Ornah and her husband JonathanCaregiver Shout-Out!

This Shout-Out goes from pulmonary hypertension patient Ornah Levy to her fiance and caregiver Jonathan.

Jonathan has taught me the true meaning of love. He has been with me through the thick and thin – literally! When I weighed 500 pounds, he helped me get up, shower, walk, and get in and out of the car. He drove me to doctor appointments and spent every dime and all his available credit he had to save my life. He never once complained about it. He did all of this while working full time and taking care of pretty much everything. I spent nearly a decade on the couch, not being able to work or do much of anything. Through it all, there was Jonathan. Even when I went to have my gastric bypass and they discovered I was full of liquid, not fat, Jonathan was there to hold my hand. He sat for hours in various hospital rooms with me, staying up all night, and driving home at 3 AM with just enough time left to get a few hours of sleep before going to work. 

When I found out I had PH and had to have a PICC line in my arm, it was Jonathan who learned how to mix my medications. He mixes my Remodulin® every 48 hours, doles out all my oral medications and reminds me to take them, loads and unloads my scooter when I need to take it somewhere, lugs all my stuff around for me, drops me off at the front door when I am too short of breath to walk, and walks with me when I am able. When I first started walking again, he would ride alongside me with my scooter with my oxygen container in the basket so that I could walk as far as I wanted and then get on the scooter to rest. Then I would ride the scooter while he walked!

It was Jonathan who insisted we attend Conference in 2010 and get involved with PHA and it is Jonathan who is often on Facebook giving out advice on managing PH, or mixing meds, or caring for PICC lines. Three years ago, I never would have guessed that someday I would be able to walk three miles. When I approached the finish line at the Stanford PH Walk, a 3.1 mile walk, it was Jonathan who ran ahead to get them not to take down the finish line until I crossed it. Though I never imagined being able to participate in a fashion show since I have weighed over 300 pounds for many years, I was a part of my very first fashion show at the 2010 PHA International Conference. Jonathan was there smiling, taking pictures, and cheering me on.

Jonathan has done all of this, and we’re not even married yet.

So thank you, Jonathan, for standing by me through thick and thin, for pushing me to walk further, for supporting my efforts to live my life to its fullest!  Thank you for being 100% in MY corner, always.  You are the wind beneath my wings.  I love you!

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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.