I’m Aware That I’m Rare: Eric Borstein (485)

the phaware® interview

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. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com