The Life and Lungs of Kim

I had my Right Heart Catheterization today...the procedure went very smoothly.  As I understand it, my test results still don't quite meet the threshold needed to put me at the top of the lung transplant waiting list but that's just how I interpret them; I haven't talked to my transplant pulmonologist about the results and what the next steps might be.  I'll report back here when I do!

That is the sentiment that you'll want to give me when I get The Call that there's a donor. There will be well wishes, prayers, and hopes for all the good things on this new horizon that I don't have today: watching the rest of you run your half marathons (I mean, I'm excited to be *able* to run, I just don't plan on doing much of it); sprinting from ride to ride at Disneyland with the kids; walking carefree through Nordstrom; taking up tennis, etc.  And these are all wonderful thoughts to share with me.  They reflect the love and hope of everyone out there that I will be rid of this horrible disease, Pulmonary Hypertension, and can start planning for a bright future. But I am a little consumed of late with that time between The Call and the eventual hike with my family to Snoqualmie Falls.  What exactly happens during that period is unknown but we do know I need to get much, much worse before I get better.  And it's not this current gradual...

The gradual crumminess I've been feeling reached a peak yesterday -- woke up with extra water weight (a sign that my organs are having a hard time moving fluid around) and a headache.  Tried to rest it off with morning laziness, then tried to power through it running a few errands...but by 1pm, my oxygen saturation level was  pretty low (in the mid 80s at rest -- normal people should be at 99%, I'm usually in low/mid 90s) and I was feeling absolutely horrible so Scot came immediately home from work (and I cry a lot when I feel horrible so I was super pathetic when I called him), Jen picked up niece Zella (who is staying with us for the week) and she also picked up Jack and Charlotte from school and took care of them all afternoon/evening .   Things were rough yesterday afternoon but I was finally able to keep a big dose of my diuretic down by 3:30 and was heartened by frequent peeing all evening.  For dinner, Scot ordered chinese food and we aske...

It took two weeks of titrating but I am now at my new dose of Remodulin (100 ng/kg/min).  It’s been moderately uncomfortable while my body adjusts to this new dose: foot pain, headaches, fatigue.  Or perhaps those are just the symptoms of being so tantalizingly close to the end of the  school   year BUT NOT THERE YET.  The Nuneses: not the best with patience. I’ll continue to straddle this line between the medicine providing therapeutic results (opening up the blood vessels in my lungs) versus withstanding the increasing side effects.  At some point, the line of return is diminished as the harsh medicine disrupts other body functions; it doesn’t much matter if blood can pump through your lungs marginally better when the extra fluid that collects in your body continues to put strain on your heart.  Or if you’re in constant pain. I saw Dr. Edelman, my transplant pulmonologist, last Friday (June 8 th ).  He had talked to Dr. Ralph about my ...

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 ...