Still Learning

Holding on to my "zen" just before surgery

I've been home for a week now and am still recovering from the embolization. I may have dodged the general anesthesia bullet, but each of these procedures seems to come with its own unique recovery obstacle. This time it happens to be oxygen, that tiny little molecule that can actually make a big difference should you start to run low. Oh, the things we take for granted.

A stipulation of leaving the hospital last week was that I had to come home on oxygen and use it whenever my level dipped below 90%. This has been a humbling experience in so many ways and has yet again shown me that CF can still throw me curveballs. Over the past week, I have been able to decrease my oxygen use, but had to learn some of those lessons the hard way; low oxygen is no fun. 

Yesterday was my CF check-up which went well for the most part, minus the small amount of hemoptysis (bleeding from my lungs) I had when I got home (they were so aggressive with this embolization that I shouldn't have any bleeding for a long time, so it doesn't quite make sense.) I skipped PFTs since I was only one-week post-embo, but I did do another "walk test" of which I failed. It turns out I do still need oxygen when I'm walking anywhere for more than 4 mins. Rats!

It isn't normal to still be de-sating (dropping oxygen levels) so they ordered an x-ray which did not show any explanation. So I shall continue trying to cultivate a friendship with my handy dandy O2 tank and see what happens. I left the hospital yesterday planning to do one more week of the IV antibiotics, however, my kidney function is creeping up so we're waiting to see what my blood tests show tomorrow.

Back to oxygen tanks and humbling experiences, such as the CF Walk last Sunday. It was a learning experience for sure and one that I know I'll grow from, but lord was it emotional torture!

The walk happened to be my first time leaving the house since I'd gotten home from the hospital last week. I was still really tired, a little weak, and still on O2. Skipping the walk was NOT an option for me, so I was forced to attend with my O2 tank and surrender to sitting in a wheelchair for the actual walk part. Ahem, pride, you're going to have to be swallowed.

Like I told my team, this was particularly challenging because for months I had been envisioning myself as an energetic, healthy, positive example of what being 35 with CF could look like. Not to mention I had been training for months and had easily been walking 3 miles on my treadmill just a few weeks before.

Instead, as fate would have it, I showed up with my oxygen tank and wheelchair, looking tired and somewhat defeated...like a 'poor, sick girl' to a CF community who had no idea that it was all circumstantial. It was rough. I avoided the other CF families as much as I could and in the end I survived and will be better for it.

I survived because I had such a phenomenal team rallying behind me (or in front of me depending on how fast I was being wheeled.) I cry just thinking about all who showed up for Team Pia Vita that day. What an incredible and diverse group of support--all of whom I love dearly. They not only made me smile and laugh, they also made me feel supported and accepted. Mark couldn't make it unfortunately because he had to switch his day off in order to be at the hospital with me for my embolization, but he was there in spirit.

The cherry on the sundae was that my mom (who is still recovering from her femur surgery) was wheeled right beside me. Of all the days and all the ways, what are the chances that both she and I would end up in wheelchairs together on Walk day?!?! You couldn't make this stuff up! But I loved having her by my side...a silver lining indeed.

A few more lessons I took away that day...

1. It's far easier to power through an obstacle with a support system who stands behind you and cheers you on no matter how disabled and sickly you look...it's actually quite a gift! 
2. At the end of the day, it doesn't matter what the outside world thinks of me. Those who matter most know my true self. (Yet for some reason I couldn't bring myself to be photographed with the oxygen tubes. Baby steps people...)
3. I will not pass judgment or assumptions next time I see someone who looks 'different'. I have no idea what their story may be; we're all human and we all have bad days.  

Thanks to everyone's donations we won
the silver sneaker award!