Run, Sickboy, Run - Cystic Fibrosis and Exercise: We Have a Plan!!!!

Why do I have RunSickboyRun.com?

Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life. RSBR is a hub for comfort, information, advice, encouragement and understanding. It is a place where no question is ignored, no accomplishment is too small, no goal is too big, and every comment is cherished.

Material on this site is produced by Ronnie and Mandi Sharpe

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Wednesday, December 2, 2009

We Have a Plan!!!!

Alright, so we have a plan! With a few adjustments and my fiancee here, I should get these numbers back up in no time!!! There was some miscommunication in my medical files that got cleared up so, we have one more weapon now to kick this PA in the butt. It's important that we all take control of our own health and know our own history so this kind of stuff doesn't happen. Partly my fault, partly theirs, no big deal. The new battle starts TODAY!!!

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Lindsay Conde · 800 weeks ago

Glad to hear it! Kick that bug's ass :). We're with you in spirit!!

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CFMama · 800 weeks ago

Yay, what a great surprise!!! Do you know anything about pseudomonas putida? That's what Nathan's culture grew...they are going to treat it aggressively even though it is apparently not as bad as PA.

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Heidi · 800 weeks ago

Yeah for a new plan! I hope it works!

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Heidi Karn Barker · 800 weeks ago

The prednisone will definitely help kick that inflammation. I also tried prednisone in several spurts over a few years, and it worked well, too. I did gain about 30 lbs, but lost it after tapering off the steroids - felt like superwoman the whole time. I was also on 2400 mgs of ibuprofen a day for at least 3 years due to inflammation - but that was in 2002 - 2004 (do docs like to do that any more?). I hope the steriod burst works - glad Mandi is back in town!

1 reply · active 800 weeks ago

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RunSickboyRun 96p · 800 weeks ago

I wish I could just take ibuprofen for the inflammation but they get concerned to give me too much of it because of my bleeds :)

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Laura · 800 weeks ago

Glad to hear you have a plan! Mike is just finishing up being on Prednisone right now too... I had heard horror stories about it... but so far so good! Good luck with it. I'm sure it will work well for you. Feel better!!

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Erin Goodrich · 800 weeks ago

i just got prescribed a burst prednisone today at my appt! wooohoooo lol..hope youre feeling better soon!! i get my new sneakers tonight by the way :)

1 reply · active 800 weeks ago

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RunSickboyRun 96p · 800 weeks ago

Can't wait for you to get your sneakers!!! DO me a favor and post a picture on FB!!

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Alison Henderson · 800 weeks ago

Hey Ronnie delighted things will start to improve. I am in hospital at the mo aswell, I have a very low lung function trying my hardest to get it up. Would u mind letting me know what ur new plan is as i can't find it on ur blog. It could be looking me in the face but all these drugs have made my brain a big foggy. Thank u so much xx

1 reply · active 800 weeks ago

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RunSickboyRun 96p · 800 weeks ago

It's laid out in the video on the post. In case you can't play the video, the plan is a prednisone burst for 5 days and to add cipro...I hope you get out of the Hole soon and feel better ASAP!!!

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Josh from Joshland · 800 weeks ago

Hey R-Diesel,

Prednisone is a blessing and a curse isn't it? One thing that is hard for me when I do Pred is when my airways open up all the crap that is already loose in there sometimes slides into the lower parts of my lungs. Make sure you really work those lower airways when the RT's beat you up, M'boy. Do you ever get super emotional on Pred? My wife says I get a little crazy when I am on it, but she still loves me anyways.;-)

Cipro will help. Wear long sleeve shirts though. The sun is a killer with Cipro and will make you break out in heat rash even when the sun isn't very strong.

Hang in there, Fibro! Glad Mandi is back. Hi Mandi.

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Josh from Joshland · 800 weeks ago

Hey R-Diesel,

Make sure you work your lower lobes when you are on steroids like Prednisone. Sometimes all that crap will slide down there once your airways open up. Do you get crazy emotional when you are on Pred? My wife says I am so off-kilter it drives her crazy, but she still loves me.

Cipro is good, just stay out of the sun. Major heat rashes can occur even in the December sun. I unfortunately found this out the hard way.

Glad your girl is back to pump you up, M'boy. Hi Mandi. Great job on your marathon!

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Piper · 800 weeks ago

Gimme a P! Gimme an R! Gimme an E! Gimme a . . . oh, you get the point.

What does it spell?

Bloating, munchies, insomnia, mood swings, and oh yeah, NO MORE INFLAMMATION!

Here's hoping that the pred/cipro combo works wonders dude. So happy to see your fiance made it home safely and I''m sure that will aid in your recovery more than anything. I expect a happy post next week telling us all about the major progress you've made!

Piper

1 reply · active 800 weeks ago

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RunSickboyRun 96p · 800 weeks ago

Thanks Piper. Feeling better already!!!!

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Kevin Jones · 800 weeks ago

Hey Ronnie,
Hope those drugs do their job and your lungs start feelng better real soon. Do you take Colistin? Good luck man!

1 reply · active 800 weeks ago

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RunSickboyRun 96p · 800 weeks ago

Yup, but only in the hospital!

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Kerry · 800 weeks ago

We're thinking about you and glad you have a new plan! Good luck!

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Summer · 800 weeks ago

That is so crazy! I just got a steroid burst for 5 days and cipro today. Tis the season for steroids! =)

1 reply · active 800 weeks ago

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RunSickboyRun 96p · 800 weeks ago

I'm getting cipro tomorrow!

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Jess · 800 weeks ago

Good luck with the prednisone, yea the side effects suck but it does help with the inflammation and pain. Glad Mandi's there to give you a second wind!

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hattie · 799 weeks ago

prednisone boo! i went on it in feb. and my body totaly became addicted to it! worked wonders though! I am still stuck at 11 mg, tappering every few weeks by 0.5 mg.
also ronnie thanks so much for posting about cipro giving you blOOD. I have been on cipro for three weeks, and coughing up blood...no infection symptoms anymore other then theblood. which started a little after when i went on oral cipro. intersting to know about it. when it happened to you, did it happen right away or after a lttle while being on cipro?

1 reply · active 799 weeks ago

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RunSickboyRun 96p · 799 weeks ago

I remember it being more instant, or let's say, within 3-4 days or so of starting it. It was a long time ago though so my memory may be fuzzy. I've been on IV cipro now for a few days and nothing has happened as of yet :)

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