Tuesday, June 28, 2011

Status Update

If there's a person out there still interested in my maladies (I know I'm certainly not one of them), here's the latest:

It appears at the moment that I will not need the invasive surgery that just last week I thought was inevitable.  The idea was that my lung wasn't healing as quickly as they hoped, and that the surgeons would have to take a chunk of stomach fat and pack the hole in the lung with it.  That would have required another week-long hospital stay, 2-3 months of recovery, and probably ruined my summer!
As of today, I may be able to save August (to quote the great Chief Brody).  They are going to go through my throat and install a little valve-type device and try to plug the leak that way.  And that is being done on an out-patient basis, July 11th.  Also, I got the call today to stop taking my IV antibiotic (which is actually on schedule) because it may have been causing my white blood cell count to drop.  So, I also get to stop taking the vile-tasting antibiotic I was taking.  This, of course, does leave me at a slightly higher risk for infection, but the steroid dose is much lower than it was back a couple months ago when I got the severe infection that landed me in the hospital with brown ooze coming out of my lung, so that should help.  Otherwise, I just have to keep washing my hands, I guess.
I also still have the chest tube in, and my job now to to be mindful of that.  If the stuff coming out starts getting cloudy, I have to let my doctors know, because it probably means infection.  That is at least a good fall-back.  Last time, I had to wait until I could barely move before I went back.  Now, I just have to look to the tube.  Still, I have faith this time that I can remain relatively healthy.  If not, well, I'm screwed.
I've mentioned how supportive and helpful virtually everyone I know has been (and continues to be), and it's still amazing how much it helps me out (You have no idea).  Hopefully, the end is in sight here, and we can all go back to the way things were before.  I can be bitter and alone, and you can all feel bad about that, instead.  I know that day is coming.  You know why?  Because now I have real help.

Saturday, June 04, 2011

Update - It's What Time?

I used to think I could sleep through anything.  I used to think I had a touch of narcolepsy, even.  I've gone to see a movie and literally slept through the entire thing.  I slept through a whole half-semester of The Brain & Human Communication.
Now, I'm on a very high dose of steroids, and it is 6:00 on a Saturday morning, and I am wide awake.  I have nowhere to go and nothing to do today, but I am wide awake.  And have been since 2:00 a.m.  The steroids just make the mind race and you just do not fall asleep.  The bright side is I saw X-Men: First Class yesterday and didn't fall asleep.  Bad-ass movie by the way.
So, anyway, I'm home now.  Got home Wednesday, June 1st, two months after my birthday, which I was also hospitalized for.  So, it's been a long road, and it seemingly is getting longer.  Right now, I have a tiny plastic bottle attached to my side that collects what fluid remains in my lungs from the infection, which I have to empty out every day.  I have an IV line in my arm that I have to infuse with an antibiotic every day for a month.  Myself.  A nurse is scheduled to come to my apartment every day for as long as I need it to change the dressing on my side (which, BTW, steroids tend to retard the healing process), and one who comes every few days to change the dressing on the arm.  And I have billions and billions of follow-up appointments with various doctors.
So, that's the physical update.  Mentally, I am extremely anxious and am so afraid of catching another infection that I am a half-step away from Jack Nicholson in As Good As It Gets.  I wash my hands constantly, but never feel like it's enough.  Maybe it's because I can't get a decent shower with all these dressings (Seriously, I will never take a shower for granted again), and I know the steroids are doing their part, too, but whatever the reason, I am doing my best to not go back to that hospital, but it's driving me a bit nutters.
I think part of the problem is that I have a need to live my life, but I also need to take things easy and let my body heal.  I know in my mind it will heal, and I have been told that, in a few months, after the steroids have been tapered off to the point of almost nothing, I will have kicked this.  I know all that.  But getting there is not half the fun.
There we are, then.  I am trying to take it slow and steady and all that, and I guess I am doing okay.  Hopefully, I can keep doing okay with very little sleep, crummy showers and high anxiety.  I know I sound like I'm complaining a lot here, so let me close with this; I can.  I can do okay.  Maybe not awesome.  Maybe not amazing.  But I can manage okay. 
And maybe, each day will get a little more okay.
And maybe, one day, I will even sleep.
It's the little things.