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CF Appointment

Finally something CF related ;)

I had my 4th quarter appointment on November 3rd.  I was scheduled to have my annual blood work done that day.  With an afternoon appointment, I held off on the glucose test...I didn't want to fast all day - this girl has got to eat!  But, I'll get it done in the next couple weeks.  I know its fine, so no real rush on my end.

I was happy, I was in and out pretty quick.  Here's the outline of my visit:

- Had 8 vials of blood drawn - yuck!  Thanks heavens I did eat or they would have had a passed out patient.
- Checked in at clinic and got to my exam room
- PFTs were done
- Respiratory Therapist came in to discuss PFTs
- Coughed up a nice specimen for them to test
- Social Worker popped in to say hello - fortunately I didn't have any needs with her
- Doctor came in - talked, did exam, etc.
- Out of there!

So, how were my PFTs?  Better - yay!! I finished Cayston on the 31st of October, so I definitely think that helped boost them.  Although, I did have a little tickle in my throat and coughed a bit.

                            11/3/15        8/4/15        12/10/14
FVC                       98%             94%             97%
FEV1                     89%             83%             85%
FEV25-75%          68%             57%             52%

I shared about my voice issue I've been having since the last appointment.  One day I'm hoarse, then the next I'm fine and then it starts all over again.  Fortunately, I was a bit hoarse that day and they could tell!  I hate going to the doctor when the thing that is wrong with you isn't wrong that day.  She looked in my throat and nose and didn't see anything other than my throat being just slightly red.  Lungs sounded clear too!  So, it's a mystery as to why my voice keeps going in and out...its still happening too :/

We thought maybe the HTS had been irritating it, but I had missed it a few days prior to my appointment (we were in WV working on the cabin and I didn't squeeze it in...but I did get some exercise!), so that didn't make much sense.  And all the other times I had been on it continuously.

I digressed - sorry.

Anyway, I left happy with my PFTs and planned to take Claritin to see if that helps as I have been going back and forth to WV a lot which exposes me to a lot of temperature changes and different allergens.

BUT....I was contacted by clinic on Friday the 13th!!  Coincidence?  My sputum cultured a not so lovely new bacteria,  Stenotrophomonas Maltophilia.  WTF is that?!?!  So, of course I googled and it doesn't sound fantastic.  Apparently this bug can be hard to treat.  I already have pseudomonas aeruginosa living in my lungs, and now another one...oy vey!

So, what are we doing about it?  How do I get this crap out of my lungs?  I was given a prescription for Bactrim to take 3 times a day for 14 days.  So, praying this does the trick!

I won't lie, I felt a bit defeated hearing the news of the new bacteria.  All I could think about was, is this the bug that will knock me down for good?

No!  This stupid bug won't win!  I'm gonna do everything I can to kill it off!  I'm just curious about where they heck it came from?!  I just don't know!




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