Life update

Hello all!  It’s been a little bit since I updated.  I have had a hard time with switching antidepressants BUT I’m finally starting to feel like myself again.  I still have some work to do but I’m getting there.  Like I said in the last post I kind of regretted stopping the Effexor, well I’m back on it.  The other meds just weren’t cutting it so I asked to be put back on the Effexor.  It’s been 4 weeks and I’m finally feeling decent.  I have lost weight from changing antidepressants.  My appetite hasn’t been the best but it’s getting better. 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

3 weeks of IVs complete

I finished 3 weeks of IVs earlier this week.  I do feel better than I did BUT I’m still having coughing attacks.  I’m attributing it more to asthma though.  I was offered prednisone at clinic on Friday (yesterday) but I declined for the time being.  I’m going to hold off and see if treatments and such can help.  We all know how much I love prednisone, NOT!  My lung functions were the same at FEV1 .96L/34%.  My first two attempts were 33% and my last one was the 34%.  I will follow-up in 6 weeks. 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

Clinic Update

It was a good clinic visit today.  It’s always good when they say that you look the best they have seen you look in awhile.  I don’t know if I can attribute that to the Symdeko or just feeling decent.  I’m not trying to sound like a doubting Debbie but I just haven’t had any major “ah ha moments” to convince me it is symdeko but I should stop that way of thinking.  It is obviously working for the better, especially since I haven’t had any of the side effects. Continue reading