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.
Saturday, December 31, 2011
Thursday, June 30, 2011
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.
Tuesday, June 21, 2011
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.
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.
Sunday, May 29, 2011
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.
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.
Thursday, March 17, 2011
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!!!
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