Friday, November 18, 2011

Introducing San Francisco's Finest

The Northern California Cystic Fibrosis Foundation is putting together a new fundraising event call San Francisco's Finest.  As part of this event, they have selected 20 young professionals in the Bay Area to head up the fundraising for the event and then be honored and recognized that evening. Honorees are nominated based on being a career oriented individuals who display leadership within the community.  I am thrilled to have been selected as an honoree. 

Last night was the kick off meeting for the event.  The CFF staff gave a presentation on the event, including fundraising goals, expectations and available support.  The Board of Directors was there too.  It was very motivational.  On the drive home I came up with tons of fundraising ideas.  I think this is going to be a great event. 

This event will most likely turn into the focus of my blog for the next couple of month, so there will be lots more information in the up coming weeks.

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.