Saturday, October 15, 2011

A Beautiful Fall Day for Pondering

Today I sat out back watching my dog sniffing around and digging in the dirt.  I was on the last step of the deck stairs, comfortably dressed in sweats and socks.  The cool breeze felt wonderful on my face.  I sat there admiring the leaves changing, thinking how pretty they looked against a steel gray sky.  This is the reason I chose October for our wedding.

Then my mind drifted to how I felt physically.  I took a somewhat deep breath (for me anyway) and let it out slowly.  I could fill myself up, apparently halfway, according to the PFT machine.  Inside I could feel the rumble of some mucus.  Totally different than only a few days ago when I was crystal clear of goo.  My exhale had a hint of crackles in it.  I lasted a whole 4 days off of IVs before the mucus came back.  But I don't mind.  You see, I got over a week of clear, unobstructed airway inhaling.  I didn't hear crackles, I didn't feel crackles, and my doctor said I sounded amazing.  That was the best part.  I sounded amazing!  Me, going through a transplant evaluation sounding amazing!  50% of my airways were working.  How awesome is that, and considering I don't think I have ever been above 80% it is REALLY amazing.

However, this 50% and the 50% I was at 3 years ago feel entirely different.  How so I bet you are wondering? Well its not just a number.  Yes, the number itself is important for many reasons, but it really doesn't paint a great picture of how you feel.  The only thing that is similar is my coughing.  This type of cough I have had forever.  Sometimes it is mucus filled and other times it is entirely inflammation.  But either way the cough is there.  The differences are a much longer list....

Energy level - now I NEED 10 hours of sleep to function and not be miserable.  Then I was sleeping 5 maybe 6 hours a night and functioning like a champ.

Lung pain - it was almost non-existent 3 years ago.  Today I am always in some sort of lung pain.  It varies from just barely there to OMG where is the Motrin.

Mucus - I used to rarely cough stuff up.  It was there sometimes but it was very difficult to get it up.  Now (notwithstanding this resent clean-out) I can cough up goo almost daily.  Before green scared me.  Now it is a color I am used to seeing.

Exercise - though I couldn't run a mile, I could dance all night long, with a few breaks for coughing fits and some rest.  Now even the thought of dancing all night makes me want to sleep for a week!  Also the need for O2 with exercise is new from this last 50%.  Yes I did monitor my O2 and though I don't dip far I still go into the upper 80s, sometimes lower (like class on Tuesday when I walked in my O2 was 84% lol).

Travel - Loved it and it didn't bother me at all.  I could travel all the time and I didn't need to rest up like I do now.  It takes me a few days to recover from traveling now.  Whether its plane, train or car I am exhausted after visiting family and friends.  Mainly because of lack of sleep which is in point number 1.

So you see, I might be at 50% lung function right now, but I feel more like my baseline of 40%.  I guess on October 26th we will see what I am at by then, as that is my follow up transplant appointment.

1 comment:

  1. Amy - I so know what you mean.. my doctor says "oh good, your numbers are the same as three years ago.." , but three years ago I was working full time, and now I'm not. ..three years ago I would plan a trip to Vegas or Madrid without much thought. Now all i think about is how tired will I be and how much smoking is there going to be?

    I'm sooo glad the numbers are holding for you(with a few increases even) - but sometimes it is all about how you really feel.