I had a clinic appointment today. I went in wondering if I was going to be able to maintain my record of having a clean culture for both the m. abscesses and MAC. When I checked my cultures from my previous clinic visit in August they were negative for both bugs(for the first time). I figured I was home free. I figured wrong. Ever since I started culturing this tuberculosis-wannabe disease, my cultures have shown evidence of it within days. I guess it took the full 8 weeks for the MAC to grow this time around. This is a positive sign. It means that my disease burden is smaller. However, it is still there...
Why does this bum me out a bit? It's true that all CFer's culture bugs constantly. I already knew that I will never completely get rid of the mycobacterium. The goal is to suppress it until it's no longer visible in a culture. That means that it is being well controlled. I guess I'm frustrated, because I thought I saw the light at the end of the tunnel. I was hoping that the end of an era was within my sights. I was told that I could start weening off of some of the drugs I'm taking after one year of clean cultures from mycobacterium. I was under the impression that the year was going to start in August. I was wrong. The year has not yet begun.
The good news is that I feel really good and my PFT's are still holding steady. I really feel like this is a good treatment plan. The other good news is that a clinical trial will be starting at my center in a few months using inhaled Arikace to treated resistant MAC. Right now the FDA put a hold on this trial, but I'm really hoping it's not for long. Dr. Dazzle said that I am at the very top of the list to be contacted when that study opens up!
Lesson learned...don't assume your culture is clean before the final reading! I'm going to try the patience thing next time.
6 comments:
Good luck! I haven't cultured mycobacterium, but I have definitely had bugs that I thought/hoped were gone forever which eventually resurfaced. In fact, I just got put back on my regimen for treating ABPA, which I had really hoped would be gone for at least several years! I'm so glad that your PFTs are holding steady, and hope that you can get that clean culture soon!
Argh. Argh. Argh. F'ing MAC. I'm building a lung laser you can use to kill the damn stuff.
I guess the good news is that you're feeling great regardless of the MAC. That's not always possible with CF in general. And your PFTs are good. Another bonus. So some good news there. And a new drug coming if the FDA would get its act together. More good news down the road? And you still have a dr. named Dr. Dazzle. How nice is that if you're a woman?
Good to see a post from you. What a nice surprise. I feel like I won the blog lottery today.
Hey girly,
Bummed to hear that that the stupid head MAC is being stubbornly stupid! I like Unknown's idea of building a lung laser!
I hope this new trial drug will work like magic for you (c:
Sending love ♥!
Hey girly,
Bummed to hear that that the stupid head MAC is being stubbornly stupid! I like Unknown's idea of building a lung laser!
I hope this new trial drug will work like magic for you (c:
Sending love ♥!
That sucks! I feel for you.
I have mac too and just wrote a blog about mine today. Sounds like yours is under control - so that's awesome!
Here's my post if you're interested - it's long though so beware:
http://kellystransplant.wordpress.com/
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