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. 

What in the world is NTM?

At the age of 29, I discovered something new about myself.  Something I wasn't really excited about.  I had NTM. 


Let me back up, and tell you a little about myself.  I was born in Fort Worth, Texas, raised in Austin. I've lived in Vegas, and now I reside in South Carolina.  I'm a second grade teacher and I adore my job.  Most importantly though, I love my family.  I have a spectacular husband and a vibrant four-year-old son. 


Throughout my adult life, I was frequently ill, with what I believed were just normal respiratory infections.  I would go to the doctor, get some antibiotics, rest for a day or two, and then get right back into life. Eventually though, these constant visits to the doctor began to wear on me.  I had a young child, a job, family...and I couldn't keep up this charade. I went to an allergist (for the fourth time in my life), and he sent me to a pulmonologist.


This doctor discovered that I had bronchiectasis and possibly NTM.  He ran some other tests, ruled out a bunch of stuff, and began to plan my treatment.  The NTM was confirmed with a CT scan and sputum cultures. I was to do IV antibiotics for 8 to 10 months.  I'm thinking, well this is awful, but by the grace of God, I can surpass this. So I began treatment.


I've always been able to give myself IV treatments at home, which is a blessing.  I can dose while watching TV, playing with my son, reading a book, doing the dishes...It's pretty amazing.  Is it what I would choose for myself, no, but I try really hard to find the glass half full.  (Most days.)


After 8 months of treatment (and a gamut of different drugs tried), and more CT scans, we discovered that the NTM was not cooperating.  My doctor had been certain that he could cure my illness, but it wasn't happening. So, he sent me to another Pulmonologist at the University of Florida. That doctor shared with me that what I have is chronic.  I learned more about my lung infection.  It's called Non-tuberculosis Mycobacterium Abcessus.  A mouthful, right?  And it's not going away.  It's a lung infection that I acquired from who knows where...the doctor said this particular bacteria grows in water and soil, and one day, I just inhaled it.  Sounds simple, huh? Apparently one breath, is creating a lifetime of complicated stuff for me.


I  began to come to grips with my illness.  People live with chronic illnesses all the time, right?


The doctors began me on shorter periods of IV antibiotics (12 weeks), followed by CT, and hopefully an "antibiotic holiday." My last round of antibiotics was every four hours for an hour at a time.  Mind you, I'm still working, being a mom, a wife, a daughter, a friend.  I wish I could devote more time to this disease, but I'm just not willing. 


I finally completed the last round of grueling antibiotics, was "free at last," but here I am two weeks later, sick again.  I'm not talking about 'cough cough,' I don't feel good.  I'm talking about, pain in my chest, body, lack of breath, can't do anything... 


I'm on a war path now.  Currently, there is no cure, but that doesn't mean we can't find the right balance of drugs that can keep me "me."   I decided to take control of my situation and go to a medical university.  Tomorrow I will arrive at MUSC for an overnight hospital stay.  The mission...to get it "under control."


Thanks for listening to my story.  I know there are others out there with this illness, or similar illnesses, that may be able to relate to me and what I'm going through.  


This too shall pass.  I'm sure of it.


To be continued...