When Rebecca went into respiratory failure it was not a surprise and it was DEFINITELY a surprise. What I mean by that is that someone with cystic fibrosis that has a lung function in the 30-40 percentage range is at high risk however up until even a few days before this, we felt like she had more time. Though our assessment of the specific date was off, our understanding of what was to come was unfortunately not. So as much as we could have or maybe should have predicted this, it was unpredictable.

At 37 years old, Rebecca was on the older side of people with CF. Months before her decline we discussed her cutting back her hours at work so not to push herself too hard. The fact that we even had this conversation suggests that we knew there was a looming risk. Fortunately, since we knew this we gave more thought to preparing for an eventual outcome.

When given the option through her company to purchase an added insurance if she became unable to work, we gave it serious consideration. We decided to opt in to their disability insurance (DI) policy even though Rebecca was healthy when we signed up. We had no idea of the decline we could expect in the coming year.

Over the first weeks of her time in the coma, I don’t think I thought about it once. However, when I began to realize that I might need to leave my job, I was thankful that we had it. It didn’t solve our biggest problems but it was definitely a relief when I remembered we had it. And when we moved up to Pittsburgh for Rebecca’s transplant, I’d already had to leave my job. The income from her DI helped us pay for medical care, a mortgage in Cincinnati, and our rent in Pittsburgh.

I’ve realized that I don’t need to be perfect at predicting things but it’s worth taking the time to think through what is to come and what may possibly help us through. If we can do that then we might be more prepared than we realize.