The Life and Lungs of Kim

Ah, September…crisp fall mornings…yellow school buses…leaves turning brilliant reds and yellows and then falling…reestablishing family routines...political signs in yards…and for me, getting back into lung transplantation mode.  I kind of took the summer off from worrying about the when and how and I backed away from my necessary hounding of doctors to get things done.  I had a blip last month and in addition to all my meds, I’ve added more.  You say you need a review of my meds?  Why, I’m happy to oblige! ·          I’m on three Pulmonary Hypertension targeted therapies, once of which is an IV medicine  (yes, that's a picture or two of me on the drug's website) so I have a central catheter in my chest that’s attached to an infusion pump I have on my person 24/7. The other 2 are oral pills.  All are designed to help open up the blood vessels in my lungs to make it easier for the right side of my heart to...

It has not been the best week ever. About 10 days ago, I noticed that I had some extra fluid around my belly so I mostly said to myself "Huh. Look at that." and kind of increased one of my diuretics as I saw fit.  Belly got bigger (at this point, Charlotte thought it fitting to call it Alexandra -- I looked 6 months pregnant -- a round, hard water baby belly) and I felt increasingly fatigued. I finally made an appointment to see Dr. Ralph, my PH specialist at UW, for Wednesday.  He prescribed another (this makes three) diuretic for me to take for 4 days to see if we could get rid of the water baby -- we were looking for at least a 5lb drop off.   I took that Metolazone for 4 days and am down at least 10 lbs. now and am happy to report that Alexandra is gone.  I feel a little...funky...still, but no more pain of  carrying around all that extra weight. My doctor also prescribed oxygen for me at night so now I'll sleep next to a big ol' concentrator and have...

I shall remain at (or very near) the bottom of the UW Lung Transplant list for the foreseeable future.  As you may recall, my transplant pulmonologist, Dr. Edelman, was appealing to UNOS to grant me an exception that would propel me to the top of this region's waiting list (into the 90th percentile).  On June 28, I had my (fifth) right heart catheterization and Dr. Edelman was hoping that the results from that test would provide convincing and irrefutable evidence that I need new lungs.  He wrote up the test results and waited to hear from UNOS.  After about a week, they said no dice.  He wrote up MORE information and after about a week, they again said no dice.  Third time's not a charm this story; I still did not get the exception so I'm going to continue my glacial pace of waiting...and waiting...and waiting... (although, UW has really upped their pace of transplants this year: they've done 26 lung transp...

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 ...