Bittersweet Appointment

Today I finished my IV's. I had a clinic appointment and got my PICC pulled! Sweet relief! Today was 3 1/2 months in the making...the end of phase one of my treatment of Mycobacterium Abscessus (I am a HORRIBLE speller...and realize that I have spelled this wrong almost every time I've written it over the past several months...oops). The plan going forward is to continue nebulized Amikacin every other month for at least a year. I will continue the oral Zyvox for one year and I will continue the oral Azithromycin for life. I can certainly handle this plan!

I anticipated that I would be jubilant after today's clinic visit. I imagined that I would have stable PFT's, the m. abscessus would be gone and I would return home to my normal life. I knew it wasn't going to go as I imagined when the first PFT I blew was down 6% from last month. After three tries I was able to improve, so I actually only had a 3% decline overall. Not horrible, but I expected further improvement after all of the blood, sweat and tears I put into this treatment plan. Yet, it was not to be today.

Then I headed into my appointment with Dr. Dazzle. One of the first things I asked was about my last cultures. I really wanted to know if the H Flu was still present in my culture from last month. The look on his face when I asked told me immediately that all was not well with my cultures. I have not cultured m. abscessus since September, about a month after I started my treatment. This is great news! So what's new? I now can add Mycobacterium Avium Complex...also known as MAC...to the list of bugs living in my lungs. There must have been a buy one get one free deal going on when I contracted my mycobacterium. MAC is common in immunocompromised people, especially AIDS patients. It also tends to like living in the lungs of people with CF. This avium strain derives from birds. I don't even like birds!!! I guess it can also be found in dirt, dust and water. It is not as destructive as the Mycobacterium Abscessus can be, so it is often not treated until it progresses. This MAC was discovered after the full eight week examination of my late September culture. Dr. Dazzle thinks that the drugs I have been on over these last few months should have suppressed the MAC.

Yet, I'm bummed. My last 2 appointments have resulted in culturing 2 new bugs. This MAC is another one that will never go away completely. It can only be controlled. I did everything right. I have worked so hard all fall to get my lungs in tip top shape. In spite of my efforts, I still lost some lung function and picked up two new bugs. Today I learned that CF has a mind of its own. There are aspects of it that I can NOT control, despite my best efforts. Piss off CF!

Dr. Dazzle and I chatted a bit about my Brochiectasis. Mine is pretty much all in my upper lobes. My upper left lobe is the worst. That damn upper left lobe has been a thorn in my side for a while. I also met with one of the research nurses. They want me to participate in a quick one day study to test out a new way of doing Nasal PD's. It will involve getting another PFT, a sweat test, a nasal PD and nasal scrapes. So I'm heading out to the hospital again tomorrow for another all day round of procedures, this time for the sake of research. I'm bummed that I don't qualify for the Vertex study :-( Yet, they have a phase 3 Spireva study that I will start in January. I was involved in the phase 2 version of the same study.

Basically, I'm a bit frustrated that it always seems that there has to be some bad news to even out the good. I am going to work on focusing on the fact that I feel good and I am PICC free!!! I am heading out to a celebratory dinner with my family! I did 3 1/2 months of IV's without completely losing my mind... For this I think I deserve some sushi!

If you heard REALLY loud music and lousy singing coming from a car today, it was probably from me. This song makes me feel GOOD and represents how I feel about the end of this era!