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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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Susan Summerfield - phaware® interview 326

May 12, 2020

COVID-19 SPECIAL EDITION:  Susan Summerfield is a pulmonary hypertension patient and retired airline stewardess. In this episode, Susan discusses her diagnosis, having to retire from the airline industry due to PH and how she is coping with self-isolation due to COVID-19 #phaware  

My name is Susan Summerfield. I'm originally from London, England. I'm 68 years old. I have PAH. It was first discovered in 2013. I was a flight attendant for 45 years. 

I had doctors who kept saying to me later on when I had PAH that really, flying was not the best job, especially with a lack of oxygen. I passed out. I had never passed out in my life, and I passed out. That was basically the beginning of the end, so I had to retire. I'm on medication. I'm much better now that I'm not working. I sort of move along day by day, do what I can.

I passed out in 2018, but I hadn't passed out up to that point, but I think I was on the wrong medication. I had been to the Mayo Clinic for something totally different. I have severe neuropathy in my feet, so I find it hard to walk. At the Mayo, they said, "You know what? You've got PAH, we think we're going to send you over to the cardiologist." I didn't go up there to see a cardiologist, but anyway, off I went. [The specialist] mentioned Uptravi, but he hadn't put me on it. I was on a different drug. I kept trying to call the nurse and say, "You know what? I don't feel well. I don't feel well. There's something wrong."

I think just one day I was sort of coming out of the store and bang, down I went. Then I was put in hospital, where they immediately took me off this drug. Just by coming off it, I felt 100 times better. Just like that. That's when they introduced me to Uptravi, and I've been on Uptravi ever since.

I've know there's many medications out there for PAH. You've got to find one that actually works with your body and helps you. I know it depends on the severity of your PAH. Luckily I'm not on oxygen, I can't walk a mile, but at least I haven't progressed to a further stage, which I'm very grateful for.

I was very fortunate to be able to have my job with two different great airlines and be able to travel all over the world. I'm very fortunate and very lucky. When I was diagnosed with PAH, I went to the University of Washington Medical Center in Seattle. They have a pulmonary disease department. They told me, "We're going to have a finger monitor and make sure that your oxygen levels don't drop." But once you're in the air, of course, your oxygen levels will drop. Sure enough, my oxygen levels were dropping. Down to about 90, sometimes lower. So it was always a concern for me and I thought, "Oh, this is not good."

Flying's okay when you have to go from A to B, but for me as a job every week, sometimes every other day, probably wasn't right. My doctor at the time said, "You know what? You really should not be doing this. Can they give you a job on the ground?" It's not that easy. It really isn't. To tell you the truth, I feel so much better with my feet planted on the ground.

I think flying is a ways to a means. I think patients with PAH should be aware of that. Don't make it a regular thing, just if you have to go, maybe, fine. If I don't have to go on an airplane now, I won't just because I know it's not good for me. I always ask doctors, "What can I do to help myself?" He said, "Don't become a couch potato." I've never forgotten that and I keep active as much as I can. It's very important, especially with Uptravi.

As you're probably aware, the side effects of Uptravi can upset your tummy and different people have different symptoms. I always say, "Eat healthy." You have to really be very aware of what you're eating and [eat] as healthy diet as possible. I don't have much appetite. I have to remember to eat.

Having the healthiest lifestyle that you can. Get out as much as you can, exercise. If you could walk, great. I have a problem walking, so I have to walk with a stick unfortunately now, so walking is hard for me. Just listen to your body. I think that's important. I think you have to listen to what your body needs. Sometimes you have bad days, don't push yourself. Go sit down and put your feet up and rest. Swelling of the ankles is a problem with this disease. If you feel that something's wrong, just go and sit down and put your feet up, elevate your feet. Listen to your body, do what it tells you to do.

I think about my friends who are still flying, especially during this hard time and having to deal with COVID-19. [I hope] if they are having to work, just be extremely careful and follow the CDC guidelines. 

Well first of all, I think with this disease, of course you're high risk. I've been hibernating in this house and I don't like it. I like to go out and I like to do things, so it's very hard. You know that you are vulnerable. I would just say that if you go out you wear a mask.  And constantly wipe things down. Surfaces. In general, just do everything that you should be doing. I wash my hands constantly it’s what the CDC are telling us to do. We'll get through this together, and come out of it a better world, I hope.

My name is Susan Summerfield and I'm aware that I am rare.

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