Enough is Enough

I went back into the hospital on December 2nd.  Again I was coughing a lot, fevers all the time, not sleeping through the night.  I had to go in yet again, but this last hospitalization sucked.  Things were just going wrong left and right.  I am use to hurdles.  I come across them every day and can normally get through them.  When things come at me one after another, and I am not feeling well to begin with…I do eventually break down at times.

This last visit I had a lot of trouble with the Tobi draws.  I have to have blood drawn once a week to make sure the antibiotic Tobi is not staying in my body too long and hurting my kidneys.  So normally after the first dose they take a blood draw after 2 hours and then again at 10 hours.  This is to get the peak and trough.  They do some kind of calculation with the two numbers to make sure the medicine is being filtered out fast enough, but not too fast either.  They want these levels to be therapeutic (have enough to actually do its job).  So normally they do this and all is well.  Not this time.  They give me my next dose and then come to me 18 hours after that one for a blood draw.  This is not normal at all because this is done the next week just to make sure things are still fine.  Not when they are initially trying to figure out the dosage.   I tell her that but she tells me the doctor ordered it because the levels were off just a little so they needed the 18 hour level.  It didn't make sense to me, but I let her do it. Then the next dose they come to me 2 hours after for blood. I was like WTH? Well this doctor misunderstood what the pharmacist wanted and now they were coming in to do it the right way, which is the 2 hour and 10 hour.  They do both of those draws and find out my dose was fine all along.  I am able to go through the rest of the week with no more blood draws.  I don’t have to be checked again for seven days.

The day before I was scheduled to go home, I did the Tobi levels and had x-rays taken of my abdomen.  I was told that my intestines were backed up.  My doctor wanted to get that taken care of before it became a blockage.  I had to mix this huge bottle of Miralax with four Gatorades.  It was horrible and I was getting nauseous from it all.  I was having a hard time getting the last bit of it down.  I was tired, sick and didn’t want to deal with this crap that was making me feel even worse.  I asked if I drank enough and the nurse told me that I had to drink it all.  It was better than getting a blockage and needing an enema.  This upset me, but I figured she was right.  A little while later she came back in to tell me that my Tobi levels were off and my dose was changing.  This meant more Tobi levels.  After the day I had, plus all the blood levels at the beginning of the week, hearing that I needed more blood draws...I just started crying.  It was the straw that broke the camel’s back.

I know it is stupid, but I was so upset.  I have one good vein in my arm that they can take blood from.  It had already been poked and prodded seven times.  I was upset from the Miralax, I felt downright shitty, I was sick of feeling sick and I was so over being in the hospital.... I don't cry often.  I barely ever get emotional about things, but I was just pissed and once I let myself cry, I couldn't stop.  There are very few people I can talk to when I am crying.  I don’t like when I break down.  I feel weak and vulnerable and don’t like to show people that side of me.  I was talking to a friend and she really helped me through it, telling me that crying was OK to do.  I guess part of me knew that it was OK and it was nice to hear someone else say that.   Even though she was telling me these things that I wanted and somewhat needed to hear, I still felt like a complete baby, especially when my nurse came in for the blood draw.  She thought I was crying over her coming in for the blood draw.  That only made me feel worse.  Seriously!? I am not crying over a blood draw!  After talking to my friend and just letting myself cry for awhile, I finally was able to stop and feel a little better.

Everything went well with the new dosage.  The levels came back good and I ended up going home.  I did my second week of antibiotics at home and then stopped.  The coughing and the fevers were gone, but I still wasn't feeling too great.  It seems like every time I go in I feel worse.  I am feeling "good" less and less and when I do get sick I am so uncomfortable I can't stand it.  Just sitting on a couch doing nothing and I can't breathe.  I end up using my oxygen during the day just to feel OK. When I am feeling like this, simple things like cooking or filling/emptying the dishwasher is A LOT of work.  Everything winds me, even a simple bath.  My shower head comes down and I sit in the water and take a shower that way.  It is a lot easier for me and helps conserve some energy over standing in the shower.  So after I was done I was drying off and starting to get out.  I all of a sudden started coughing and felt dizzy.  I knew I needed to sit back down so I started to sit down and the next thing I knew I was laying in the bathtub with the towel around me.  Later on that day I put my hair up and I felt a bump and it hurt a little.  Also all this week I have been off with my sleep and my mood so I am pretty sure I hit my head on the way down and got a small concussion.  This scares the crap out of me.  I was home alone when this happened.  Also how do I know when this can happen?  What if I am driving somewhere and all of a sudden I have a coughing attack?  I knew things were going to worse before they got better and I think I am starting to see that first hand.