Winning Friends & Influencing People Through the Clever Use of Steroids

Photo of a masked Andrea in pigtails and purple hoodie, outside of the hospital in the fresh air

So much happened today, you guys!

It started with another wonderful visit from a beautiful friend who brought me a warm croissant and a Starbucks skinny latte made with half & half... and it wasn't even decaf! And as if that wouldn't have made me happy enough through natural chemistry, ALL of this stuff happened:

  • They removed the Dobutamine drip.

  • They removed the CHEST TUBE OF OOZING DEATH.

  • These two things made me wireless again-- I've come completely untethered!

  • They removed the dressing from the Great Chest Tube of 2018 That Worked Properly and removed all of the internal stitches and external wiring. I'm not even kidding when I say that each time they pulled the old internal sutures out, they were perplexed. Because what went inside of me as straight heavy-duty thread came out of me curled up/crimped. Quick, someone get a venture capitalist on the horn because this Sci-Fi script is writing itself!

  • They took me off of IV diuretics. I will now go back on the same oral diuretic I was on pre-transplant. This is like going from barreling over Niagra Falls wearing nothing but suspenders and a smile to the way I "kayaked" in my "exercise costume" pre-transplant. 

  • The lab work came back and at a cellular level there is no sign of rejection (previous results were for visual only).

  • We did my first training on a glucometer to monitor my blood sugar. I don't have diabetes now and I didn't before the surgery... but it is something we will now have to watch for (due to meds, I think?). I don't think this is forever though and just a small price to pay.

  • Derek and I had our first training on all of my post-transplant meds: Learning med names, dosage, ability to recognize each pill on sight, timing, long and short term possible side-effects, etc. 

  • They also looked up the monthly cost of the medications for us, and while we had seen horror stories about drugs costing upwards of six figures a year... on my medical insurance, our cost is $80 a month. I think we likely spent more than that before the transplant. Still, if you want to start a Go Fund Me, we could always use it for our Africa trip! (Totally kidding and don't you dare!)

  • Derek and I began our first training for post-transplant home life with the Transplant Coordinator, Wei. Sue was originally my Transplant Coordinator-- and she got me a new heart. Now Wei will help me to keep it! And she likely hasn't even begun to suspect I'm on Methamphetamine yet.

  • I worked with PT and did multiple fast laps of the floor along with arm and leg exercises. And yes, there were unchoreographed Jazz Hands and one well-placed fan kick. Because of course there was.

  • They let The Boy take me on a date outside this evening. It was my first fresh air in 12 days! We could see the water and hear the gulls squawking and I felt almost normal again.

    And... I hope you are ready for this this lil nugget: AS LONG AS WE CAN COMPLETE THE FOLLOWING THINGS, I WILL GO HOME EITHER FRIDAY OR MONDAY.

Things to DO:

  • Finalize glucometer training.

  • Complete post-transplant training with Wei, my new Transplant Coordinator. (I’m certain Sue will miss me!)

  • Take actual shower with OT supervision and get Derek certified on how to supervise my shower as my primary caregiver. For what it's worth, I have no idea how we do this without all 3 of us in the shower together, which makes me believe I'm truly baaaaa-aaaack because normal people probably can envision other possible scenarios.

  • Do stairs with PT supervision.

It's an ambitious agenda but hopefully we can do this thang between tomorrow and Friday morning and spring me out in time for the weekend. (For those who have signed up to work shifts as caregivers at our place in the P'bo, look for an email to come from Derek soon to begin firming up that schedule.)

Now it's 10 p.m. and I'm exhausted but still absolutely emotionally high from a wonderful day of triumphs (and from pain meds + steroids). Yes, there was some icky stuff along the way in the past 24 hours as well, including me finally taking a stand about the Oozing Chest Tube of Death at about 10 pm last night and having a fairly intense but refreshingly honest face off with the on-call doctor, who was super nice and not even a cardiologist. Although he's probably re-thinking his field of specialization as I type this (perhaps his entire career path). 

Side note: Steroids are wondrous drugs. They really do bring out Evil Andy, who gets even more stuff done than non-Evil Andrea, who is by nature still at least a bit mischievous. Ask your doctor if evil is right for you!

Many of you have asked how I'm feeling and it's really incredibly difficult to describe it in any way that you would understand if you've never been through this. But here's my favorite analogy to date: I feel like I've been hit by a Ferrari. But the Ferrari sustained no upfront damage in the crash... and you guys, I get to keep it and drive for years!

And oh yes, you better believe that this little baby is going to corner like she's on rails.

Andrea OggComment