Thursday, November 17, 2011

CF Clinic

Last Thursday I had my quarterly CF clinic appointment.  I can't believe how fast time goes in between appointments.  I went into this appointment at the tail end of a cold...which included a bad cough.  I wasn't sure how things would go at this appointment.  My PFTs were all over the place compared to last visit.  My FVC was down 12%, my FEV1 down 2%, but my F25-75 was up 20%.  My F25-75 (which looks at the function of small airways, at least that is how it has been explained to me) has always been low.  Last May, my F25-75  was at 55.6 %, the lowest measurement I have ever recorded.  Now I am at 89.1%.  I am confident this has a direct relation to using hypertonic saline.  I have been using HTS for 7 months.  Ever since day 1 of this treatment, it has been an effective form of mucus clearance.  I could always tell it was removing deep mucus, that no other form of treatment has been able to touch.  It has been removing junk that I didn't even know was there.  And the proof is in the numbers. 

My fall appointment also marks my annual blood work.  I need to find a morning where I can have 20 tubes of blood drawn and sit for 2 hours for a glucose tolerance test. 

We also discussed my previous sputum culture.  I grew all kinds of bugs this time: aspergillus fumigatus, phoma, pseudomonas aeruginosa, and mycobacterium abscessus.  No staph, for whatever reason.  This is the first time I have cultured mycobacterium abscessus.  The doctor explained that m. abscessus is a water mycobacterium and is hard to avoid.  It can be introduced into the body just by taking a hot shower.  I have another culture being analyzed.  If I grow the bug again, I am going to go for a CT scan to see if there is any evidence of the mycobacterium causing disease in the lungs.  Otherwise, we will just continue to monitor PFTs and general health without an aggressive action plan. 

As for my cold/cough, it has pretty much cleared up on its own and I am feeling much better. 


  1. Ugh, I'm so sorry about the abscessus. It's certainly been an adventure for me. I'm hoping you can avoid the months of IV's for as long as possible... Thinking about you!

  2. I am sorry to hear about the new stow away! Glad you are feeling better now. Could that have been why you were feeling especially bad for so long after the fever?