Two Month Lungaversary! And, Donate!

Last weekend marked my two-month lungaversary.  It is a little stunning to me that it’s only been two months since we got The Call that Saturday evening about a set of lungs that may work and that I should come into the hospital to start the process.

On Monday, October 15, I was granted an exception to my Lung Allocation Score and that put me at or darn near the top of UW’s lung transplant waiting list. Seven weeks later, I received my first call that there was a potential match and that I should come into the hospital…but after 18 hours of waiting, the donor lungs were too damaged to transplant so I was sent home.  The next 10 days after that are a blur: lots of holiday gift buying, decorating, planning; busy kid schedules; a brief respite from the hustle with a restful and luxurious visit to a spa, followed a few days later by an ambulance ride to the ER for some stitches in my chin after passing out. 

On Saturday, December 15, we got The Call Part Two – Scot and I were at the hospital by 6pm (I said goodbye to Charlotte at the Rees’ and Jack at the Britton’s) and mom arrived at UW by 11pm.  We got a not-too-bad night’s sleep then I was wheeled down to the OR prep area and off to surgery by 6am.  

And then, my world changed.  

I've read and re-read Scot’s chronicle of events to determine what happened and what I remember, but I still haven’t sorted through my hazy memories and the various delusions I created during those first few weeks.  I’m afraid, to an extent, of opening up that horrible and debilitating anxiety again – it was terrifying, some of the things I went through, both physically and psychologically.  And some of the things were fascinating, like experiencing what it’s like to learn to breathe or being alert for a few seconds and then feel drained to the very core -- exhaustion like no other -- from just opening my eyes for that short period.  

But more on all that at some other time.

After 41 days in the hospital, I came home and these past 3 ½ weeks have been wonderful: I’m stronger, feeling like me more and more, starting to look forward to things I haven’t even considered for a long time, like fun family vacations and taking up tennis and what do I want to do with my life?!  Though before I get too antsy about these things, it’s a good reminder that it’s *only* been two months and I have a ways to go before I can really start to move forward.  And with that, I should go do my physical therapy exercises!

BUT BEFORE I DO…the real reason I wanted to write today, other than to commemorate my 2-month mark, is to offer you one more opportunity to help.  A friend asked me to suggest if there was a place that folks, especially those far away but engaged in my lung saga, could send money to help with others who may not have an awesome support system like I do.  I've been thinking a lot about this and though there are a few charities that are near and dear to my heart, I've concluded that a donation to LifeCenter Northwest is the best way to honor me and, way more importantly, my donor and her family.  

LifeCenter Northwest is one of 58 federally designated organ procurement nonprofit organizations.  They are the ones who talk to the potential donor’s family about donation -- and provide that family support during and after.  They manage the organ and tissue allocation and recovery process and coordinate all the different recipients.  If you are so inclined, here’s the link to their financial contribution form: http://www.lcnw.org/financial-contribution-form/

Or, a close second is a donation to the Pulmonary Hypertension Association – they have been a phenomenal resource as I navigated through the course of my disease these past 6+ years.  The support they provided me, whether it was their basic education about PH, materials, support group leader suggestions, conferences, telephone calls, personalized notes, has made me part of a community that I dearly cherish.  They are also nationally ranked as one of the highest rated charities (per Charity Navigator) in terms of their accountability, transparency and financials so you can feel great about giving to them, knowing that it's going right back into their program goals.  An easy online donation can be made here: http://phassociation.org/Donate

And for those who might be considering buying me a birthday gift in a couple weeks, a donation to either of these groups is at the top of my list!   

And now, onto the treadmill...