One of 54

Yesterday, I had my 3-month check-in appointment with Dr. Edelman, my transplant pulmonologist at UW.  Mom flew up on Wednesday so she came with me and, after picking up a coffee and food at a drive-thru coffee stand, we had a beautiful and sunny drive into Seattle, complete with seeing the bald eagle that hangs out on the 520 bridge.

I started at the Pulmonary Diagnostic lab, where I repeated my spirometry test, one of the pulmonary function tests. (I sit in a booth, wear nose clips and put my mouth around a tube hooked up to a computer…then big breath in, shoot that breath out as fast as possible and get all that air out – you keep squeezing it out way past the point you think you can.  Then quick breath back in.  Repeat 3 times.  Get head rush.)  This is a test that goes into that Lung Allocation Score (LAS) but typically, Pulmonary Hypertension patients score pretty well on it and I’m no different – ironically, I’ve got great lung/airway function.  Then we went to the blood draw lab to get blood work done (10 vials of blood this time, still not close to my all-time record of 18 vials in one sitting).   I recognized another woman in the waiting room from the UW Lung Transplant Support Group I attended last September (she had a lung transplant 5 years ago) and reintroduced myself.  While waiting for me, my mom had a very informative and fruitful conversation with her and her husband.  Then we went to my appointment and after waiting in the exam room for TWO HOURS for Dr. Edelman, it was a quick 20 minute visit.

Ever since I received my LAS in early November, the nurses have been very cryptic about releasing that number, or where my place is on UW’s waiting list.  I understand their reluctance to share, as the number only matters in relation to the others who are on the ever-changing waiting list and could cause anxiety about one’s placement but I have been curious.  Thankfully, Dr. Edelman easily shared the information: my LAS is 31 and most people on the list are in the 30s-40s (though the scoring scale is 1-100, 47 is a score that puts you up in the 90th percentile, the most critical cases).  Out of the current 54 people on the waiting list, I’m down there “in the 50s” which is obviously at the very bottom and means I ain’t getting lungs any time soon.  I am stable right now (as reflected in my 6-minute walk test, my spirometry and my own assessment of my health) but since Pulmonary Hypertension is a progressive disease and I’m at the maximum drug therapies available to treat it, I will of course remain on the list.  If I have a dip in health at any point, my LAS can change to reflect that and bump me up higher on the list.  There was no talk of removing me from the list.

But if lungs were to come in that didn’t work for any of the 50 or so people ahead of me (again, the lungs have to be blood type O, which quickly narrows that pool of people down – then size is the next big eliminator and I am on the tall side of the list so that criteria also eliminates a bunch of people), I could get The Call. The comforting thing about this is that those lungs would be a great match for me – because I’m not knocking on death’s door, they can afford to wait for the “perfect fit.”  I imagine this to be like picking out some awesome shoes to wear to a cocktail party: if you start looking a month out, you have time to be picky, to get a pair that don’t pinch, aren’t too high of a heel, the right color, the right price.  If you wait until the day of the party and you NEED those shoes in a matter of hours, you’ll sacrifice something just to be able to have shoes to wear. 

The other reason I believe that I’m going to be hanging out with my current lungs for a while is that there just aren’t that many donor lungs.  UW is the one lung transplant hospital for our region (Alaska, Washington, Idaho, Montana and Hawaii) and they only did 47 transplants last year and so far this year, they’ve only done one!  Of course, the lungs come in spurts so that number could increase quickly but my assessment is that they aren’t going to transplant folks who are “in the 50s” anytime soon.

So my next appointments are: in May, echocardiogram and appointment with Dr. Ralph, my Pulmonary Hypertension specialist.  Then probably in June, I’ll repeat yesterday’s tests and appointment again with Dr. Edelman.  In the meantime, I plan to continue my working out and hopefully not have any bumps in this stable road I’m on.   And focus less on the inevitable transplant and more on finding those perfect shoes for my 40th birthday party next month.