So a lot of you are probably familiar with a steroid called prednisone (and if not, check this out). Basically, this is a strong anti-inflammatory drug that almost everyone is on after transplant. A lot of CFers also use the drug in short "bursts" to treat exacerbations, infections, or just the asthma component of CF. Many of us love this drug because, unlike antibiotics, it has the almost immediate effect of loosening tightness and reducing airway irritation. For me it is pretty much a go-to drug when things start to slide downhill because it's the only thing that helps me feel good enough to do the other things I need to do in order to fight off whatever else is wrong.
Sounds awesome, right?
Well, I'm basically on week three of the drug right now. I did one burst starting in Mid-Sept. (3 days at 40 mg, 3 days at 3o mg, etc) and then my HR was still a little high so we started a second burst. I think this one has more or less helped me through whatever infection might have been threatening to take root (I also switched from TOBI to AzLi and added oral cipro), but that doesn't mean it's been fun. I still have three days of 2 pills to go and then three days at 1 pill, so another 6 days altogether. Ugh.
I am literally hungry ALL the time. This is actually a good thing, because I could use the weight gain from the extra calories, but it's still annoying. I see food and want to attack it, and if I go more than about an hour without eating I feel starved. I even wake up in the middle of the night hungry. On top of all that I'm of course still working, so I'm basically sitting in my office all day inhaling cookies, peanut butter, chips, and candy bars. Wow, that's a healthy diet. On top of that the prednisone makes me a little hyper and it pushes up your blood sugar levels, so I'm basically on a constant sugar high (made worse by all the eating). It's pretty amusing actually...I've definitely burst out laughing a couple of times when I look down and see that my desk looks like a food graveyard. Good lord.
Don't get me wrong, I am so thankful to be feeling good and to have gotten everything under control without IVs. I'm also really lucky, in the sense that Prednisone doesn't cause me any of the serious mood swings some people experience. A little hyperactivity is nothing compared to feeling grumpy or sad all the time. But still, I'll be super glad when it's all over. Maybe then I'll be able to actually stop eating BEFORE I start to feel ill from overstuffing!
About Me
- Piper
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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Send all emails to:
matteroflifeandbreath@gmail.com
matteroflifeandbreath@gmail.com
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This post makes me smile. I remember needing to stock up at the grocery store when my husband would have to be on prednisone. I hope the next 6 days pass quickly for you!
ReplyDeleteThis is the one drug post-transplant that I want to get rid of the MOST. Yes, it does a lot of good things, but the side effects (the ones you listed, plus others) are very hard to deal with sometimes.
ReplyDeleteGlad you will be off of it soon!!!!
Piper,
ReplyDeleteI can totally relate to this. I glanced in my trash can at work the other day and there were about 20 plastic wrappers from the individually wrapped life savers - i couldn't get enough of them! not to mention the coffee, mints, goldfish crackers, my lunch... :)
Thank GOD for steroids! :)
ReplyDelete