And on the 10th day, she posted an update
Hi all:
Yep, that's me eating the most delicious organic blueberries that my friend Laurel Wilson picked and brought to me.
Quick update here as I know some of you are anxious. Sorry I've been so quiet but it's still very difficult for me to type and my words are... well, not always there and certainly not very elegant right now.
First of all, let me share some highlights with you:
Today I actually completed the physical move from ICU to the "Step Down Unit."
We are stepping me down off of the dobumatine, which they originally were using to keep my blood pressure up.
After gaining 30 pounds of fluid post-op, I have been stuck at 10 extra pounds so I am now on an IV diuretic to help me to process the extra fluid away from my heart so that I can lie flat and breathe easier.
This is all complicated by the fact that the new chest tube is still in and has been kinda angry with me (hey, let's ooze ick in the middle of the night all over her jammies!).
They may be moving more of this tube out of me today (they moved some of it a few days ago) as it is making it hard to breathe and not really sucking up that much stuff.
Or they may be totally removing it (my not-at-all-secret hope).
If they remove it, I get to take an actual shower 24 hours later.
I am in the middle of a blood transfusion as I type this. We are doing this because I'm anemic from losing something called hemocrits (third party candidate??).
I had my first biopsy of the new heart yesterday and there is no rejection present.
My doctors are THRILLED with the new heart. It is a freaking Ferrari... but it and all the old jalopy stuff it is now attached to are working to understand each other. As I understand it, this just takes time.
I have a 63% Ejection Fraction now, after walking into the hospital with one sitting at 21%. This heart's valve's are working correctly while my own heart's valves had up and quit. What all of this means is that I've gone from being in end-stage heart failure to being someone who has a heart in her chest that is functioning incredibly well. Normal even. Maybe even above that.
In an hour we will take an SVO2 test to see how well my new heart is distributing oxygen to the rest of my body.
Yesterday they washed and conditioned my hair and gave me an actual bath with wash cloths and hosed me down. Up until then, I had only had sponge baths in my bed. I no longer smell like a wet foot and a I feel like a completely different person.
Some of the bad stuff:
The anti-rejection drugs are as terrible as I've heard in terms of what they do to appetite, taste, feelings of nausea, sweatiness, irrationability, etc etc. And oh my GOD, the headaches.
As it turns out, being sawed in half and wired back together and then poked and prodded for 10 days hurts. And it can be difficult to time things correctly in order to stay ahead of the pain. I thought that my sister Priscilla and I were going to re-enact that traumatic scene from "Terms of Endearment" that I can't even talk about without crying (with Bub in the pivotal and powerhouse Shirley Maclaine role).
I'm only 10 days in and I'm REALLY tired of being jacked with.
I don't like not having my words. At all. Cognitive impairment is a not a good look for me.
The new normal is just that: New. While the heart is beautiful, it is not yet taking me to the point where I feel great. I am more incapacitated now than I was prior to the surgery. But again, this takes time.
And that's about it. Sorry for the lack of eloquence, the lack of any actual descriptive info, etc. I just needed to get this update out.
Love to you all. Please know that even though the operation seems to be complete, the transplant is still in process and I am a work in progress.
xoxoxo,
Andrea