By golly, I've got them stumped.

Home from another trip to Char-Austin (Gage's nickname for Charleston.)  News was not what I wanted to hear, but it's a reminder that I need to keep leaning on God, my family, and friends.  

The Pet CT showed two new growths in the opposite lung this time.  The right middle lobe seemed clear (which is the one that they were thinking of removing.) The doctors (thank goodness for their honesty) aren't sure what to do next.  We don't know what the new growths are.  They could be Abcesseus (my original diagnosis), or they could be another strand of the disease, or something entirely different.  

My doctors are going to present my case to doctors at NIH (in Washington D.C.) and National Jewish (in Colorado). Both are leading hospitals for pulmonary disease.  My first doctor (Greenville) recommended that I go to Natl. Jewish about a year ago, but being the stubborn gal I am, I didn't take his advice.  I thought certainly the great docs at MUSC could handle this one!!!  

After getting opinions/advice from NIH and Natl. Jewish, we will discuss next steps.  Surgery is still an option, but would probably be more complicated at this point.  We also discussed some other drug options.  My sweet husband brought up the fact that I'd like to get off of IV drugs (amen), and they seemed hopeful that we might be able to find some oral/inhaled drugs for long-term care if needed.  The doctors think this may be a case of maintaining now, rather than eradicating.

However, I believe in the power of our Great Physician.  God has a plan for me.  I know I say this over and over, and that's because I believe it.  Tragedy, hardships, and difficult times happen to everyone.  Though we don't like it, we do learn from it.  

Thanks for listening. 

Hopeful

Doctor called today (Finally!)  Waiting to hear from him is like waiting to see if you won the lottery!  Anyhow...Just an update for all of you sweet followers of mine.  


My last bronchoscopy showed NO growth after 4 weeks in the areas where samples were taken.  This leaves the doctors a bit...perplexed.  They were hopeful to see growth in one specific area--the right middle lobe, which can be removed by lobectomy. The fact that it didn't grow at all is confusing.  (I say it's the hand of God.) They want to double check these results by doing a PET CT scan.  This should, hopefully, give more information about what's going on in my lungs at this point.


I will go next Tuesday for the PET CT and to visit with the surgeon.  We are still unsure of surgery (especially now), so my doctors and the surgeon will review the results of the CT and make further decisions about what to do next.  (Feeling a bit like a lab rat these days.) ;-)


In the mean time, I have stopped IV Amakacin due to an audiology screening that showed moderately severe to severe hearing loss.  (One lovely side effect of the drug that may actually be killing this bacteria.)  The hearing loss is irreversible.  I've also had ringing in both ears, but they say this will hopefully go away.  None of you are allowed to make fun of me when I get my hearing aids!  


I'm still on IV Tygacil and my oral antibiotic.  They make an inhaled version of the Amakacin, which is apparently near impossible to find, but the doctors are hopeful to find it for me so I can begin those treatments.  The inhaled Amakacin does not have the possible side effect of hearing loss.  They're running out of meds to give me, so this is really a last straw.


I will know more next week after the CT scan, but for now, I'm going to ask anyone reading this to please send a prayer up for me.  This journey has been long, and I know God has a plan.  It is by His grace that I have come through this thus far and it can be hard to wait for answers, but HOPEFUL is my word of the day.