Eric Borstein - phaware® interview 485
Sep 10, 2024
Eric Borstein, who lives with pulmonary
arterial hypertension, is walking from Los Angeles to San Diego to
raise funds and awareness for the benefit of Team PHenomenal
Hope.
On September 21st, 2020, while at home, he collapsed
from massive right heart failure and almost died. On
September 22nd, 2024, four years after his PH diagnosis, he begin
his 120+ mile walk for patients living with pulmonary
hypertension.
Learn more about his journey and this amazing event at WhereIsEB.og.
My name is Eric
Borstein. I'm from Brentwood, California, in Los Angeles. I was
diagnosed with pulmonary arterial hypertension four years ago this
coming September. It was during COVID.
I was sick. I wasn't going to the doctor. I have a team of doctors
now that I rely on, one of which is a psychologist, because I've
learned that you've got the physical battle with PAH, but then
you've also got the mental battle. Using a psychologist has helped
me get through the hard parts just with relationships and
everything else.
I was diagnosed in September of 2020. I was sick. I wasn't going to
the doctor. My psychologist made me very aware that upwards of 75%
of males don't go to the doctor. I got sicker and sicker. I was
showing swelling. I was showing swelling in my midsection and my
ankles. I'm very active, very athletic. It got to the point where I
couldn't walk 20 feet without being out of breath. I couldn't go
upstairs in the house without being out of breath. I was hiding. I
started wearing bigger clothes. I started working longer hours at
the office. I was hiding. It got to the point where I remember one
night I was lying in bed with my wife and she said, "I really don't
want to be here and wake up with you dead. You really need to get
to the doctor."
I was scared. I don't know if I was in denial. I wasn't seeking the
help that I needed. One morning, I was lying in my home office and
I just didn't feel good. I normally would have gone to bed and 12
hours later felt better, but I just wasn't feeling better. I
decided to walk upstairs to go back to bed. I got to the top of the
steps and everything just started closing in. It was probably the
longest 30 steps of my life, most painful steps of my life. I sat
down. I stood back up and with my hands at my sides just went face
down in the bedroom. One of my kids saw this happen, yelled out to
my wife who was downstairs getting our youngest son ready for
school on Zoom, like all kids were doing back then.
I was unconscious. Paramedics came. I'm assuming it was probably 25
minutes, 30 minutes later. I was dying in the bedroom. They got me
to the intensive care where I spent 16 days in the intensive care
unit. I was diagnosed with severe right heart failure and pulmonary
arterial hypertension.
I was stabilized in the hospital. I remember lying in bed in the
hospital and looking at my wife straight in the eyes. Back in
COVID, there was only one person allowed that was in the hospital.
She was there all day as long as she could be until she had to come
home and take care of the kids. I remember looking her in the eyes
and saying, "I'm going to beat this." I didn't know what that meant
at the time, but I knew that wasn't going to be it. I knew I was
going to fight, but again, I didn't know what that looked like. I
didn't know what that path looked like.
Unbeknownst to me, they told my wife that they didn't know if I was
going to leave the hospital. I was that sick. It turns out my right
ventricle was two and a half times the size of my left. It was
severe, right heart failure. I was immediately put on Veletri.
Veletri's a really, really, really hard drug. The side effects are
awful. I learned that walking started helping with the side effects
of the medication. At the time, I only could walk up and down the
hallway, but any little bit helped. I was going on 4, 5, 6 walks in
the middle of the night. I was stabilized. I left the hospital.
When I left the hospital, they told my wife I'd probably have three
to six months to live.
I came home on Veletri and again, started walking. I started
walking five houses down in the neighborhood, 10 houses down in the
neighborhood, a block, two blocks, three blocks. Before I knew it,
I was walking a mile, I was walking two miles, I was walking three
miles. As I was doing this and I'm going to the doctor, I started
to feel a little better. Next thing you know, a year later I'm off
of Veletri.
I was put on three drugs. The side effects are bad. The side
effects for these medications are bad, but I kept finding that the
walking was helping. It was really helping a lot. It was helping
physically and it was helping mentally. My head was clear. Between
diet, exercise, medication, doctors, I was religious, and to this
day, it's been four years, I've never missed my medication, never
missed a doctor's appointment. I've never gone over 1500 milligrams
in sodium. I've never gone over my allotment of liquids, because
I'm on limited liquids because I have fluid in my heart. I've just
gotten better and better and better.
I now average 15 miles a day walking. Walking's just become part of
my life. My heart is back to normal. My doctors say I have a
mid-twenties, fully athletic heart. I'm no longer diagnosable with
PAH, but I live with PAH. The doctors say if I walked into their
office without biopsying my lungs, you wouldn't know that I had
PAH.
I understand that I'm extremely fortunate. I'm extremely lucky that
I have an amazing family, an amazing support group, amazing friends
that I call family. I couldn't have done it without them. I have a
business partner who is just absolutely amazing and has taken on a
big load. I've been able to dedicate my life to my health and
getting better. I'm living proof that between all of these things,
there is hope.
I remember when I was getting treated, I was getting treated once a
week by a nurse who was coming and helping me redress my bandages,
because I was on a pump with Veletri. She had another patient that
went into the hospital the same time as I did, same diagnosis, same
severity, and she died five months later. It was partly attributed
to the fact that the side effects were so hard, she just couldn't
deal with it.
People say I make it look really easy, because I'm out there
walking, but it's not. It's hard. The side effects are very
difficult. It's not an easy battle, but it's a battle worth
fighting, because I've got three kids, 17, 15 and 11. I've got a
wife of 19 years, just an amazing family and friends. That's where
I am today.
We have a family foundation. When I was diagnosed with PAH, we
immediately started researching what organizations and hospitals
there were around the country that we could get involved with to
hopefully make a difference, because we don't know where my
future's going to go.
We found National Jewish Health in Denver. We started funding PAH
research there. I was introduced on my first trip back to NJH, to
Dr. Patty George. I met Patty. Her enthusiasm is infectious, to say
the least. I sat down with her and was introduced to
Team PHenomenal
Hope. Team PHenomenal
Hope’s mission, one of their slogans is, "Let me be your lungs,"
pairing people who can't exercise, who are having trouble getting
out of bed, who can't get to the doctor, who don't have the
resources for the medications and the therapies and the education,
it rang true because I was able to exercise and I'm able to do this
stuff.
One of the things that I've always wanted to do, and this is
another thing that I told my wife and I've told my friends, now
that I'm getting better, if I can help save one person's life or if
I can help motivate somebody to extend their life, then one day
when I'm not here, I've done my job. When I was introduced to Team
PHenomenal Hope, it just hit me. They're helping people through the
means that I'm actually doing on a daily basis. I told Patty,
anything I can do to get involved to help motivate other patients,
anything that I can do I want to do. I heard the story of Carl
Hicks, how he lost his daughter.
It meant so much. I had this idea in my head. I had this concept in
my head, why not walk somewhere to raise awareness? Through
conversations, I decided that whatever fundraiser I did, I was
going to do it for Team PHenomenal Hope. I want to be a
motivational speaker for them. I want to do events for them, not
only on the philanthropic side, but because I'm a patient because
patients can look at me for hope.
In 2022, I walked over 4,700 miles. In 2023, I walked over 5,000
miles. Between the two years, I walked over 10,700 miles. Actually
people in the neighborhood, they see me once, twice, three times a
day walking. Sometimes they'll see me in the neighborhood. Then
they'll see me down in the marina or they'll see me in Culver City
or they'll see me by LAX. They'll see me all over the place a
couple times a day. I've been now nicknamed, The Walking Guy.
We were actually just in Europe this summer. We were in Greece. We
were at breakfast, and a mother and a daughter walked up to us and
she looks at me and she says, "I just have to ask, are you from Los
Angeles?" I said, "Yes." She goes, "Are you from Brentwood?" I
said, "Yes." She said, "Do you live off of so-and-so road?" I said,
"Yes." She grabs her daughter by the arm and says, "Oh my God, it's
The Walking Guy." This was in Mykonos, Greece!
This has happened all throughout West Los Angeles. I'm with my kids
and people do this. So I decided I was going to walk from Los
Angeles to San Diego to raise money and awareness for pulmonary
hypertension. I am raising the money for the benefit of Team
PHenomenal Hope. We're going to put on an event the morning of
September 22nd in Santa Monica, along the bike path. It's going to
be a 5K walk. We're going to have some speakers. Then, we're going
to go out and do our 5K walk. Then, they're going to send me on my
way at the end of the event, and I'm going to start walking to San
Diego with the hopes of raising as much money and awareness as we
can for a disease with no cure.
I'm so, so excited for it. It's the first annual. It's called,
"Where is
EB?" The plan is for
me to walk from LA to San Diego averaging about 25 to 30 miles a
day. I'm breaking it up into segments. I'll walk 25 miles, sleep,
walk 25 miles, sleep all the way down the coast. I'm going to stay
as close to the coast as possible, with the goal of ending in San
Diego five or six days later.
My kids are in school. The plan is for me to end in San Diego on
Friday or Saturday so that they don't have to miss school. They can
come down. They can be at the finish line. I'm going to have other
friends and family down there welcoming me at the finish line.
Hopefully, they'll be nice enough to give me a ride home after the
amazing adventure that I've just gone on!
To learn more about this amazing event and my walk for awareness
for PAH, please go to whereiseb.org
or
www.teamphenomenalhope.org.
We would love your
support, love for you to come out and be a part of this amazing
day, this amazing morning and really kick this off for those living
with pulmonary hypertension that can benefit from Team PHenomenal
Hope. I hope to see you all there.
My name is Eric Borstein, and I'm aware that I'm
rare.
Learn more about pulmonary hypertension
trials at www.phaware.global/clinicaltrials.
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