Infection prevention post-transplant: What does that mean? Does that mean you have to live in a bubble for the rest of your life? Or does it mean living the life you were meant to, but with caution, by taking certain measures? You did not get “new” lungs to live in a bubble that basically limits you to the things you were physically incapable of doing pre-transplant. But you have to protect yourself from infection because infection risk is increased post-transplant.
I'm a cautious person and I sometimes think a little too much about the way bacteria and viruses are transferred to people and all of the things that I touch that have been touched by others -- the chain of germ transfer I guess you could call it. Anything I touch inevitably gets on my phone, water bottle, and steering wheel, unless I disinfect those things proactively every day. I definitely don't get around to doing that, but on occasion I will try to clean my phone, especially when I'm traveling.
These aren't things my care team went over with me. But there are many things that health care providers inform you about, both pre-transplant but mostly post-transplant. Some of the very many infection-related questions my caregiver, who is my sister, and I asked were about the things I could and could not do with new “air baggies.” When, where, and how long would I have to wear a mask? When would I be able to fly and what would that look like? Would I have to wear a hazmat suit or just disinfect my seat, tray table, and wear a mask every time I flew for the rest of my life? Planes are wicked dirty anyway, so I don't mind looking like I have the plague. Hey, fewer people will want to come near you, which sometimes leads to no one sitting next to you!
It's been a year and a half after my double lung transplant and I still have questions for my transplant team.
My doctor jokingly said at my last appointment that he'd never had a patient ask such interesting -- and random -- questions. I suppose my question about having plants post-transplant (I can't) and finding a loophole about air plants (I can!) was one he hadn't been asked before.
One problem in the world of transplant and care centers is that answers to questions aren't going to be uniform. They may follow different guidelines. I have many friends who have CF and have had transplants and not all of our centers have the same “rules.” Yes, a lot are the same but why such a difference in yes and no? I guess some doctors may have more experience with different outcomes so their answer to something may be different than another doctor. Maybe some are just super cautious and say no more to things because they just don't want something bad to happen. Sometimes there just aren't enough studies or knowledge about certain things so they just say no to err on the side of caution.
No matter who you are or what stage you're at, questions are good! Don't hesitate to ask your healthcare providers things you wonder about or things you've seen other people with CF do, whether you agree with it or not. At the end of the day you will do what's right for you and what lets you live your life. If you want to get a pet chicken and snuggle with it every night, then go for it. But know the risks -- and no, I don't suggest snuggling with chickens, they can be dirty and carry certain bacteria. There's nothing wrong with being a little cautious when it comes to your health. I will always ask questions until the very end.
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