I had clinic on Monday. The X-ray is good, the PFTs are in their normal range, so that's all happy. The biggest happy, though? I got to go off prednisone! Yayyyy!
Prednisone is a steroid that does some nasty things to your body. It keeps inflammation down, and it's widely used in the transplant world. In other types of transplant, people can go off this drug after a few years. In lung transplant, that's much less common. So I knew that there was a good chance my doctors wouldn't let me go off it. But I'm 11 years out, I'm stable....I might as well ask!
"These lungs are basically yours," my doctor told me, so he didn't see a problem with me trying it. I have to go back for lung function tests (PFTs) in December, to make sure that nothing evil is happening in my lungs. But right now, I am off prednisone.
I'm not going to lie: the first few days of this have been rough. After only seven days, your body adapts to prednisone and makes changes in a lot of ways. I've been on it for eleven years. Tuesday, Wednesday, and yesterday were a bit tough as my body adjusted to being off it, especially in the muscle/joint department. They liked steroids. I'm hoping that now that I have good lungs that are not full of Evil Bacteria, my joints will be happy without the prednisone. (CF people often have a sort of quasi-arthritis--it's not "real" arthritis, but joint pain, stiffness, etc. happens.) I really didn't miss all that insanity, so I'm hoping that they're going to be happy without the pred.
On Wednesday I got to see one of my favorite singers, Canadian artist Loreena McKennit. If you're not familiar with her music, here's a few tastes:
She's hard to categorize; sometimes she's labeled "Celtic", sometimes "new age", and sometimes "world", but I just say she's great. She rarely tours, and very rarely tours in the U.S., so when tickets went on sale for her one concert in town, my friend Suellen and I jumped on them.
Our AP English teacher, Mrs. Low, had introduced us to Loreena's Music, with "Lady of Shalott" and "The Highwayman"--so we've been fans for a long time now. (Yikes, 17 years!) Hearing her sing "The Lady of Shalott" in person has vastly added to my lifetime happiness.
I'm also doing NaNoWriMo! This is my fifth year. I'm writing a story about a girl who enters a monastery. I've been wanting to write a novel about nuns for awhile, but having seen a lot of recently released novels that paint nuns in a less than flattering light made me move this story forward over other NaNo ideas. It also has a strong ballet component, so I'm writing about two pretty rarefied worlds in one novel. (And no, it's not like the ballet in Trouble With Angels. Ha!) I'm going to hit the 10K mark today.
(If you're not familiar with NaNo: The objective is to write a 50,000 words novel from start to finish during the month of November.)
As soon as I hit 10K today, I'm watching The Crown on Netflix. Seriously. I love Claire Foy, I love the Royals, I love Netflix....it all works together for pure binge watching enjoyment! (And there's going to be a second season! WOOOOO!) The goal is to have 60 episodes over 6 seasons. So Claire Foy is playing Queen Elizabeth II in the early part of her reign. I'm so excited. Seriously. Royal geek, right here.
(And Stephen Daldry is directing episodes! He directed one of my favorite movies, The Hours.)
OK, wow, that's enough fan-girling for one post. Sorry guys. :) Have a great weekend!
Next week--my October reading wrap post. It's long! It's fun!