Life is not a controlled experience whether you have a chronic disease like CF or not. But, as human beings, we desperately try to control all aspects of our lives. This is as true for me as for anyone else, and maybe more so under the circumstances.
I am and have been compliant with my care most of my life. However, I admit to having skirted the limits a few times. If you or someone you love has CF, you know that everything can be going well, and then suddenly it all crashes around you. This happened to me pre-transplant, when I was still working for a clothing company. I’d flown to Phoenix, AZ, to lead a training seminar. I’d been spitting up bits of blood, but I wasn’t really concerned, because it had happened before and had never been a big deal. I went to dinner the night before with the buyer for the store, and he commented about how bad I looked. I told him I just had a bad sinus headache. We finished dinner and I went up to my room to sleep.
About four in the morning, I woke up to a familiar gurgling in my chest. I knew it meant one of my lungs was bleeding. I wasn’t overly concerned. When this had happened before, I would spit up some blood, the bleed would heal over, and that would be that. This time, however, it didn’t stop. I coughed and coughed until blood was splattered all over the bathroom.
Finally, I managed to phone the front desk to ask them to call an ambulance. So then, there I am at the hospital, getting x-rays, and having other tests done. I’m still bleeding, but not as badly as before. In the middle of getting all the tests done, I realize it’s now only an hour until the seminar is to start, so I get up and call the store buyer. Here I am in the hospital, bleeding, and I’m worrying about work.
I still didn’t tell him what was really going on. I did, however, ask him to go by my hotel room, which, fortunately, had been cleaned, to get my clothes for me.
Still, I didn’t have enough clothes for the two-and-a-half weeks I would be in the hospital, and I wasn’t about to lounge around in a hospital gown. So, in between treatments and I.V.s, I snuck downstairs and caught a cab to a mall, where I went shopping. When I returned, a friend had come to visit and told me that the nurses I’d so carefully avoided, when sneeking out, had told him I’d left to go shopping! WTH? How did they know? Busted.
The point of my sharing this absurd (but true) story is that, as I said before, life is not a controlled experience. I’d been compliant with all my therapies and exercising like always, but, out of nowhere, this happened anyway. Events like this happen to all of us. Rather than scaling back my activities out of fear of another bleed, I chose to be more aware of even small bleeds, keep up my therapies, and step up my exercise. Life may not be a controlled experience, but we can’t live in fear of what might happen. We must keep living life forward.
Quote: “Well they took me to the hospital, and I swore I wouldn’t go.
My blood was running much too high; my heart was much too slow. T
he doctor had some questions, some things he had to know.
My baby shook her and said, ‘The boy’s got no control.’” ~ Eddie Money