CF Stuff

Wednesday was my quarterly CF appointment.  I'm happy to have a good report!  I had my annual blood work done too, but not the glucose test.  I had a 1pm appointment and I wasn't fasting all day - hell no!  So, I'll do it when I have a morning appointment in August.

I made the rounds with the whole team: dietician, respiratory therapist, psychologist, doctor, etc.  Is it strange to like going to the doctor? I truly enjoy my CF care team and enjoy catching up like they are old friends.

Fortunately, I didn't have any problems to report (just a little sinus stuff, but no big deal), it was short and sweet.  Here are my PFT results!

                         5/16/18     2/14/18    5/9/17     5/10/16    6/2/15
FVC                    99%         103%       99%          96%        89%
FEV1                  91%          95%        87%          84%        81%
FEV25-75%       73%           79%       62%          57%        61%

They are down a smidge, but nothing to be alarmed about, I'll gladly take them!!  They are still better for this time of year then they were the last 3! Woohoo!  I'm currently on my Cayston cycle, I was on Day 8 on Wednesday.  My doctor and respiratory therapist recommended using a nasal rinse to help with sinus stuff, but that ain't happening! The thought of shooting liquid up my nose makes me gag.  LOL  So, Claritin it is for me!

So, my appointment was great and I left feeling satisfied and ready to tackle the rest of my day.

Unfortunately when I got home, I read some heartbreaking news on Facebook.  A fellow CFer had passed away.  I actually had the pleasure of meeting April several years ago at a Great Strides walk in Augusta.  She and her mom were so kind and a light in the CF community.  April received a double lung transplant about 5 years ago, but was starting to have complications early this year and wasn't approved to have another transplant.  She was planning to marry this October.  I'm heartbroken for her fiancé and family.  Breathe easy, April.  You'll never know the people you made an impact on by sharing your journey.

So, I sat and cried for a while.  For April.  For the life she didn't get to have yet. For her fiancé. I can't imagine his grief.  For her mom and family.  For all of the CFers out there struggling each day.

I think I live a fairly normal life.  Yes, I'm sitting here doing my vest as I type, but to me that is normal.  I'm so beyond fortunate for my health.  I dread the day that I can't run around with my nieces and nephews, or travel with my husband, or play with my dogs.  I don't want this life I have to ever end.  So, I'll sit here and do my vest on a Sunday afternoon, while others may be shopping, or like my husband, playing golf.  These inconveniences make me healthier and will keep me on this planet as long as possible. 


Popular Posts