Yes, I'm Ready

Jay went out with some friends tonight so I figured it was a good time to write a little.  A friend of ours is moving to Virginia and having a going away shindig.  Tonight I am really not able to go out.  I am bummed by this because I would like to see her one more time before she leaves.  However she came up to see us last weekend.  We all went out to eat and watched movies.  So at least I was able see her and hang out with her for a little while.

I decided not to go out because for one I don't like the bar scene to begin with.   I would have gone out with them seeing as the occasion, but the problem is with where my health is at, it would not have worked.  I am on oxygen almost every day now.  Bar hoping with oxygen doesn't sound fun to me.  Also my energy level would have never lasted all night and I would have been miserable.  I would end up bringing everyone else down because it would be obvious as much as I would try to not let it get to me.  Another thing is Jay wants to stay until close which is 2 am.  He decided it would be easier to spend the night down there.  He is probably right but me trying to do that is a huge hassle.  I would have to pack up all my stuff for treatments and the oxygen.  I still have an electric portable one that the company lent me for NYC and they still haven't picked it up.  Having that makes it do able, but I am pretty much wheelchair bound and neither my mom's or gram's house is handicap accessible.  Jay could have picked it up into the house with someone's help, but it just seemed like more work than was necessary.  So I am just hanging out with my kitty tonight.

So as you can see things are continuing to get worse.  It is really taking a toll on me physically and emotionally.  These last few days have been really tough.  Last week after the trip to NYC I was having a really hard time.  I had my oxygen on max and I was still not able to breathe comfortably.  I called for Levoquin because I just finished antibiotics April 10th and am not ready to go back in.  I have been taking that for a little over a week now and I am feeling much better compared to when I started.  Instead of fevers every 4 hours I am only getting small ones at night.  I am back down to 2 liters per minute (lpm) instead of 4 lpm, my coughing is much better and I am sleeping through the night.  Also most of my chest pain is gone.  I was getting a lot of pain along the sides of my chest and in the front.  It hurt between my shoulder blades too, but that is mostly caused by the constant coughing.  Now the huge decision is if I go in next Tuesday or not...  Even though I am feeling better the infection is still there because I am getting the fevers.  I think I waited too long to call for the antibiotics. Next time I am going to call at first sign because I think it would have worked.  I could wait till the fevers get bad again, but even these small fevers are taking a toll on my body.  I am tired all day long and it makes me not want to eat.  In the last couple days I have had moments when I was starving and just ate like crazy, but it only lasts about an hour and then I don't want to eat again.  The questions are......Is being on the couch with 2 lpm my new baseline?  Is there room for improvement if I go in now?  Or would I just be wasting a hospitalization by going in to early?  I just don't know.....

On top of this I am getting impatient about being listed.  I was told that they were going to bring me up for discussion either Friday the 4th or the following Friday.  I called yesterday and I was told I was not brought up.  I couldn't talk to my doctor about it because she had already left for the day.  I am not sure why I wasn't brought up and I would really like to know.  It really frustrates me when I am told one thing and then something else happens.  I was looking forward to actually getting the news, you are listed, but I guess I have to wait at least one more week.  Initially I didn't want this to happen too quickly. I wanted these lungs to last as long as possible… but where I am now?  I don't want to be in this position anymore.  I want to be able to go out to places, go shopping, visit friends, travel, have energy to do simple things like clean and shower.  My pillows have to be a certain way on the couch if I want to lie down to watch TV and sometimes that doesn't even help make me comfortable.  I can't laugh because I start coughing if I do.  The other day I couldn't even carry on a conversation because I couldn't breathe.  I am ready for new lungs.  Ready to actually live.