Still not feeling well

Today I had a check up since I’m not feeling better after 6 days of IV antibiotics.  My lung function was down again to .88L/31% FEV1.  I started a prednisone taper on Tuesday, starting at 60mg for 3 days, 40mg for 3 days, 20mg for 3 days then 10mg for 3 days.  I was hoping that the taper would help with the wheezing and chest tightness, so far it’s a no go.  We decided that if I am not better over the weekend I am to call my nurse to be admitted.  They want to add Colistin to my IV antibiotics but want to start it inpatient because of the history of kidney problems with it.  There was that one time that my creatinine shot up to 7.0 with the normal range is up to 1.1.  Therefore we have to watch it every time I’m on it or any IV antibiotics for that matter.  So I will take the weekend to rest, do lots of treatments and hydrate and hope I feel better.  However I kinda feel like I am prolonging the inevitable of an admission.  Might need the heavy hitters to knock this one out.  I’ll update next week.

Until next time…

IVs it is!

I tried the oral antibiotics route and it didn’t help.  I’ve been on them for about a week and a half.  All they have done is make for a yucky tummy.  With that said, I called my nurse for IV antibiotics.  I haven’t felt good for too long.  It’s always hard to tell if it’s a new normal or if I’m actually sick sick.  So I’m looking at this one as I’m sick.  I will be doing IV Zosyn every 6 hours for 14 days.  I will go tomorrow morning to get my port accessed and to get labs drawn for a baseline.  They also want an x-ray.  So I will be walking all over the hospital.  I’ve also been having bowel movement problems, as in not going.  You would think that with both strong antibiotics in my system I would be going non stop.  My body like to not do things the suggested way. haha.  I am drinking lots of miralax to combat the problem, which is no fun.  I hope to update in 2 weeks that I am feeling better.

Until next time…

Just a reminder about my www.COTAforShannonM.com fundraising link for medical/transplant expenses.  There is a fundraiser in the works for you Kansas City folks.  More to come on that.

Threw in the towel

Hey all!  It’s been a little while since I have updated.  I have not been feeling well for a few weeks.  I have been coughing more, especially at night.  I went for lung functions and to give a sputum sample today.  My lung function is down just a tad.  My FEV1 was .95L/33%, down from 35%.  That’s the amount of air that I can push out in the first second after taking in a big deep breath.  Which basically means I’m using 33% of my lung capacity. Continue reading

FDA accepts new triple combo drug for Cystic Fibrosis

Click HERE to read the article that came out yesterday stating that the new triple combo drug for CF has been accepted by the FDA.  This is big news for the CF community.  There are 2 other newer drugs called Orkambi and, the newest, Symdeko as well.  This new drug is another step in the right direction.  I qualify for it because I have 2 copies of the delta f508 mutation.  Supposedly it should help about 90% of the CF community. Continue reading

Yay for good clinic appointments

Today I had CF clinic.  It was an all around good visit.  Sometimes I hate saying that I feel “good” because I know it won’t last forever.  First up was lung functions.  My FEV1 was 35%/.98L which is pretty much the same as last time.  My weight was stable at 123 and my pulse ox was 95%.  I met with the whole team of folks and was sent on my way.  Can’t complain there.  The pulled muscle I had FOREVER is finally better.  Short and sweet update!

Until next time…

Still fundraising for transplant at www.COTAforShannonM.com.  Thank you for everyone that has already donated, it is greatly appreciated.

Pulled muscle yet again

My pulled muscle from the the beginning of April was getting better and then BAM I have another one. This one is worse than the last. It’s on the same side (left side). This one is just above the other one and radiates under my armpit around to my back. It hurts so bad to cough. I woke up around 3:30am coughing and in pain this morning. I had to do a breathing treatment to attempt to calm my cough enough so I could get comfortable enough to go back to sleep. I managed to do that. The pain could also be an infection brewing which I really hope it’s not because I have a very busy summer. I can’t afford to be in the hospital and don’t want to be on IVs.

Until next time…