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  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…

Hanging in there

I finished IVs on Friday morning.  It was a long 10 days of a 2 hour infusion every 8 hours.  That’s 60 hours being hooked up to “the pole” in the 10 days, which doesn’t include all the breathing treatments, pills and time hooked up to oxygen.  Yes, taking care of myself is a full time job.  It is tiring at times and annoying most of the time.  I do try and look at treatment time as a positive thing.  It is sustaining my life and I get to update you all on this here blog while doing my treatments along with trolling Facebook. Continue reading