In Honor of Emily

I don't even know where to begin. 

My dear friend Emily Haager lost her battle with CF 

on Saturday May 1.

When I heard the news, I was stunned and overwhelmed to the point of curling up and hiding in my hospital room. This can't be true, no not Emily, I still can't believe it. It took me days to process what had happened. It was even more surreal because I was in the hospital, just 2 floors below her. I finally feel that I'm in a place to write about her and my feelings of her untimely passing.

Emily and I go back probably 8-9 years. We were both patients at CHOC and I met her when she transitioned over from peds @ 18. She began attending the Family Education Days, picnics, and the other events our clinic held. She was at first shy, but she soon opened up and we exchanged our CF stories, our common bond. We often saw each other at clinic and caught up with our lives. 

We were both invited to speak on an adult panel at CHOC clinic Education Day. We told our CF stories and answered questions from parents of CF kids. These events really gave us time to socialize and get to know each other better. After years of attending our Ed days, our clinic discontinued seeing the adults as patients and we were told to transfer to an official adult clinic. We both ended up at USC, and again, saw each other often. We laughed that we were on the same 'sick' schedule being admitted at the same time and having our follow up clinic check ups the same day.

 

Emily's story is one that not only is heartbreaking but also a wake up call to me how quickly CF can take an unexpected, ugly turn. She was extremely active, compliant, and always on the go between being a college student, working, involved with church, CF and just living and loving life. Emily was also the CF ambassador for Pipeline to a Cure, surfing, fundraising and raising CF awareness. Last summer her FEV1 was in the 70s and she was well. 

 

She contracted H1N1 in October and admitted to the ICU at the same time I was in for a tune up. We emailed back and forth, she was very sick, but eventually got better. By Christmas, she was very sick again and shortly after diagnosed with MAC, Absessus. She came to me, knowing I had MAC 10 years ago and beat it. She wanted to hear my experience and treatment for MAC. 

 

In late January we were both at clinic and she told me that she was being admitted for another exacerbation and to begin MAC IV treatment. Within a couple days, she had a severe reaction to Colymycin IV that shut her kidneys down. Dialysis began as her kidneys slowly healed, but the many weeks of hospitalization took it's toll and she ended up on a vent as her lungs began to fail. She had been making some baby step positive progress, but one thing after another happened and her body finally gave up after 3 months in the ICU.

 

Emily had an incredibly supportive and loving family who was by her side 24/7. Their unending faith gave them the strength and tenacity to be there and help her in any way they could.

I take deep comfort in knowing that Emily is in a much better place, breathing easy, free of suffering, and in the arms of the loving Lord. A wonderful place that someday I hope and pray, I meet her again. Rest well, sweet Emily.