmonary hypertension in the medical field. Just in 13 years, I’ve seen it change so much from having just a couple of therapies to having, I believe, more than 20 therapies that we can choose from to help subside this. But I also believe wholeheartedly that we’ve got a cure on the horizon. I think we are so close. I think that the medical field’s hitting on a lot of very important points, and if you hang in there and you believe real, real hard, I think that it’s going to happen. I think that we can all be involved in it. Just a matter of keeping your chin up until it does.

My name is Stacey McCarthy and I am aware that I’m rare.

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