Breathing Deeply: My Life With Cystic Fibrosis

I don't know where to begin. I guess I'll just say that I'm hurting right now. I just got the news that one of my cystic fibrosis pals passed away. It's surreal now to read her last blog post. Only 5 days ago she was writing about how she felt that she was getting back on track. She felt tired and worn out, but overall encouraged. She was especially looking forward to being a part of the Tobramycin Inhaled Powder (TIP) medication study.

Only 5 days ago her lung function was beginning to improve. Only 5 days ago she felt she was at least starting to be on the mend. Then her oxygen saturation dropped. Her lung function dropped. Her coughing increased. She worried about sounding like she was whining about not feeling well. Just like a strong CFer--not wanting to complain about health.

I'm choking back tears and remembering how lively our last conversation was. She was almost always online at the same times I was. We craved the same snack foods and would often interrupt our IM sessions with "BRB, need snacks." My heart is heavy and I'm sure the moisture in my eyes is going to spill over my lids at any moment. I'm trying to do something constructive with my grief. I wrote a horribly insufficient note of sympathy and condolences to her mother. I read and re-read her last few blog posts looking for any clue that may have said she knew the end was near. Her second to last blog post was a lot about how she hoped she would go when her time was up. I suppose we should be thankful that her last hours were peaceful and she merely slipped out of this world and into the next.

My heart is breaking as I wonder what she's seeing in the next life. From what I knew of her, she did not have a relationship with Jesus. That's the most tortuous thought in my mind right now. Only God knows what was in her heart. Battling cystic fibrosis is it's own sort of hell; I want so badly to know that her suffering has ended. I'm fearful that it has only just begun.

Five days ago she was flesh and blood, interacting with the world around her.S he shared her wit, her smile, and her love of shoes with all of us. And like that...she was gone.

It's now late evening and after a good cry over losing a friend and letting my husband hear my fears about my own mortality, I've decided to honor Debbie's memory by sharing a little more about her. Here's just one example of her sense of humor: the image she used to adorn her signature in all her posts at cysticfibrosis.com

She was always ready to send out the Welcome Wagon whenever new members joined at cysticfibrosis. com. Her hospitable nature influenced me to make sure that I was welcoming of new folks too. She didn't just do a "throw away" note that simply said "welcome to the group." She offered to open up and share herself with people so as to let them know that they were truly joining a support community. One of the things she did was take it upon herself to post a little "get to know you" questionnaire every so often.

Debbie had a quick wit. Some of my favorite online conversations were the times when she and 2 other gals our age met up in the chatroom on the website. We'd "ROFL" over just about anything. The later it got, the punchier we'd get. Eventually we'd all be coughing our guts out from laughing so hard. For CFers, laughter isn't just good medicine, it's good airway clearance! Debbie shared in my enthusiasm when I became the proud owner of "The Shoes." Those black patent leather Steve Madden peep-toes are the crown jewel in my shoe collection. She understood that.

We talked about deeper stuff too. We helped each other comb the social security administration's website in search of info about how disability benefits are applied to CFers. We griped about incompetent lab technicians. We encouraged each other to eat, eat, eat and breathe, breathe, breathe. I had only known her for 11 months, but I'll remember her forever.