Long Beach resident Ornah Levy joins the Elm Street Band and local businesses to raise awareness for the rare but deadly disease, Pulmonary Hypertension
In 2008, Ornah Levy was 40 years old and weighed 500 lbs. Something was wrong. She was working, exercising, swimming a mile a week, and had been religiously following diet after diet for about 10 years. Nothing was working. Doctors either shrugged their shoulders or scolded her for not being truthful about sticking to her diets.
She finally applied to undergo gastric bypass surgery to curtail the weight gain. It was during a pre-surgery cardiac stress test that her doctors received a shocking revelation.
The good news? Ornah had been telling the truth all along. (Take that - accusing doctors)! She had been following the diets…maybe too well (especially the liquid one- but more on that later).
The bad news? The doctors she was seeing had diagnosed her, but due to the rareness of her disease, didn’t realize that there were treatments that could help. They started her on oxygen, but continued to plan her gastric bypass surgery, which they believed would “save her from herself".
It wasn’t until they cut her open to begin the gastric bypass surgery, and biopsied her liver, that they discovered she wasn’t fat - she was swollen! So swollen, in fact, that her liver was engorged with blood backing up from her failing heart. The surgeon quickly cancelled the surgery and woke her up 15 minutes later to tell her she was “too swollen" for him to proceed.
Two weeks later, after going home hugely disappointed, she received an urgent call from her primary care doctor, who had finally received all the information about the cancelled surgery.
The good news: he had a plan! There was a specialist at UCLA who had a bed waiting for her in cardiac ICU. He knew how to get that swelling down.
The bad news: It was Thursday and she had a 90% chance of dying by Monday.
10 years later it’s all but a miracle she’s still alive. She now fights every day for two things: Her life, and to keep others from experiencing the intense pain she has gone through.
Oh yeah, she’s also hilarious and perpetually in unwarranted good spirits...
On Thursday August 30th, thousands of locals gathered at Marina Vista Park to hear the Elm Street Band rock the night away and to (knowingly or unknowingly) learn about and raise money for pulmonary hypertension (PH) - the rare but destructive and deadly disease that led to Ornah’s weight gain, lack of energy, and near death.
Why a concert at the Park? Ornah Levy has lived in Spinnaker Bay for 20 years.
“All throughout my 30’s I used to watch the boats go by on Thursday evenings but I was too sick to attend a concert. It wasn’t till I got my mobility scooter that we were able to go down there. I remember weeping. It’s such a wonderful thing - you think you’re in some kind of story book. Kids and dogs, and people drinking wine. I always hashtag #someenchantedevening now whenever I post about a Concert in the Park because that’s what it really is. An enchanted evening.
Sometimes it takes someone like Ornah, with such a truly unfathomable story yet incredibly optimistic attitude and gratefulness toward life, to realize how enchanted Long Beach evenings can be. The Elm Street Band dedicated “Somewhere over the Rainbow” to her and the other PH patients in attendance right as the sun went down over Marine Stadium. And I can guarantee you I wasn’t the only one with a few tears in my eyes as their harmonies rang out.
Ornah Levy is one of the only people I’ve ever met who is living in her “Somewhere over the Rainbow” … and the side she came from was a lot darker than most rains you and I have experienced.
Pulmonary Hypertension is a heart and lung disease that constricts the blood vessels and the blood flow between both vital organs. Even now with Ornah looking better and taking a lot of medications, the disease has no cure and is/will be absolutely fatal… at least given the current state of limited research
“I may look healthy but my body is essentially strangling itself from the inside out. I’m in heart failure as we speak,” said Ornah.
Obesity, in this case, is not a problem or even a part of the problem. It is just a very, very frustrating and noticeable side effect. In fact, technically Ornah and her fellow PH patients are not even “fat.” The word doctors use is swollen.
“When they biopsied my liver I had no cirrhosis and no fatty liver. That was their sign. A 500-lb person should have a fatty liver!” says Ornah.
So what led to all the weight gain? Fluid retention. Ornah over the course of her life, and increasingly in her thirties, was urinating less than she was drinking. And that builds up. To give you an idea, in the first day of her treatment of PH (which involves taking a lot of pee-inducing substances) Ornah urinated 18 lbs. of fluid in one day. Eighteen Pounds!!
She went on to urinate 118 lbs. in that first month in the hospital and a total of 300 lbs. by the end of that year. That’s more than twice the amount of the average adult human. That’s a lot of pee.
As Pulmonary Hypertension constrains blood flow in your body, a result of that is less blood flow to the kidneys which in turn means the kidney can’t do its job and filter out the fluid. You can see the problem of a doctor telling Ornah to go on an all-liquid diet and then yelling at her for cheating. Liquid, especially anything with caffeine or sodium, is just about the worse thing for a PH patient.
At the Elm Street Band concert and online at www.phriends4life.com, Ornah and her fellow fighters sell t-shirts with their symbolic zebra mascot on the front. The Zebra is there to represent the “rareness” of their disease. It refers to one of the most traditional teachings in medical school. Occam’s razor.
Occam’s razor says, if you hear hoof beats in the wild don’t assume it’s a zebra - because it’s probably a horse. In other words, the most common answer is probably the right one.
“Which is great and usually true,” says Ornah. “Okay but what if you’re the uncommon one? You complain, ‘Doctor I’m swollen and out of breath.’ The doctor says to go on a diet and eat less. 99.9% of the time they’re probably right. But what if you have PH?”
In the year after Ornah went on daily continuous IV treatment for her PH, she lost more than half her weight. In August of 2009, her boyfriend Jonathan of 20 years took her to her family’s favorite vacation spot Lake Tahoe - at 6300’ elevation, and she didn’t feel terrible. The medications were working!
A few weeks prior to their trip, she had seen this beautiful dress in a dress shop that she could never have dreamed of wearing. She tried it on just to see, and it fit. Ornah completely lost it and broke down in tears in the middle of the store. She didn’t buy it because it was an expensive dress, but just the fact that she could fit in the dress was the greatest gift she could ask for.
Unbeknownst to her, her boyfriend at the time snuck back to the store and bought the dress. He hid it and presented it to her in Tahoe on the day of their 20th anniversary - she promptly burst into joyful tears once again. That night, on a moonlit lake, he proposed!
Ornah’s website www.phriends4life.com is part of a greater 501C3 called “Team Phenomenal Hope” whose goal is to raise money for research and awareness about the disease.
Pulmonary Hypertension gets very little funding because it is such an uncommon disease. One or two people out of a million may have PH. But Ornah thinks that it’s a little more common than people think, the problem is that they just don’t know.
“I’ve diagnosed at least five people just through awareness,” she explains. “Someone thinks, ‘Wait I know a person who sounds like that.’ Unfortunately you need a PH specialist not just a cardiologist to have this thing diagnosed.”
Awareness in the doctor community is a definite problem as well. The average time it takes to diagnose PH is 2.9 years. The average time it takes a patient to die once he/she has it is 3 years if left untreated.
The more research and awareness going into the disease, the more common it’s becoming. Deaths previously attributed to heart disease and obesity are now being understood as Pulmonary Hypertension. A heart attack may be the official cause of death, but it turns out the cause of the heart attack is PH.
It’s not all completely negative. There have been many triumphs garnered from the research toward which Team Phenomenal Hope has raised funds. There are now 13 medications that treat PH and help patients live longer. There were none 25 years ago.
Surprisingly Viagra is one of the main treatments. Ornah laughs, “Yeah I take Viagra three times a day.” The drug was originally invented to help heart conditions but then turned into a million-dollar product once a certain other side effect was discovered in men. “It can actually be hard for some of our male patients to take Viagra,” jokes Ornah, “No pun intended.”
PH specialists are improving the life span of PH patients each day, but the focus is on diagnosing earlier and eventually finding a cure. At this point the disease can still prove absolutely fatal at any moment.
Three of Ornah’s fellow team members at phriends4life.org passed away this past year. The Elm Street Band concert last week was the first event Ornah had the courage to organize since.
Looking out at the thousands of residents enjoying their enchanted evening grooving to rock ‘n roll and enjoying the beautiful views of Marine Stadium, Ornah had the biggest smile on her face. “This is so cool, this is a million times better than just putting on another walk.”
During intermission one of the primary advocates for Pulmonary Hypertension research gave a speech. His name is Carl Hicks and he is a retired USA military Colonel. It’s been about 10 years since his daughter Meaghan passed away from complications related to PH.
Carl flew in from Washington just to support Ornah’s event. “You think of these crazy diseases as something someone else has or someone else’s daughter will suffer from. Until it happens to you.”
Carl fought tears talking about the pain he experienced with the death of his daughter. He now dedicates most of his life to raising awareness about this disease.
“I was always such a hard-ass, so cocky,” he admits. “Now I’m a changed man. Unfortunately, the price tag to that was my daughter.”
The strong military man from Washington stood there alone in Long Beach full of tears as a Johnny Cash classic filled the air and the residents of Long Beach danced behind him.
For Ornah, raising awareness to thousands of her neighbors in Long Beach while having Carl there for support and the Elm Street Band playing her favorite renditions of classic rock, the night of Thursday, August 30th, 2018 became one of the best nights of her life.
She will continue to march forward with her branch of Team Phenomenal Hope and strongly encourages everyone to visit www.phriends4life.org to learn more, support the cause, and buy an awesome zebra t-shirt for $25. All funds go directly toward research.
Special thanks to the Elm Street Band, Councilwoman Suzie Price, and the rest of the sponsors:
BJ’s Restaurant & Brewhouse
Garden Grove Nissan
Toyota of Downtown LA
Original Hambones BBQ
Ole Tyme Ice Cream
Buffalo Wild Wings
George’s Greek Cafe
Trader Joes - in The Marketplace
Ornah’s Outlook on life:
“We’re all dying - terminally ill patients are just more aware of that fact, so: CARPE DIEM!”
Ornah’s hero: “Founder of Team PH, Dr. Patty George, who races in extreme sporting events to raise awareness and research funds for me. She couldn’t be at my event because she had to work a 24 hour ICU shift before heading to a big mountain bike race, which she completed as ‘My Lungs!’ I draw much of my strength and inspiration from her. :)”
Learn more at teamphenomenalhope.org.