New Year, Old Me!

2013 was a pretty good year, actually.  Finding out about the rejection really sucked, but I'm trying to see it as a blessing in disguise.  The awesome thing about being in rejection is that I don't have to worry about going into rejection :-)  I have a lot of hope for 2014!

The photopheresis is going fine.  Today marked my 40th treatment.  I feel so much better than last summer even if my breathing numbers aren't improving yet.  Like crazy good.  Like the Old Katie.  Pre-PH Katie (as some of my friends have so kindly pointed out... She's Baaaack!).  My effervescence has returned (love that word John!).  Working my way through year two post transplant is so much easier than year one.  I feel alive, fairly healthy, and strong again.  Crazy Exercise Katie is back too.  I missed her A LOT.

From my last breathing test my lung capacity is 38%.  I don't know if you remember, but right before transplant I was at around 75% with PH.  Interesting, huh?  I couldn't breathe at all with my bad heart (and bad lungs) but my lung capacity was higher.  I was above 80% for a while post-tx but because of the rejection I've lost about half my lung function.  The average person has around 85-95% lung capacity, in case you were wondering.

December 23rd marked 18 months post transplant.  So bittersweet.  I think about my donor family.  I wonder if they're in the local area.  I didn't hear back after I wrote my letter and I'm okay with it.  More okay than I thought I would be.  Not knowing takes perceived pressure off of me to live up to something that I could never be anyway, if that makes sense.

And a quick note about the practice climb... Two people came back down to climb with me and I think the guy felt sorry for me (b/c I was the slowest and the only "sick" person), although he did ask me to climb more stairs.  I said Yes!  He let us go up this ridiculous 2-story spiral staircase to the very top.  Sometimes in life you're lucky... you know an amazing moment is happening so you can really enjoy it.  I was at the top of the tallest building in San Diego (500 ft).  I could reach up and almost touch the red aircraft warning light.  We'd been having Santa Ana conditions, so the sky was completely clear and it was warm.  I could see 360 degree views of the city and it was a full moon.  It reminded me of flying up the coast at night when the weather was awesome.  That and the fact that I had just climbed 32 flights of stairs that I didn't think I could do made it pretty fucking fantastic.  Most people don't get to go up there so I was very lucky :-)

I guess the lesson is that you just have to keep going because you never know what could be waiting at the top!  I really needed something to renew my faith in myself and to remind me to live in the moment.  That did it.

This post-transplant world is both awesome and terrifying.  My goal is to absorb the awesome and push back the fear while not forgetting that the terrors are very real.  I live on borrowed time and I'm very aware of it.  I love this quote:
"I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived.  I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary.  I wanted to live deep and suck all the marrow out of life, to live so sturdily and Spartan-like as to put to rout all that was not life, to cut a broad swath and shave close, to drive life into a corner, and reduce it to its lowest terms."  Henry David Thoreau

So what are my plans for 2014?  Stay alive, keep battling the rejection and regain some lung function.  This is my year to say "yes" to everything within reason (no cruise ships...).  If there's something I want to do or some opportunity that comes along, say yes and go do it!  I'll probably make lots of mistakes but I'll have lots of experiences.  I've said yes a lot within the past few weeks and it's paying off in ways I never expected.  The Universe is weird sometimes.  Besides, you can't have good stories without saying yes!  I have lots of exciting things that are on my to-do list for this year.  I'll keep you posted :-)  I'm also trying to do more random acts of kindness.

And because this has seemed a bit serious, I'll lighten the mood by telling you about an author that my Dad mentioned, Jo Nesbø.  His books get great reviews.  But the protagonist's name is Harry Hole.  I just laughed and laughed.  I'm so juvenile.  So of course I had to google.  This is from wikipedia (I know... the worst source ever but whatevs).  "Hole", Harry's family name, is the name of a historic Norwegian town (Hole, Norway), with a heritage that goes back to Norway's origins in the Viking Age. The name is derived from Old Norse Hólar, theplural form of hóll, meaning "round (and isolated) hill". The word is pronounced as two syllables, with stress on the first (hoh-leh), as is implied in The Bat, where the Australian police call him "Harry Holy".
This is from Amazon: And BTW, publisher insists Harry's last name is pronounced "Hooley;" not "Hole." Sounds a lot better, doesn't it. 

When I was at photo today (I meet the most amazing people who do plasmapheresis and photo) a lady I'd seen before brought in a BRICK of a book.  This little lady is probably about 5 ft tall and is just tiny.  The book dwarfed her!  I tried to see the author and laughed out loud.  I asked her if that was "Pillars of the Earth."  She just gave me a look.  I asked how she liked it.  She said she was skimming most of it.  Oh, it was funny to talk a bit about some of the insanity.  I'm actually really glad I read it so that I can talk about it with other people!!