2011 ends on a great note!!!

Been a while, folks, but I have great news to report!!!  I've been off antibiotics since August and I've been feeling great.  Two small bouts with what I think was just bronchitis, but that's all! I saw my doctors in Charleston this week and they were very happy with my current state. My CT scan looked as clear as it was when I was on full-time SERIOUS antibiotics. I'm antibiotic-free now, AND the doctors don't want to see me for SIX months. Cannot contain my excitement. 


As many of you may already know, I was finally able to start a master's program in November. It's something I've wanted to do for ten years, but for one reason or another, I've not been able to get started.  After prayer and much consideration, it finally felt right.  In about 15 months I'll have a master's degree in Classroom Leadership. So happy that my health won't be holding me back from this goal any longer. 


God has held my hand through this journey, and I have so much to be thankful for. Thank you to all of you that have kept me in your prayers.  Many thanks to my wonderful family, as well, that have seen me through this and supported me all the way.


Here's to a spectacular, and promising 2012.  Love and laughter to all.

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.

No more Pity Party...

"Use your life to serve the world..." -Oprah Winfrey


After a severe Pity Party this evening, I decided to watch the final episode of Oprah.  She spoke of using "where you are" as a platform for helping others.  This struck a serious cord with me.  I've been down about summer coming up, and still on IV antibiotics.  I want to get in the pool with my son, enjoy carefree time in the sun, and just "be free" this summer, but NTM isn't allowing me to do so.  My "situation" feels like ropes tying me down and keeping me from doing what I want to do.


I realized today that for most of Gage's life, he's known Mommy to be"sick." That's frustrating to me.  But then I think to myself, you know it could be much worse.  This is not a life-threatening disease.  Though it's quite annoying and gets in the way A LOT, I'm still here and I'm still able to live my life.  THAT is a blessing. I'm still able to be a mom, a wife, a teacher, a daughter, a sister, a friend.  And for that, I will be thankful.


I want God to use my circumstances somehow to help others.  No one knows how or when He will do so, but I believe He will use this situation in some awesome way.  


I have about 2 more weeks to wait for results on my last bronchoscope.  We're hopeful that mycobacterium only shows up in samples from my right middle lobe.  If that's the case, that part of my lung will be removed this summer and a huge part of this journey will, hopefully, come to a very happy ending.  If it's in other parts of my lungs, we'll have to go back to the drawing board. 


You may have some situation in your life that is also "tying" you down.  If that's the case, let's be in this together, trusting God that it's not for "nothing," but for SOMETHING. 


Thank you to all of those that continue to support me on this journey. 

Wait...

Home from another trip to MUSC.  I'm becoming quite familiar with the pavement from here to Charleston, SC.  Just wish it was for vacation instead of seeing doctors! :-)

It was a good day... After talking with my doctors, we've decided to postpone my April- scheduled surgery.  The doctors have some questions about my NTM that we want to try to sort out before jumping right into removing part of my lung.  I'm so grateful to have doctors that are willing to search high and low for answers in such a complicated situation.

I've been on Amakacin, Tygacil (both IV), and Azithromyacin since December.  The doctors are pleased (and so am I!) that I've tolerated the Amakacin, which I've had a reaction to in the past.  My last CT scan looked good, which leaves us all wondering, could the Amakacin kick this? I've been on SO many different drugs for NTM, but this is the grandaddy of them all.  

My docs want to do a bronchoscopy and take specific samples from the most troublesome parts of my lungs to see if the abcessus (NTM) is being affected.  They want to give me a little more time on these drugs before they do so.  

At first I was disappointed, because this means longer time on IV and no "real" answer.  But, after giving it some thought, I'm reminded of the fact that when we ask God for something, sometimes the answer is yes, sometimes no, sometimes WAIT.   I'm going to wait patiently for now!!!  

Will 2011 hold answers?

New Year's Eve 2010

I'm just going to be honest...it's been a tough year.  When this all started, I never imagined that I would still be dealing with this 2 years later.  On a positive note though, since adding my new doctors to the mix, there are new ideas for treatment of my NTM.  I am a person that refuses to just sit back and say, "Well, I guess I'm doomed to deal with this the rest of my life." Because I'm not. God has a better plan, and I'm going to trust that plan.

I started back on a drug called Amakacin today.  I'm actually allergic to it, (causes a beautiful rash), but it's one of the best drugs for treatment of NTM abcessus.  So, we're trying it again. I'm taking fewer doses weekly than I was before, and the doctor has prescribed me some preventative allergic medicine.  (OTC zantac and claritin.)  Now we just pray.  Pray that the rash doesn't come and that this drug does some good.

Another hopeful avenue that we'll be exploring in 2011 is surgery.  My new doctors feel that the infection is very "focal," meaning most of it is clumped in one specific part of my lungs.  I don't have complete understanding of how the surgery will work, but I think they may be able to go in and "remove" the worst part of the infection.  I will be seeing a thoracic surgeon in February regarding the surgery. I'm excited (and super nervous) to talk with him and find out more about this possibility. 

I'm learning so much as I continue on this path.  I believe the most important thing that I'm learning is to trust.  Trust God that he knows what's best for me.  I'm learning that life isn't peaches and cream for everyone all the time, and that these trials come for a reason.  Getting angry about what has come into my life will NOT make it easier.  On the flip side, if I can learn to trust that God knows exactly what He's doing, this whole situation makes more sense.  

Wishing each of you a beautiful 2011.  Here's to answers to questions YOU may have about YOUR life. 

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.