Our process of preparation has begun already. I’ll write about preparing our business separately, but I did start signing up new things and moving services with an end-game in mind. Be that a failed transplant, missed transplant, or as I call it, “got hit by a bus protocol” because it could be any of our days any time we get in the car. I felt like this was necessary so my family would have some income for a while as they figured out how to sell the business or clients to my friends.
The current status of the household is still simmering somewhere below freak-out. My wife is still a bit freaking out about me and the boys, I’m freaking out about the business, and the boys are freaking out about things feeling different. The good news is that our families have really come together to support us even while we adjust to the news and I adjust to life on oxygen.
For example, my sisters-in-law took the boys to the park Saturday. I could tell my wife was still stressing about the state of the house’s cleanliness after so many days of me in the hospital, so I sat on the bathroom floors and cleaned the toilets and sucked on O2 and listened to podcasts… and she felt much better about the house. Just as we finished, the girls texted and asked if we had dinner plans. We were going to have our bacon and orange slices night, which must have sounded pitiful (but we really do like that dinner) so they went to the store, fixed us dinner, and cleaned up and put the boys to bed.
Can we just say how awesome that is? Yes… it was awesome.
This week, our moms are here helping with the baby and making a family master list of things that will take stress and to-dos off our plates. My mother-in-law is our “agent” for the process and is spearheading the distribution of tasks to interested parties who can help. Her primary goal is for my wife to be of sound mind through the whole thing (since she is her mom’s daughter) and for me to be at my peak health possible (awesome that she cares so much). No wearing me out living our normal life allowed while I’m at such a physical disadvantage. I am to ask for help… or else. 🙂
She brought us dinner to fix last night and it was delicious. I was asked what my mental health days would look like. For me, that’d be putting a LEGO set together, going to see a Marvel movie if one is out or Redbox if it’s old, napping, and maybe coding for fun. My wife would have her mental health day on the same day and everyone would bring the boys back at night.
Then there are date days and sleepovers for the boys. Also tagging along for family days, like Busch Gardens, will help ensure nothing stresses us out and I can take as many breaks as I need. Doing things will become harder, but the boys need normalcy and having aunts, uncles, and grandparents along makes it more fun!
We’ve had a very stressful past three years, but it seems that those were just warm-ups for life’s big trial. A few things have shocked me so far that I didn’t anticipate with my years of mentally preparing myself for lung transplant. I’ve known it was coming since 2006 when I dipped into the <30% lung function range after a drug trial placebo left me hanging. That’s a long time to prepare, but still…
- I didn’t expect to see such clear damage to my lungs – visually – with a CT scan. I’m looking forward to seeing my old lungs in the lab after surgery, but to see their insides with cysts and mucus was a shock but made how they physically feel in my chest a much more real and visceral status going forward.
- When we read an article about the new transplant pulmonologist arriving at Tampa General/USF, one thing caught us off-guard. In order to be considered for transplant, you’re not expected to live more than one or two years without this life-saving surgery. Yeah. No one said that in so many words to me before. “You’d be dead in two years if you weren’t moving forward.” My mind and heart wasn’t ready for that.
- I didn’t expect to feel so discombobulated and wrecked. I’m strong. I’ve prepared for this. I’ve fantasized about it since at least mid-2010. I want it so much… so why am I stressed? Thinking it may have to do with the first two points, but I’m not sure.
We’ve made plans for who can be here with the boys when we get “the call,” who will stay/transport them so my wife can be with me 24/7 for the first few days, and how people can help when I come home.
There are a lot of meals to prepare and freeze for her, a bag to pack and leave in the car, ensure our laptops always have some charge on them, ensure the cars don’t get below 1/4 tank, extra phone cables, and a hand-off plan for my business items.
Just inside the door, we set up a sanitizing station with masks and a hand sanitizer and I got a washable 1-micron mask for pre-transplant. Amazon has the post-transplant mask I want, but we didn’t go that extreme yet. Then there is pressure-washing the mold and mildew on the sidewalks and driveway and top-to-bottom cleaning the house so while I’m recovering it doesn’t take as long cleaning before I come home. I’ve got part numbers of air filters to replace.
Some people go through this with a significant other and maybe a parent or two, but we have eight family members ready to step in and a church group asking how they can help. With so much family, we’re actually thinking of gaps that our plan has to give them an opportunity to help.
It’s good to be so well loved.