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...

I've been the leader for our area’s Pulmonary Hypertension support group for the past couple years.  Some of my duties include organizing our meetings each month; lining up sponsors for food; arranging speakers to address a variety of topics, like emergency preparedness, low sodium nutrition, PH basics, pulmonary rehabilitation.  Some of the members have Idiopathic Pulmonary Arterial Hypertension like me.  Some have PH secondary to some other disease , like scleroderma or other lung diseases – their primary disease often is manageable but it’s the PH that’s causing their health to  decline  rapidly .   Some of us are on oxygen full time, some only while sleeping, some only as needed, some not at all.   We range in age from our 30s to 80s.   We all have families and caregivers and lots of doctor appointments.   We are often tired and find frustration in many things, including trying to explain to others how serious of a condition this is ...

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....

Today was my last day of Evergreen Hospital’s Pulmonary Rehabilitation program , celebrated with a certificate, a graduation cap and a speech!  I started rehab back in March of last year then abruptly quit in May when I landed in the hospital with a line infection.   I then took the summer off (to play with kids…and, sadly, spent another 8 days in the hospital) and resumed the class in September.   Insurance will only pay for 36 sessions and even though I switched from “rehab”, i.e. recovering from my bad winter health to “prehab”, i.e. gearing up for a lung transplant, insurance doesn’t recognize the difference.   I did, however, make sure that after my lung transplant surgery, I can do another 36 sessions because I’m certain I will need that to get back into shape. Evergreen offers a post-rehab program called “Power Exercise Class” and that program has more people, less monitoring (i.e. no blood pressure cuff unless you’re looking really unwell),...

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...