CF Clinic

I had a quarterly clinic appointment last week.  Overall the appointment was good.  My PFTs where down about 9% (FEV 1), which is a little disappointing.  But during my last visit, my PFTs where at the highest ever, so I knew that would be hard to duplicate.  I talked with the doctor about the significance of this drop.  She had no concerns, what-so-ever.  First she said my numbers are still really good, even if I am below my personal best from last time.  These numbers are also well within my average range for the past year that I have been attending this clinic.  Additionally, she said this disease is not just about the numbers, it is also about how I feel.  Since I am feeling really good right now she includes that in her assessment of what these numbers really mean.  I guess I am a little disappointed because I have been working really hard; 100 % compliant with treatments and meds.  I was hoping to stay at that high PFT level.

We also talked about my sinuses.  My sinuses are here and there.  Some days I feel fine and other days are really hard and painful.  I asked about sleep apnea.  I have been researching sleep apnea, as it is a common cause of sinus complications. Basically, sleep apnea is a loss of oxygen while sleeping.  There is one form of sleep apnea that occurs and you would have no idea you are losing oxygen.  The Dr. was more than willing to order a sleep study for me, although she did say she would be surprised if that was the problem.  Yeah, well I have been surprised by test results before, so lets see.  My appointment is on January 26.  I will pick up some equipment and use it that night at home.  I'll learn more about how it works at the appointment to pick up the equipment.

A funny thing about the appointment: I knew two other CFer attending Clinic that day.  I saw one person before and one after my appointment.  I met both of these women at a CF fundraiser.  It was nice to be able to catch up with both of them.