The Life and Lungs of Kim

Now, I would post this on Saturday, on the actual eve of the new year, but I am happy to report that I will not be at my computer!  I, and the awesome Ms. Joby, are taking a mini-vacation -- starting with lunch tomorrow in Seattle then making our way to the luxurious Alderbrook Resort & Spa  on the Hood Canal (importantly, it's within my mandated 2-hour radius of UW.  I feel like a parolee.).  We'll get our fingers and toes done then have dinner...and on Saturday, we'll meander back to Seattle and end up at the Edgewater Hotel  and likely bring in 2012 with a champagne toast in our room in our jammies (and probably not much later than 10pm - I mean, we're a couple of almost 40 year olds now!  And those whippersnappers better not stay up all night partying on our hotel floor.  Damn kids.).  Then home on Sunday, all refreshed and happy and ready to have fun for the last 3 days of the kids' break. 2011 has been a roller coaster r...

Last week, Jack said he wasn’t going to ask Santa for any presents, he just wanted to ask for him to give me new lungs.  I said that would be a waste of a Santa request, that I’m already on the waiting list and I’d prefer to go through the hospital, rather than get any ol’ lungs that Santa could find.  He looked at me exasperatingly and said that Santa could at least do his magic to get me lungs very soon and without pain. He is incredibly worried about the risk of me getting lungs and wishes we could just hold out for a medical cure for Pulmonary Hypertension.  But the most profound part of our conversation was that he thinks maybe I won’t know how to be a person with new lungs, that maybe I’ll miss this person that I am now.  This was a heart-wrenching conversation, about me dying, the pain I’m going to go through, the different person I will be and how worried he is that I’m not prepared for it.  And he has really made me think about this, that I am a d...

Things I’m thankful for: I am thankful that I’ve been alive to celebrate 40 Thanksgivings. My daughter, who is fiercely independent and strong and is working out how to manage those amazing attributes as she continues to grow into the person I’m already in awe of. My son, who is filled with sweet kindness, worry, love and nurturing.   Although above all else, he’d value me calling him funny.  So…he’s funny. My husband, who is taking on the weight of the world as he continues to be a success at work everyday and return home to not just normal hectic family life, but one where his responsibilities are greatly increased and his emotional load heavy. I am full of appreciation for the values, traditions and love instilled in me from the examples my parents have set and continue to do so. The family and friends who surround me and make this all feel manageable and give me the optimism that I’ll need to get through it.  They are giving me a...

Today is the first day that I see the light at the end of the tunnel on this 11-day cold I've had.  I started antibiotics on Tuesday and I do think they've helped.  My body feels like it's been through a marathon, though -- I'm greatly fatigued, easily short of breath and this cold air outside makes it worse.  I have a tendency to get stir crazy then do too many things when I have a little bit of energy then pay the price the next day.  So again today, I plan on taking it easy...am back home after Jack's 3rd grade conference this morning (summary: he's great at reading and math, pretty good at writing, not so good at being organized) and I plan to take a nap soon then get some baking done for this weekend's elementary school craft fair.  And get ready for all our Thanksgiving guests who arrive on Saturday -- my sister and family and my mom and Jim.  They were very gracious and are staying in a nearby hotel so it should be a fairly chaotic-free visit and I...

As of this morning, I am Active on the Lung Transplant Waiting list.  My Lung Allocation Score is "in the 40s" (on a scale of 1-100, 100 being the worst).  The LAS doesn't mean too much to me -- it is a ranking (currently there are 47 people on the UW waiting list) but still, donor blood type and size are the first things they consider (and geography -- the procured lungs are only good for 4-6 hours once taken from the donor's body so if someone is declared brain dead in Florida, that doesn't help me.  What helps me is someone who is blood type O negative, about 5'8" and likes to ride his Kawasaki Ninja really fast and reckless around the Puget Sound.).  The LAS really only matters to the average bear when you're in the top 90th percentile, a designation that my doctor considered going for but ended up not.  The average wait time at UW is six months.  From here on out, I should only be steps away from my cell phone.  I need to be ready to ...

Still haven't heard from the national transplant folks.  And the only reason I'm writing is because once I've posted this, I'm sure I'll get a call first thing tomorrow morning.  I believe in stuff like that. But I've been busy!  Halloween was fun, look how cute my people are: Jack was Link, a video game character from a game called Zelda that he's enjoyed playing on the Wii and his Nintendo DS.  Charlotte intended to be Scarlett O'Hara but once she put this dress & veil on, there was no way to dissuade her from being a bride. I'm also trying to find a way to have you receive emails each time I post something new but the service I found, Feedburner, is as far away from user friendly as you can get.  Hopefully you can figure out how to subscribe to the RSS feed -- I'd tell you how give you a step-by-step but I don't get that, either.  Anyone out there have suggestions?

I received a call today from the UW transplant coordinator that yes, they have all my paperwork but they need one more blood draw then they'll send it onto the national organization and then I'll get on the waiting list. For some reason, this blood test (HLA antigen, maybe, something like that?) had to wait until they got all my paperwork and approved me for transplant but I don't know why.  So I'm heading into Seattle tomorrow morning to get this done, they'll send it off, I should hear next week when I'm officially on the list. There's also a half hour video of the double lung transplant surgery  at UW and the lung procurement process -- I found it mostly interesting from about minute 14 on (and all the doctors you see are still around -- Dr. Edelman is my pulmonologist, Dr. Mulligan will be the surgeon for my transplant).