And the results are in...

My culture results finally came back from Texas. I have....drum roll please...

Mycobacterium Abscessus AKA MAC

http://www.cdc.gov/ncidod/dhqp/id_Mabscessus_faq.html

Don't be alarmed when you read that this disease is similar to Leprosy and Tuberculosis. It is NOT either of these conditions. It just has a similar cell structure. I knew that I wasn't contagious, but it's nice to read it here too!

Basically, MAC lives in water, soil and dust. Not sure how I could have avoided those things. It sounds like it also likes to grow on surgical equipment too. Ah...now that made a light bulb go off in my head! I was hospitalized for 9 days with acute belly pain in November of 2007, which resulted in the removal of my gall bladder and appendix. My gall bladder had stopped draining, so we decided to just get rid of the thing all together. The appendix was just a bonus organ removal. The surgeon figured "Why not?", so he did. Funny thing is that the pathology showed that the appendix was diseased and I would have probably needed to have it removed eventually anyway. I asked for a bonus tummy tuck, but the surgeon did not oblige :-(

The great thing about my surgeon, Dr. O, is that he was the one who did spinal surgery on Christopher Reeves a few years before his death. MY surgeon operated on Superman himself! That gave me confidence. I certainly don't blame Dr. O or the hospital, but it seems that I may have contracted MAC from this surgical procedure. It all makes sense to me now. My increased CF symptoms and the drop in my PFT's have all happened in the past couple of years, following the surgery. Truth be told, I will never know for sure how I got this nasty bug, but I'll probably stick with the surgery story.

MAC is typically an infection of the skin. My favorite thing that I read is that "It has rarely been known to cause lung infections in persons with various chronic lung diseases". It's that word "rare" that gets me every time. I am ALWAYS the one who gets the "rare" conditions...UGH! I have a rare genotype of a rare genetic disease, that has progressed in a rare fashion. I also have a rare disease called Undifferentiated Connective Tissue Disease. Now I have a rare lung bug to go with everything else. I just LOVE when my medical team says that they really haven't seen many cases like mine. That means I don't fit into any category that they have experience with and statistics on...Grrrr! I've never had any skin issues, so it looks like MAC decided to take the rare route with me.

I have an appointment next Wednesday to discuss treatment options. If we decide to treat at all it will likely require 2 oral and 1 nebulized antibiotics for about a year. I will have to get my kidneys and liver checked often to ensure that they are handling the drugs well. The abx can also make my white blood cell count drop too low, making me even more immuno-compromised. This makes me nervous about the air travel I have to do for work. I'll chat with my doctor about that issue. Basically, it most likely won't be a walk in the park, but not unbearable either. If I'm given the choice to treat or not, I am going to take the aggressive approach. I don't want to regret sitting on it years from now if it decides to rage out of control. I guess we'll see on Wednesday...