Not to be under-stated is the importance of me continuing to have and do fun things in my life. I try to have a very deliberate balance of blue (appointments) and pink (friends/family) on my calendar. This week I Skyped with both my dad and my little nephew; I visited with my mom and her new cat! I had dinner out with friends; we had friends over for dinner and played a board game; and this weekend I have plans to make soap with my friend Elaine.
|Sully the cat tired out after playing with Aunt Laura|
But as has been my pattern with IVs, my numbers are not getting better and I'm still honestly sometimes having a really difficult time just doing everyday things (showering, getting dressed, talking after walking from one side of the house to the other). My PFTs have gotten to an all-time low. I really feel like my lungs have a mind of their own and it doesn't seem to matter how much airway clearance, exercise and rest I give myself. My only reward for all this hard work is knowing that things might be worse if I weren't doing it!
What I mean about a major problem is that with all I know about end-stage lung disease complications - lung collapse, pleurisy, retaining carbon dioxide - part of me feels like I am waiting for the other shoe to drop.
One scary thing did happen this week, but fortunately went away as quickly as it had come. I often wake up at night coughing or from coughing, and sometimes I end up sitting up in bed to get the gunk out. Also, it's not all that unheard of for me to cough up blood from time to time - it happens about once a month or so, but I'm lucky that although the severity varies, my bleeds have always subsided fairly quickly. There is almost always a discernible trigger (having been around smoke, quick change in blood pressure from laying down or bending over, etc.)
Tuesday night I woke up coughing, sat up in bed and then realized it wasn't the usual stuff I was coughing up - it was blood. It freaked me out because it was one of my larger bleeds and because there had been absolutely no trigger. I had just been laying there asleep! The only thing I could think is that since the dose of my antibiotic had recently been adjusted, maybe a patch of infection broke free and exposed some raw, inflamed lung tissue. Who knows. But waking up to coughing up blood like that is definitely not cool. *Please other shoe, stay on foot.*
So...here's to another week of sunshine and thunderstorms, pollen, cool sunny days and humidity that's just a taste of what's to come...it's springtime in Raleigh.