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.
Stay up to date with the latest on Coronavirus Disease 2019 at the CDC website
Click here for Important
COVID-19 Information & Resources
for PAH Patients & Caregivers from the phaware
website.