Monday, May 30, 2016

What CF Means

I learned shortly after we began dating that Elias had Cystic Fibrosis. Back then, it didn't mean a lot to me. I knew about his treatments and medications, but in many ways it wasn't really real. He was just like any other teenage boy.

Then we got married and CF meant financial struggles. Jobs that only offered part time health insurance. Insurance companies that wouldn't pay for life saving medications, struggling to figure out how to pay or get assistance for his healthcare needs and draining our savings. It meant learning more about his meds, nebulizer treatments and therapy vest. It meant quarterly checkups with his specialist. It meant infertility with the choice of IVF or adoption. It meant that when we decided that we were being called to serve as missionaries in West Africa that we would need a house with the luxuries of electricity and a refrigerator so that we could keep his meds cold and use his nebulizer and therapy vest. Some of these things were really hard and some were just inconveniences.

Now, nearly 8 years into marriage CF means something else. CF is progressive and Elias is getting older. Now 30, he's getting close to the average life expectancy of a person with CF. CF now means PICC lines and IV antibiotics at home, possibly once a year or more for at least two weeks at a time. It means hospitalizations and learning how to advocate for ourselves so that he gets the correct care the first time. It means talks about work from home options and learning more about disability so that we are ready and understand our options when that time comes. It means fear and worry about the future or even just tomorrow. It means that I need to make sure that I can step up and support our family financially if he can't. It means that things can change quickly for good or bad. It means that some years might be better than others and that his health could even improve and he could be healthier and stronger than ever. It means that our wedding vows become more true than ever "for better, for worse, in sickness and in health".

May is Cystic Fibrosis awareness month. If you would like to donate to research toward a cure for CF, you can do so here:

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