There's no place like home...

So I arrived home from MUSC Saturday evening after a long 4 days and 3 nights in a hospital bed.  The trip was not quite what I had imagined it to be.  I guess I was thinking they would wave their magic wand at me, and poof, I'd be well.  It didn't quite go like that.  


Upon arrival, I was given a room, a hospital gown, a nurse, and a cardiac diet.  Yes, I said cardiac diet.  I later discovered the diet was for my chest pain. I'm guessing they didn't quite understand that it was actually LUNG pain.  ;-) They did their best to make me comfortable and I began to rest and wait for "the action." 


My hubby and son hung out with me for quite some time. So nice to have them with me.  Eventually though, our timer (as we call our son) began to tick and they were on their way to the hotel.   So I was left alone with my thoughts... 


Eventually the doctor came, examined me, and decided to start me back on IV antibiotics (internal groan.)  Mind you, I've just finished 12 weeks of that mess.  He wanted to try me back on Amakacin, which is quite popular in treating NTM, but I've had an allergic reaction to it in the past.  The treatments would only be three days a week (yippee!!!)  He also started me on Tygacil (synonymous for nausea as a symptom), and Azithromyacin by mouth.  Well, here we go again, I thought. 


Trying to be hopeful, I thanked God for drugs that would even treat this illness. I was also thankful for doctors that had any idea how to treat this crazy illness.


The pulmonologist I met with also had some ideas about the possibility of surgery.  He said my disease was focal and we may be able to go in and remove the most infected part of my lung.  This gave me some hope.  He said that IV antibiotics would likely not be needed if the surgery was successful. This gave me something positive to think about.


The next morning, I was scheduled for a bronchoscopy, so I was without eat/drink.  I waited, as patiently as possible until 2:00 pm, when someone finally confirmed that I was NOT going to have the procedure done that day.  Oh well, I thought, can you just bring me something to eat now? 


So the bronch was rescheduled for the following morning. They brought me down at 10:30 am to do the procedure.  They are supposed to give you "light sedation," but I promise I remember the whole thing! Ouch!  Perhaps my mind was playing tricks on me?


I began to look forward to going home, until the dreaded reaction to Amakacin came.  I found a rash on my stomach.  I contacted my doctors, and they decided to start me back on Primaxin instead of the Amakacin.  


So my current regimen is: Tygacil by IV, twice a day for 30 min., Primaxin by IV, three times a day for 1 hour, and Azithromyacin by mouth (that one's my favorite. )  ;-)


The next day, my knight in shining armor, and his young sidekick arrived on a white horse (aka Buick Lacrosse) to carry me home to my castle.  And let me just say, there's no place like home. 


The moral of the story is, don't count your chickens before they hatch.  Truly, though, I don't want to come off as being negative or upset, but I have to remind myself that this is complicated and a magic wand is not going to do much good. What will do good, though, is sending up some prayers, having a little faith, and growing closer to God in the process. 


Thank you for lending an ear.