New Triple Drug for CF is Approved!

The new triple drug for CF has been approved!  You can read the FDA article here.  It is supposed to help about 90% of the CF population.  It is for my CF mutations (double delta f508).  The name of it is Trikafta (elexacaftor/ivacaftor/tezacaftor).  I can’t help but to think trifecta when I see the name…haha. Continue reading

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