A Change of Season

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 pump blood through my lungs to get it oxygenated.  All have various side effects (an aside about my side effects: the most prominent side effect is common among us PHers, which is a tan or reddish hue to the skin.  I’m lucky because I look tan, which VERY ironically gives me a pretty healthy look.  But people comment on my tan ALL THE TIME.  It’s passable in September but come February, I’m going to be eyed suspiciously, like I’m always coming back from an exotic cruise or (gasp!) a tanning bed user.  This may be the only thing I’ll miss about PH after I get my new lungs.).

·         I’m on three diuretics.  Because my heart is struggling to move oxygenated blood through my body, I have a tendency to quickly pile on water weight which is very bad (the kidneys see the low blood flow coming through them and send out the signal that I need to hold on to any and all extra fluid).  We just added the third heavy duty diuretic last month and I take it every other day as needed (when I’ve put on 2-3 lbs overnight).

·         I’m on blood thinners, potassium supplements, anti-diarrheal meds (the flip side of the awesome tan side effect), sleep aids.  I have a list of do not eat/drink food and herbs and over the counter meds that I have to pay close attention to.  And also starting last month, I’m now hooked up at night to an oxygen concentrator.  I’m still adjusting to sleeping attached to yet another device and having the cannula in my nose and wrapped over my ears isn’t the best thing in the world but hopefully it’s helping my heart from having to work too hard as I sleep.

So that brings us to today, where I had my 3-month check up with Dr. Edelman, my transplant pulmonologist at UW.  He is going to start the exception process over again, since now I’ve added a new medicine, supplemental oxygen, and last month’s 6-minute walk test was the worst ever – obvious signs my disease is progressing, even though today, I’m feeling pretty good.  One my of test results from my Right Heart Catheterization back in June should’ve triggered an automatic exception so he won’t let up this time and if they deny the exception, there’s an appeal process that includes a request for a teleconference between UNOS physicians and the UW team so they can get on the same page.  If the exception is still denied after that, I may have to repeat my Right Heart Catheter test.

As of today, I’m number 43 on the waiting list of 52 people waiting for either a single or double lung transplant.  If granted, the exception would propel me to the 90^th percentile of that list where the waiting time can be very short.  I’ll keep you updated on this process…and in the meantime, I’ll update my emergency contact list so it’s current and look forward to enjoying all the other sights and smells of early fall.