Accepting a new baseline

Accepting a new baseline is never easy.  What does a new baseline mean you ask?  Well a baseline is your “normal.”  It is where you are at when you are feeling good and at your best.  Everyone’s baseline is different.  In the world of CF a baseline refers to where your lung functions are and how you are feeling in correlation with those numbers.  With CF your lung functions go down over time since CF is a progressive disease.  When I say over time I mean it is not an over night thing.  Although you can have an exacerbation that seems to make a drastic change over night.

My lung functions have slowly gone down over the years with plateaus (baseline) along the way.  I hit a plateau and stay there for a while, which is considered a baseline, then another series of exacerbations can knock my numbers down.  When they get knocked down sometimes I am not able to get back to where I was, thus I hit a new plateau/baseline.  The same cycle continues throughout life.  I have always said that it is a good thing that CF is a slow progressing disease (for the most part) because if I woke up with 40% lung function after being at 80% the day before I would be a little upset.  Not to mention I would not be able to breathe.  With CF being slow you have time to adapt to the lower lung function.

Over the years when I have hit a new baseline it is a blow to the “will to fight.”  It is hard knowing that your lungs will continue to get worse over time.  When I am doing the pulmonary function tests I try so hard to take as big of a deep breath as I can and blast out as much air as I can.  The hard part is that my lungs just can’t do it.  It is like trying to blow up a balloon that has something around it stopping you from doing it.  No matter what you do you can’t blow hard enough to make that balloon blow all the way up and you feel the strain on your lungs while trying to push them to do it.  Your lungs feel heavy.

When we moved from Missouri 9 months ago my baseline was around 1.8oL (+/-) FEV1.  My average over 2013 was around 1.73L FEV1.  My baseline was around 2.00L (+/-) FEV1 in 2008.  I had PFTs (Pulmonary Function Tests) yesterday at my clinic appointment and I came in at 1.53/53% FEV1.  That is obviously down from my baseline from Missouri and from my average over the last year.  I looked back through old PFTs and I have been up and down over the years.  I have had a lot of 1.55’s and 1.65’s and 1.75’s, all depending on if I was sick or not.  A baseline is determined by the numbers you can hit and stay at for a length of time.  As I have gotten older my baselines have changed and seems that they change faster now.

Embarking on a new baseline is always scary and not something you want to accept.  I usually have a good old pity party for myself and then pull up my big girl panties and get back to living.  It is just another dose of reality in the life of CF.  Like the name of my blog says, CF happens.  I thought I was hitting a new baseline but after looking through old PFTs I see that I have been all over the board so now I don’t know what to think.  I do know that my lungs still aren’t sure how to act here in Tennessee.  There are a lot of allergens here.  It rains quite a bit which means mold and the weather changes a lot.  My lungs don’t like any of those things.  I am still learning how to treat my exacerbations here.  Some exacerbations aren’t full-blown need IVs kind but are more just annoying.  I don’t want to use IVs when I can get by without so that I don’t run out of IV options considering I am allergic to a lot of antibiotics.  I am getting allergy testing soon in hopes to find out what my lungs are reacting to since my allergies manifest in asthma symptoms.  Then when we know what it affecting me we can figure out what course of action to take.

With all that said, I am not accepting a new baseline just yet.  I am not pleased with my numbers from yesterday but I will continue to work at getting them higher or if anything keep them where they are and not lower.  CF always keeps you thinking.  I know my body does not play by what is in any text-book so I am a challenge.  I guess that is the only way for doctors and scientists to earn their keep.

Until next time…

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