Life has more or less calmed down into a rhythm that is more or less like it was in early January before my hospital stay. Aside from my dependence on supplemental oxygen, the tube that goes with it, and my feeding tube, things pretty much are how they were.
When I was admitted and they said it was time to get evaluated, it still seemed like it was unnecessary because I had just been hiking with no air tanks. Then the realization hit me that “this is what it feels like” when “it’s time.” For months, and years at times, it just seemed like getting older or a bad month or day. Then we fixed my heart last January and thought things would get better. Then the stress of a second adoption was over.
It became apparent that I was out of excuses for feeling this way and, while 30% lung function wasn’t my transplant trigger, 23% was.
Now it feels like I’ve hit a new normal while waiting for The Call. More and more we have a normal routine day with a regular schedule we have grown accustomed to over time, kid-adjusted, of course. I no longer get up at 4:00 but sleep until 5:30 or 6:00 most mornings. I’ve caught up on sleep because I no longer need an afternoon nap to function or stay “well,” but that doesn’t make me immune every day from falling asleep on the couch after dinner. Regardless, it’s way less often than it was in March and April.
Most weekdays I’m at my desk for 6-8 hours, but work has dried up, so I’m slowly working on long-term business projects that will help when I’m back. I take breaks when I want and watch streaming movies at my desk. When work does pop up, I get it done and that extends our window a bit. One client is ready to hand me something with a rush tag next week, so that will be fun. My skills are once again honed, unlike what they were when I got back to my desk in March.
Lest I feel like life is still business as usual, I still get knocked around if anything happens to my oxygen. Yesterday I went out into the garage on room air only to re-connect a car seat using the quick-connect hardware. The belt was short enough that I had to get up into the seat and bounce on it with my knee in the seat to get it to click into place. I knew while doing it I was getting into trouble. I stumbled inside and grabbed my air and laid on the tile floor like a fish on the beach.
Yeah, just in case I thought I was okay… no, there is still a knife’s edge to be walked. Things are fine under certain conditions. I must stay within those certain conditions. Vigilantly.
Last post update
Moments after I published last week, my phone buzzed with a message from a relatively new friend (I’d only had his phone info for less than a month). He was asking what they could do for my wife to recuperate and recharge. After throwing out ideas of what she likes and can/can’t do, he said to hang tight… she’ll love it. Well, they got her a spa day for Mother’s Day! She’s never done a spa day, so it was perfect. Now she just has to choose when to go — pre- or post-transplant. I think she should go ASAP because once I am home, I’ll quickly be surpassing how I can help now.
The list is growing and shrinking. They’re doing a lot of transplants recently. One CF person we’re following got her call on Mother’s Day after two previous dry runs. Very happy for her… as she’s already doing laps and will probably try some today without the walker. Her sister reported doing 800 feet yesterday.
Mother’s Day was hard for us. Not sure why, but despite my belief that I have learned patience and was satisfied to wait for perfect timing, I got it into my head that we’d get the call on Mother’s Day. Celebrations, drinking, distracted drivers, etc. — I guess I just believed my phone would ring and there was no reason for it not to. So after a fun day, I came home sad.
Now it’s official: I’m done expecting the call at any given point. This isn’t my script and I’m not calling the shots. When it’s time, we’ll rock and roll.
I don’t know what was in our baked potatoes last night, but we laughed so hard at dinner. Things that Boy said were funny. Things I said had my wife laughing until she was red and I saw a vein on her forehead. That was a first. I didn’t know there was a vein there. i knew I should have written down what I said that was so funny so I could share it.
I think that Boy liked that we were still able to laugh so much with all that’s gone on. I know I liked it.