OUR JOURNEYS

Patient story

Ornah Levy

"I went from being able to walk 3 or 4 feet and having only days to live to being able to walk a mile and a half. Now I live my life freely and happily!"

Four years ago, I weighed 500lbs. I thought I was obese (and so did my doctors). I was swimming a mile to a mile and a half each week, and not losing any weight. Finally, I decided to have gastric bypass surgery. In preparing for the surgery, the cardiologist I discovered that I had an enlarged right side of my heart and had pulmonary arterial hypertension (PAH) but the doctors thought that I had PH because I was obese. The fact was they had cause and effect backwards! I was obese because I had PH!

The doctors continued to tell me I needed the surgery to survive, so I proceeded with the rest of the pre-surgery steps. Finally, I went into the surgery, they cut me open, and found me full of LIQUID! They could not do the surgery! They woke me up after 15 minutes, and told me they were unable to perform the gastric bypass that I had been told would save my life! I spent the next 3 weeks in the hospital recovering from the surgery that I didn't have. While there, I learned that the surgeon had seen my liver when he had tried to operate on me, and had biopsied it, because he thought I had cirrhosis of the liver! The biopsy came back negative for cirrhosis and no fatty liver (which, if I really had been morbidly obese, I should have had), but rather it was THE MOST SWOLLEN LIVER THEY HAD EVER SEEN! My liver was swollen because of the backup of blood from my heart! I emailed my pulmonologist after I got home, and told him what had happened. He contacted a specialist at UCLA (Dr. Rajeev Saggar) who was starting a two-week rotation as the head of the Cardiac ICU, which is where I had to be.

I was admitted through the ER at UCLA the next day, and my life began to turn around. Dr. Saggar hooked me up with my IV Remodulin, which is now infused into my body 24 hours a day. As soon as this vaso-dilation medicine started coursing through my veins, my heart-lung vessels began to dilate, my heart was able to pump more blood, and my kidneys were able to start processing out all the fluid my body was retaining! In the first month in the Cardiac ICU at UCLA, I peed out 100lbs of fluid!! In one day, we documented an 18lb weight loss! Once I was released, I continued peeing out fluid, and lost another 200lbs of fluid in the next 10-11 months!!! In one year - 2009 - I lost 300lbs of FLUID!!!

My life has changed dramatically since then! I went from being able to walk 3-4 feet, and having only days left to live, to being able to walk a mile to a mile and a half, and to living my life freely and happily! I have even been able to participate in some PH Walks! I walked 3.1 miles at the Stanford University PH Walk earlier this year!! (It took me 4 hours, and I was the LAST person to cross the finish line, but I did it!!) I have even started rowing with a disabled rowing group! They have rowing shells with pontoons that keep me from flipping over and getting my PICC Line wet!

I would like other people not to have to go through decades of misdiagnosis (and often death) prior to getting a proper PH Diagnosis. I would REALLY like the front-line "general practitioner" doctors to learn about PH (many of them have no idea what it is, or how to treat it), and I would especially like doctors to be made aware that obese people may not be fat! They may be swollen!! Live long, and prosper! :-) Carpe Diem! Seize the Day! Make your lives EXTRAORDINARY!! :-)

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.