The Good, the Bad, and the Ugly

My sister the health care ninja

Some good news: While I've had some tentative discharge dates thrown around over the last 2 weeks, it's looking real likely that I'll be out of here by the end of the week. My strength continues to improve; I can do several laps of the unit at a time and I'm doing it 3-4 times a day. My fluid load is way down, though I have a little ways to go yet. I've got no chest tubes and no IVs and can stand without help. My sister Jaimie is here and Melinda is going to be back up this weekend.

Some not so good news: I still get quite short of breath very quickly, and it was determined this morning that my diaphragm is partially paralyzed. Essentially, the left half of my diaphragm doesn't move when I breath. It's likely that a major nerve was damaged during the surgery. It's possible for it to heal, but there's no guarantee, and it's not going to improve for at least 12-18 months. The pain from having my sternum busted open is pretty bad, and with much of the remaining fluid settling in my lungs, the nasty cough doesn't help.

Some...other news: My surgical sites had been healing nicely until a few days ago, at which point they started oozing at different points. Nothing dangerous, but real disturbing to wake up covered with blood, and then having the dressings soak through every couple of hours. Anyway, that seems to have resolved.

Still Here

It feels like I'm burning through my luck points. I suppose that having to be in this position at all Isn't particularly lucky, but things beyond my control seem to be falling into place for me right now...

1. I got a heart without having to get the LVAD. That was huge, and not something anyone was expecting.

2. My progress in recovery has only been hampered by some very simple, common issues. There have really been no major setbacks.

3. Despite the fact that my kidney function is keeping my anti-rejection drugs at a relatively small dose, as of the biopsy yesterday morning there is exactly zero sign of rejection.

Awake!

4. I've had people here with me every day since the surgery. The first thing I remember seeing when I woke up is my lovely wife's face, and I've had to kick people out to sleep rather than feel alone for a moment.

5. While we're at it, my wife and friends have gotten a 3 bedroom house for my long Seattle stay. Tons of awesome people have donated to our fund, and both of my sisters will be out here soon. It has to be luck that I've found myself surrounded  by so many amazing people, I can't think of a thing I've done to deserve this.

So, right now my goals are to unload a few more liters of fluid, get my chest tubes out, and get stronger. The fluid seems to be finally coming off at a good pace, starting about 48 hours ago. The chest tubes that drain the chest cavity will be removed once the daily amount of drainage is about half what it is now. I figure they go in the next couple of days. Building strength is the hard part. I need to get up and out of bed and walking the halls, a feat I only first accomplished this past Saturday- that's a week since I woke up from surgery. It's a whole production with safety belts, walker, IV tower (pole does not do this thing justice), and one or two people to chaperone me. All of that for maybe 5 minutes of walking. And it is hard. I find that sitting up in a chair for much more than an hour drains my reserves, a walk around the unit is just exhausting. But it's getting better, and I know it will get easier the more I do it.

I miss these guys hard.

Today on my walk, or while I was posted up in the hall catching my breath, a man maybe 10 years older than me came around the corner and asked if I'd just gotten a new heart. I told him I had and he offered his congratulations. I asked about him, and he told me he'd gotten a transplant 6 years ago, and now it's going bad, so he's here hoping for another. But he immediately followed that Up by saying that the last 6 years were the best of his life.

A lot of people want to know if I feel 'different'. I'm not sure that I do, other than feeling lousy with pain and weakness. I will say that I try not to spend too much time thinking about the fact that there is a new heart in me, and when I do I don't get much past the fact that I probably shouldn't be here. But I'm still here, and my luck is holding.