It has come to the attention of my medical team that I am indeed at end stage CF. I've had quite a startling drop in lung function in just 7 months. My new normal is around 30%. I keep walking around the house thinking, "This is what dying feels like? But I feel so normal."
Yes, this is what dying feels like. When your life is consumed by eating, sleeping, treatments, tubes, cords, IVs, and lots and lots of oxygen tubing to trip over.
In my small little house we've set up two compressors. I finally bit the bullet and bought a second one, a Sequal Eclipse with AutoSAT technology, as it says so on the box, so I can keep traveling over night, as long as my needs don't exceed 3LPM. When Paul signed for the package, for the first time ever, the UPS man commented on the delivery. He said, "Here's some kind of satellite." Paul didn't correct him, as the UPS man was 10 brown boot steps from the door by then.
The oxygen helps me keep my breath and I notice I can yell louder to the kids or my husband when they're not in my room and I desperately don't want to get up for the bazillionth time and drag my tubing behind me getting caught up every two feet on something in my way. It also helps lower my heart rate. Even when my lung function was good, around 42% and life was hard, really hard, because I was keeping up with the Jones', my resting heart rate was really high. It went from 80-90 to 110-120. And when I do stuff it's in the 140's and 150's.
Apparently there are only so many beats to a heart and then you die. So we are doing oxygen therapy so my heart, which is currently in good shape, just high, the oxygen slows it down by about 10-30 beats per minute. So as I sit here typing to you, my HR is 98bpm, vs over 120. That's good news! The oxygen is working.
So this is what dying feels like. I'm not in any pain at the moment. I'm not even short of breath really. But I feel tethered to my oxygen and I can only stay awake for so many hours before I collapse in a puddle of nap goodness on my bed. I can honestly say I have felt worse, way worse, many times before. My doctor seems pretty certain that I'm ready for transplant evaluation. I never thought I would be here at the age of 37, when at the end of December, I finished IVs, I was 36 years old and my lung function (FEV1) was 42%. I've never taken a steep dive like this, and it's all been because I have been hit by two viruses, one strong in January, one weak in June, and extremely pan resistant pseudomonas aeruginosa filling my lungs.
My kids are handling the new tubes great. They are always asking me if there's something they can do for me. I love that. I think they just like the fact that I have no energy to watch them so they are watching TV all day. That will end soon, as school starts on Monday!
I once heard a startling fact on the internets, so you know it must be true. 50% of CFers die before they reach age 37. This is a fact in 2013. But the startling fact was 5% of CFers live to be 40. When I was feeling "so good" at 36, but life was hard, so hard, I had calculated that I had 8 years before transplant evaluation. I have always ALWAYS declined at a steady rate. I have classic Cystic Fibrosis. Not this year. Not when I'm past the median age. Not when I've been kicked down by one too many viruses. Just colds. Maybe a flu in there. Who knows. If all goes according to plan, I hope to be transplanted in the next 2 years and then maybe I'll live for at least 10 more.
I'll leave you with happy faces from last night. Aren't they beautiful? Paul and I made those!