Our Journeys

"I was a hairdresser NOW I am SOB – that is short of breath. Love life, don’t let life love you."

-Jaclyn Burdick

Patient Story

Jaclyn Burdick

June 2011

My journey started about three year ago when I learned I had a blood clot on my left lung. I also was told about twelve years ago that I had asthma.

Anyway, I am on Tracleer and Revatio. I am on oxygen at night and oxygen when I am active, which is all the time considering I have two grandbabies that LIVE with me that I take care of. I also have a little grandbaby that’s just about seven months old who came in to my life. That is why I still go the way I do.

I have PH days and good days. Lately, THEY seem to be long PH days. I will explain. For me, PH days are waking up and trying to get myself up to take a shower. When I take a shower, sometimes I am out of breath before I even get out. I make myself get going and take all my pills. Then I take the girls to recreation or school – they only are five and three. When I do that, my body says it’s time to lie down, but I can’t so I struggle to do more. Sometimes my tears are there to remind me that I have to do this for them. Yes, the days are long, but at the end of the day I see the girls smile and I don’t think of myself. I see me in there smiling. God blessed me with them.

On good days, I am ready to just do anything like my energy just kicked in to high gear. So, I do everything that fast. Well, maybe later on today I am just going back in to the PH days again. No, this is no fun, but I will make it to see my babies graduate. It’s hard to be positive but, YOU HAVE TO! I was a hairdresser NOW I am SOB – that is short of breath. Love life, don’t let life love you. Make like everything about everything and everyone. You will love yourself more too.

 

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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.