So, the news from last week knocked the wind out of my sails for a couple of days, but I picked myself back up and got my groove back. I can't live my life getting distraught about what a test result says...especially when I'm feeling so fine. AND, I must say, that I am feeling so, so fine!
After going off of the Zyvox I noticed a huge difference in my energy level. I actually have some energy now. Having been sick for so long, then being on a gajillion medications, I hadn't felt my typical manic levels of energy in eons. It's back and I am cherishing every little ounce of it. I know it may be fleeting...so I am making every effort to take full advantage.
I have to say, I feel a little guilty posting about feeling well for a change. So many of my fellow CF warriors are struggling right now. I have a friend in New Zealand who is picking up the pieces of her life after a devastating earthquake earlier this week. I have lots of friends right now who's lungs are bleeding, belly's are unbearably nauseous or are just recovering from hospital stays. All of this suffering, while I feel, dare I say it...healthy. There's a little bit of that survivors guilt creeping in again :-/
In other news, I started the Spireva phase 3 clinical trial yesterday. I did the phase 2 a little over a year ago, but didn't see much change in my health since I was in the midst of fighting off all of these bugs that I didn't even know I had yet. Yesterday I was at clinic for 6 hours. We did a pre-dosing PFT, then 4 post-dose PFT's. Once every hour for four hours. Here's the cool thing...my pulmonary function increased by 5% from my first PFT to the last!
Spireva is currently FDA approved for patients with COPD. Some CF patients currently take it off label. This study is intended to allow it to be used more liberally with CF patients. So far so good! I've had no side effect and my lungs feel fabulous! The plan is that I will be on the drug in the trial for 12 weeks, then I will go on it off label for up to 9 months longer. After that point, if I want to stay on it I will have to be prescribed it as part of my treatment plan at my expense.
We'll see where this takes us...
I want to thank all of my followers for your kind words and messages last week. Your support means more than you could ever imagine. I am convinced I have the best readers in the universe!
10 comments:
I hope that the Foundation's announcement today filled you with as much hope and good vibes as it did me. Hang on to your good health, girl. It's a comin'...it's a comin!
xo
k.
Good luck with the trial...and glad you're feeling so great!! Dont feel guilty, I understand what you mean tho. Did you get the mani/pedi??
Glad you are having an energy spurt. Hope it continues. Thinking of you and keeping you in my prayers. Hope all is well with the rest of the family. Love, Aunt Barbara
Thanks for stopping by my blog!
I am following you back now. :)
Glad you are feeling healthy. Don't feel bad for it, I am sure your friends won't begrudge some time feeling good even if they are having a tough time.
I love the picture at the top of your blog.
Good luck with the trial.
That sounds like a hell of a clinic visit. Long! And so many pfts! But all worthwhile for that 5%.
Keep feeling GREAT, Stacey. That is wonderful to hear.
Thank you so much for sharing your experiences with CF. At the risk of sounding condescending and, well, stupid, I still have to tell you how proud I am of you. You have faced challenges that most people do not even give a second thought to. Yet, you have faced them with strength and grace and have gone on with life despite it all. I want to be just like you when I am faced with adversity. Thanks for sharing. Jana
Thank you all for your kind words!
Hi Stacey, I'm really glad to hear you're feeling better, more energetic and like yourself again. I often don't realize how much a strong antibiotic has zapped my energy until I stop. It is always such a nice feeling to have a busy day and still have some spring in your step by the night. Enjoy it!
Also, I want to thank you for your message on my blog a little while back. I posted a response soon after and it just occurred to me that you probably never saw it since blogger doesn't notify you when people reply to your comments.
Here's what I wrote:
Stacey -- Is that, by chance, Dr. Elliott Dasenbrook at Case Western? If so, it is so funny that you mention him because I saw that he was doing a clinical trial with inhaled vanco for treatment of MRSA and my doctor and I ended up getting in touch with him. We emailed a handful of times and my understanding was the clinical trial had not yet begun. Do you happen to know where he stands with that trial now? Thanks so much for reaching out, i really really appreciate it :)
I hope you keep feeling well. Good luck with the Spireva study! It sounds very promising and I'm interested to hear how it goes.
Emily
http://abreathoffreshair-ekg.blogspot.com
Good to hear about your experience with the trial. My 11 yo son is starting this trial on Tuesday!
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