Let the new trend begin

This past weekend was amazing! I had so much going on, yet so much fun even with the lack of sleep. Thursday I had gone back to TGH for labs and to give a petty sputum. I say 'petty' because these days thats what a post-transplant CFer can give. We dropped my goodies off in Tampa and headed home. I was told to call at 12 if I hadn't heard from anyone about the results. So I didn't want to annoy and waited until 12:15 to call. But, I suppose I was early, and still annoying because I was told someone will call me back when they are done with clinic.
Five o'clock rolls around, and the coordinator calls me. Looks like I may be growing MRSA and my Prograf is a little high still. So he decides to call in Zyvock(not sure on spelling) and to lower my Prograf to 1mg in AM/PM. That's good news-maybe I won't be shaking so bad. MRSA isn't such good news, it takes a lot of hardcore antibiotics to kill it-and it wears me out. But we have to watch the sputum to see for sure if it grows anything, pray it doesn't, and start the meds anyway.
Well, sounds all fine and easy...but its 5pm and the Pharmacy says that I need prior authorization from BCBS to get this $18,000 drug. Understandable. But clinic is closed, no doctors there after 5 to sign. I decide the only thing to do is to call clinic first thing Friday AM and have them fax the prior-auth. Well, long story short we go back and forth between pharmacy and clinic, both saying they've done their part but no one really have done anything but point fingers. It's late now, 4:30 and its a holiday weekend. They aren't going to like me Saturday morning. I called urgent line at TGH, they called back in 15 minutes-REALLY? Is that all I had to do? Say that this is urgent? IT'S URGENT! The sooner I start my meds, the sooner I stop the bug! Well, he says there are no docs or people at BCBS during the weekend holiday and I'll have to wait until Tuesday(today) to see what my culture grows and we'll go from there.
BAM-Today, good news! My trip to Tampa was not completely a waste. I hoping to start a new trend beginning today. My Prograf level was good 11.3, my kidneys are recovering, and I DID NOT grow MRSA! It's my normal pseudomonus argenosia, the lovely beast-but not bad! This is the first week I haven't had to change something I'm doing. I'd LOVE to keep that up! I won't hold my breathe-even though I can..*wink wink*
Also, this past weekend was lots of fun. We had Grandpa and Janette come up and visit for Grandpa's big 80! What an achievement! I hope to one day have nearly as many stories and experiences as he does. That night we took them to Sky in Ocala-one of the best Asian Fusion restaurants I have ever been too. We hadn't been in 3 years-and I don't know why! We surprised him with Dustin being there too. It was great! He had been asking about Dust all weekend, and I kept it a secret...ME! I know, I was proud of me too!
Then, we woke up early to head to St.Augustine to see the Kennen family. We all met at Anastasia Island. It was Jon and I, Bob and Cheri, Tracy and Bobby, Brian and Rhonda, Jane, Trey, Regan, Justin and Zack. The weather was perfect. It was overcast but not cold or hot, and the water was just right. Poor Jon got burnt to a crisp...I was REALLY good with my sunscreen. It was hard because I use to be a sunbaby, but since transplant I can't really do that anymore.
This was also a huge day for me. My lungs and I hadn't been to the beach since transplant. And the salt air and my toes in my sand felt so much sweeter this time around. I could smell the salt. I could feel it, like really feel it. It was beautiful..a near religious experience. I pray my donor was there holding my hand, breathing in with me-and feeling my gratefulness for their gift. Soon I hope to know more about this mysterious Angel. Until then, I continue to feel their wind pushing me forward.