Guess Where I Am...

     If you guessed the Ritz, you were close.  If you guessed back at the Brigham, find yourself a bright shiny sticker because you're right!  (I tried to post a pic, but the iPad doesn't allow me.)

     First things first, I am okay and there's no emergency.  I was supposed to go back to my CF doctor tomorrow, but they moved up the appointment one day because I was not doing well and not responding to the meds.  I also had another episode of hemoptysis (bleeding from the lungs) last night, along with lots of pain around my clot areas.

     I showed up to my appointment expecting very little.  At most I thought I would have an ultrasound to see what's causing all this pain, for the doctors to look at me puzzled while telling me that they can't figure out why the meds aren't working, and then to have my line pulled.  Surprisingly, the appointment ended in a hospital admission that I was not prepared for...no clothes, no toothbrush, no makeup, oh my!  But it was nothing that a quick trip to the hospital gift shop and a nearby mall couldn't fix (thank you Rae!)

     The reason for the admission is because they want to do a CAT scan tomorrow to check for a pulmonary embolism (PE).  The contrast dye that is used can damage your kidneys while you're on one of the meds I'm on, so they are giving me meds and lots of IV fluids to flush out and help protect my kidneys.  I don't think that I have a PE, but will feel much better once they are able to rule it out.  As of right now, they are opting not to do an ultrasound because they feel that it's too close to my last one and the changes might be too subtle to pick up on.  

     As far as my lungs go, I couldn't do PFTs today because of the bleeding I had last night, but I don't need a breathing test to tell me that I'm not any better.  In fact, it's been a whopping 5 weeks since I began to feel "sick" and I feel like I'm right back at square one.  This has made for a rough 5 weeks, but I felt a sense of relief when my CF docs seemed so committed to not giving up and continuing to try different things to help me feel better.  My CF team really is above and beyond amazing and I continue to feel incredibly lucky and grateful to have access to such a compassionate group of medical professionals.  

     My IV line did not get pulled because I need it too much.  The new plan is to add a few new antibiotics into the mix (I told them to throw the kitchen sink at me) and to jump up on the prednisone dose (more than 3x the dose I'm on now.) It's hard to say whether the prednisone is helping me or hurting me, but this should help us figure that out.  Hopefully I'll be able to head home tomorrow and continue the IV meds as an outpatient.

     If you haven't figured it out by now, I tend not to blog when things aren't gong so well.  But I promise that I will update again soon after I get the CAT scan results.  Until then, this tired gal is off to bed...goodnight all!