Where to start…..I finished the oral Cipro and prednisone on Friday the 23rd.  Still wasn’t feeling great, although the prednisone helped a ton by opening up my reactive airways making me not so tight chested and wheezy.  Tuesday, the 27th, I started with noticeable lung pain in the upper right lung.  It hurt to cough, good luck not doing that one, and made the vest uncomfortable to use during treatment times but I powered through it because I have to get that junk out.  The lung pain continued yesterday and today.  I called my clinic to ask for a chest x-ray to make sure there wasn’t anything blatantly obvious on it as to a reason for the pain, like a major infiltrate (junk/blood stuck in there), infection, pneumonia, collapsed lung (partial, considering I was still able to breathe decently) or fractured ribs.  I figured it was just do to the raging pseudomonas infection I have going on at the moment.  My doc said yes to the x-ray and since I was still not any better to go ahead and get started on IVs.  I agreed.  Off I went for an x-ray and labs this afternoon.  I accessed my port before going so that they could just draw the blood from my port and not have to be stuck.  Having a port is a lifesaver, Just wanted to throw that out there.  If I didn’t have a port all these IVs I have done over the last 18 months since moving here would have meant hospital stays since I would have had to get a PICC line (central IV line) inserted each time.  No thank you!

My x-ray didn’t show anything to be concerned about and “looks like I have CF.”  Good thing because I was getting worried that they were lying to me all these years.  Just kidding.  My x-ray compared to a healthy person would show more dark gray (scar tissue/”cystic cavities”) and lighter gray areas (mucus).  The black area on a lung x-ray is air and white is bone.  So basically my x-ray looks more “cloudy” than a healthy persons.

My sputum culture showed HEAVY growth of pseudomonas which is up from moderate last culture.  Pseudomonas is something I will always culture.  It’s just a matter of how strong it is and how much havoc it is wreaking.  I like to say describe pseudomonas like it is mono.  Mono is in your body but it’s whether it is active or not.  Pseudomonas will not be eradicated out of my lungs.  There is too much damage and too much nasty mucus in there that it hangs on to it.  I will be starting IV Aztreonam tomorrow.  I have a clinic appointment already scheduled on the 12th so we will see how I am feeling and decide how to proceed at that time.  Either continue another week of IVs, making my total time on IVs to be 21 days which is how long I am normally on them.  If I am not better or showing any or enough improvement we will talk changing antibiotics, inpatient stay and/or bronchoscopy.  Time will tell.

It has been 83 days since I finished IVs in November.  Before that it was only 37 days between finishing and starting.  We have to figure out something to get me more time in between rounds of IVs.  I said that I wanted to make it through the holidays and to my birthday before needing IVs again.  Well, Sunday is my birthday, just 2 days shy.  I told my mom I was starting IVs and her response was, “Well hell. Happy birthday to you….”  I responded with, “yep exactly.  You’re still alive at 35 (with CF), here’s IVs as a friendly reminder.  Best wishes!”  Never a dull moment is life with CF.  As the title of this blog reads, CF Happens, you just have to roll with the punches.  It’s all I know.  With every new “baseline” comes a new way of living, or I should say a new compromise.  Still have energy to do “X” but can’t do “Y” anymore or have to take it slower.  It’s all a learning game with teachable moments at every turn.

Until next time…