OUR JOURNEYS

Patient story

Brittany Evans

I was 22 with a budding career as a pastry chef. Of course, cooks never make much money so I had been working two jobs, roughly 60-70 hours a week. I baked in the morning and hosted at night. At one point both jobs had stairs I would go up dozens of times during the day. I noticed I would get out of breath as I ran up them and cursed myself for being so out of shape. Eventually I couldn't even walk up them without stopping to catch my breath at the end. I assumed that I must have baker's allergy, a fairly common allergy that comes from breathing in flour on a regular basis. After several visits to the allergist, I was told I had no allergies and was simply anxious. I believed them.

Right around my 23rd birthday I started a new job. It was a salaried pastry chef position that paid well enough that I wouldn't have to work two jobs! What I didn't realize is that I would still be working close to 60 hours a week. After a couple weeks of work my symptoms rapidly got worse. I could hardly make it up the stairs and had to rest regularly. I went to the emergency room one night after hyperventilating just trying to make dinner. I was told my x-rays and EKG were normal (they weren't) and was sent on my way.

Over the next few months I averaged two or three doctor’s appointments a week, never missing a day of work. I moved from specialist to specialist, all of them telling me I was anxious or stressed, that I had a hole in my heart that no one would find. After giving up on supposedly the best cardiology department in Atlanta, I was referred to another cardiologist by a friend of the family. He gave me an exercise-stress test, the one test I hadn't done. Three minutes on the treadmill and my entire body turned blue and I passed out. I believe my oxygen levels were in the low seventies. I was finally diagnosed.

After being diagnosed, I found the PHA site and hunted down one of the two PH specialists in Georgia. Two days later I was having a right heart cath which got me admitted to ICU to start Flolan later that day. My doctor told me I should not have been able to stand on my own. I had worked two 16 hour days the two days before. My pressures were 120 and my symptoms were stage IV. For some reason my heart was not as strained as it should've been, and that was keeping me alive.

My first day back to work, I was fired. I was told that I was not allowed to use all my sick time at once. I was now unemployed and on $400 a month COBRA insurance. Flolan worked well for me for the first few months. Eventually the side-effects surpassed the benefits and I kept getting line infections. I was in the hospital for a week when they finally decided to pull my hickman and replace it with a picc line. After that my 103.5 temperature finally subsided. Unfortunately, the angry staph infection had not been killed and found its way to my picc line. Another severe infection which caused a blood clot ensued. After this much trouble with lines and ivs I was transistioned to Revatio. In the next couple weeks another med will be added.

Throughout all this, the messages boards were my savior. Every little stress and side-effect I had, someone else had already been there. They also supported me as I gave up kitchens for unfulfilling temp jobs. I kept looking forward to the conference, where I would finally get to meet my friends.

The conference was everything I ever hoped it to be. I finally met girls my age going through the same things I was. I met survivors who had been going through this longer than I had been expecting to live. But most importantly, I met my message board friends. There was lots of excitement as we explained who we were and our message board names. There were cheers with recollection of stories, especially with NuLungs, our transplant success story. I felt like I had known these women my whole life.

I am more optimistic than I was six months ago, even after losing my career, friends, and many of the things I loved to do. I want to tell everyone about PH, get everyone involved. It doesn't seem like such a selfish act now that I know others struggling just like I am.

 

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NORD

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.