Guess I'm Not One of "Those" People

When Dr. Dazzle and I first began our discussions about eradicating the mycobacterium abscessus, he told me of these people who have been diagnosed with this nasty bacteria...who received treatment...and who never cultured it again. They were able to basically render the abscessus dormant. I knew that this particular bug is difficult to treat. I knew that this bug can cause irreparable lung damage. I knew that the treatment itself was very risky. I decided to take the risk, because I KNEW that I was going to be one of "those" people that Dr. Dazzle told me about in our discussions. One of "those" people who would have nothing but positive results.

Today I found out that I am, in fact, not one of "those" people. The mycobacterium is back. I was able to suppress it the entire 4 months of my initial IV therapy. I finished my IV's in December. It waited less than 2 months to return. It looks like this is going to be one of those things I am just going to wrestle with for the rest of my life. Dr. Dazzle and I had a chat about it. He said that while we were hoping that it would not return, we knew it would be a possibility. For now, we are not going to change my treatment plan. We are now going to focus on treating based on symptoms. My PFT's are very stable, I'm not having fevers and I'm not having an increased cough. For now, we will just go with the flow.
After the phone call with Dr. Dazzle I joined my family in the kitchen to help my husband with dinner. I told him the treatment plan, saying that I will now be on Azithromycin and nebulized Amikacin for life. My daughter overheard this conversation and said, "You mean you'll even be on these medications when you're 96 years old?". *SILENCE* When I finally caught my breath sufficiently to respond I said, "Oh sweet pea, yes, hopefully I'll still be doing these medications when I'm 96 years old". Moments like these are the worst part of this damn disease...

So I'm not going to lie...I'm bummed. I feel like I put a lot of blood, sweat and tears into this treatment plan for the past 6 months, and we're right back where we started. Dr. Dazzle assures me that just because it's present, doesn't mean we didn't suppress it. This must be what it feels like to relapse from cancer. I not a big fan of this type of disappointment.

All that being said, I feel pretty good physically. That's a HUGE plus! I also have a lot to distract me from thinking too much about this crappy news. I think I'll go get myself a mani/pedi sometime this week...then all will be right with the world :-)