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

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

Symdeko update/MRI results

I started Symdeko April 19th.  It started to affect my mood (depression and anxiety), my hair has been shedding and giving me slight acne.  I decided to stop taking Symdeko mainly due to the depression and anxiety issue.  I have not felt like myself in awhile.  I made the decision to stop the Symdeko and the Effexor and find another antidepressant that will hopefully work better for me.  Now I’m thinking maybe I should have just stopped the Symdeko, but I didn’t think it was causing any issues until I realized that was the only new thing.  Now that I’m off of the Effexor I will try my best not to go back on it if at all possible since it was so hard to come off of it. Continue reading

IVs it is

When I was at CF clinic on the 2nd, I asked for oral antibiotics hoping I wouldn’t need IVs.  Sometimes (not too often anymore) I can get by with orals instead of going straight to IVs.  With my line of drugs that don’t work I’m limited.  Well I had to call them back because my cough and wheeze were still hanging around.  I asked only for a short burst of prednisone hoping it would help.  You guessed it, I had to throw in the towel and ask for IVs because my cough was persistent and the amount I’m coughing up has increased.  I went for lung functions and they were down a little (FEV1 34%/.98L).  When compared to my last set of lung functions they are down 4%. Continue reading

Depression really sucks

I am officially off the Effexor and it has not been easy.  I am experiencing what are called “brain zaps.”  It is really like your brain goes “bzzz zzzz zzz.”  It is very annoying and makes me want to scream.  My body is sore.  The commercials that say “depression hurts” are the truth.  It doesn’t help right now that I am on Levaquin that causes joint and muscle pain.  It’s a double whammy. Continue reading

Change on the horizon…hopefully good

I saw my psych doctor today to talk about my depression and anxiety.  My antidepressants aren’t helping anymore.  I’m on Effexor and have been for many years and it’s not working for me anymore.  We are going to wean me off the Effexor and starting Trintellix (a newer med).  It’s not going to be an easy time weaning off the Effexor because I have been on it so long.  I pray that it is an easy transition onto the new med.  I need a break through.  I deserve a win in this one. Continue reading