First, an update. CysticDad just called and said they came out and said everything is going textbook so far, they have put in one whole side of new lungs and they are getting ready to take out the next side. Yay!
Second, a comment, I only have writing permissions on the blog, so I won't be able to approve any comments that you make. Sorry!
I was reading my posts keeping the readers abreast of the status of my sister, when I realized that they lack that wonderful little thing called EMOTION. This I attribute to me being a "salty dog." For those that are not aware, that is a word/phrase used in the Navy and Marine Corps to describe an old and experienced sailor. I think it is also specifically fitting to anyone with Cystic Fibrosis, since we are literally so salty. And, by the time you are almost seven years post transplant you just roll with it.
So, in the case that CysticGal goes back and reads my posts on her blog, these are my words of advice on how to survive your transplant:
1) Slow and steady wins the race. Thanks to Michael Reidy, M.D., for explaining to me early that this is a day to day process that will last forever, not a quick race to the end. Just keep chugging along.
2) Use people's strengths, don't make them be good at their weaknesses too. For example, one of your a-hole doctors may have a personality problem, but may be the best physician. Separate the two, and get someone else to give you warm and fuzzies.
3) Don't get discouraged by bad times. It is easy to feel disappointment or even failure when you have rejection, or a cold, or your PFTs have fallen. It's just one of those things that happens. See #1.
4) There is no normal, there is only experience.
5) Work harder than you ever had. You want to pray? Pray while you're walking. You want to swear at people? Swear while you're walking. You want to tell people to SUCK IT? Try the phrase, "I walked four miles around the nurses station yesterday, SUCK IT." It rules.
6) Brag like hell about how awesome you are. (I think CysticGal has this one down already)
Will keep updating. TP