The Life and Lungs of Kim

If you’ve been following my Adventures in Lung Transplantation, you may remember that my place on the waiting list is determined by my Lung Allocation Score (LAS).  That LAS is based upon a bunch of test results that my doctors spit into the national United Network of Organ Sharing’s (UNOS) complex formula.  Unfortunately, the tests that weigh heavily in determining the LAS are all focused on lung disease; they don’t account for heart failure, which is what's dragging me down.   There are some awesome medical folks in the Pulmonary Hypertension field that are working with UNOS to “even the playing field” and incorporate factors that show both the lung failure AND heart failure that occurs in PH patients.  UNOS is taking public comment from anyone with a connection to this issue and since you know me, that means you!  Before June 15, 2012, I’d be ever grateful if you could weigh in on these proposed changes in the following way… Click here to submit c...

Sorry about the long absence: this blog has been a testament to the adage “no news is good news.”  I had a surprisingly good winter but this spring has been a little different…not recovering from activity as quickly as I used to, more foot pain, more fatigue in general.  It hasn’t been drastic and my schedule allows for days of recovery time so while I do eventually bounce back, it’s actually less of a bounce and more like a slow pull. I saw Dr. Ralph, my PH specialist, a couple weeks ago.  My echocardiogram mirrors my slight decline in health by showing too much fluid around my heart.  Our treatment plan is to increase my IV drug over the next couple weeks and see if that helps.  I see my transplant pulmonologist (and have a slew of other tests) on June 8 and he’s been working with Dr. Ralph on my current status so I’ll know more then. In the meantime, I had the most awesome 40th birthday party ever; we’ve been enjoying Jack’s baseball games; Charlot...