Jim Fahr and his wife, Denise, come to Florida with her parents each year for some time off at a time-share over in Kissimmee. Well, last year, Jim didn’t come because he’d just started back at work 9 months post-transplant and didn’t want to immediately take a vacation, so we only met Denise and her parents.
This year, Jim came! I’d been looking forward to their arrival for a year – ever since I found out he wasn’t coming last year. Beautiful is part of the Facebook group of “CF Wives” and 5 of them meet every month or 6 weeks to have dinner and catch up. When they got the dates Denise would be in the area, they set up their night to work with the Fahrs’ and I set the evening aside to be with Jim and just be with a dude who’s been through a transplant and is living life large again.
The evening couldn’t have gone any better, unless it didn’t end, but it did end around 9:30.
We met the Fahrs at the Barnes & Noble next to the mall before dinner and visited with just the 4 of us for a solid 30-45 minutes. They’ve got 13 years of marriage on us, so it’s neat to see a glimpse of ourselves a decade in the future.
When I sit and think in my rare moments of quiet, I am so glad I “came out” online with my CF in early 2010 and now have such a huge group of friends who deal with the same issues and truly know what you’re going through. It’s all right and all good that friends and family know that I have CF and that we deal with other life issues than most people, but even in that circle, they still don’t deep down know and feel what we feel.
Clinic visits and figuring out details related to planning for future events always turns my mind towards transplants. I’m sorry if it depresses you, and I know I’ll be scared bowel-less in pre-op if that day ever comes (even though my doctor said “we’ve never lost anyone on the table”), but some people also need to be reminded that this as a reality of CF. Unless there is a cure before my bugs become resistant to every treatment available, it is inevitable sometime down the road.
I’m back home already from this morning’s bionic lung transplant! Wow, these new lungs are AMAZING!! Since they basically are ventilators, they didn’t need to put me on a vent or anything when I came out, so recovery was just a matter of hours. Also, without having a lot of foreign tissue taking up a lot of space, they said the swelling they expect didn’t require putting in drainage tubes, so they sent me home after I could eat a meal and go to the bathroom.
Thursday ended with a huge bang with a call from my CF center to come in at 4am for an opportunity to be one of the first CF patients to receive bionic lungs! It’s been something I’ve thought about since the old movie “