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.