Still fighting
Last week I went to the Doctors, and I got some good news and some bad news.
When I was 17 the doctors discovered that I had a bacteria called MAC. This is an unusual for CF lungs, and a little dangerous because it slowly destroys your lungs in a way no other bacteria does. It is a very slow growing bacteria and sometimes very hard to find, it is related to tuberculoses, but is not contagious to regular people, but can be to others with CF. This bacteria requires intense treatments. When I had it back then I had to do 12 months of IV antibiotics multiple times a day. That was not a very fun 12 months of my life to say the least. After the 12 months it seems as though the antibiotics fought and killed the bacteria.
When I was in the hospital in december they found it again. And they said it probably never went away but has just been in remission. Before they could start treatments they had to have three positive cultures of the bacteria. Since it is so slow growing, it can take a while for those to be found. When I went into the doctor tuesday, the first thing he said was they found the third positive culture and it was finally time to start treating it. That was the bad news. I felt like big pile of bricks had fallen on me. Although I was expecting it, I was hoping there was nothing there and that I wouldnt have this bacteria that is slowly killing my lungs. But I do. And that is the reason why I have not been feeling good. That is the reason why my lung function is the lowest it has ever been despite all my treatments and exercise.
The good news is, the treatment is all done orally now. So I do not have to do IV’s for 12-18 months! That was a huge relief to me. And now I feel like maybe I actually can fight this, or at least try. The treatments are still intense, with 4 antibiotics daily, with some not so fun side affects. I dont even know the extent of them all yet, but one of them not only affects my hearing more(I already have horrible hearing, all of my friends can bare witness to that haha) but now it will also affect my vision…oh joy.
So that is my life right now. It has been a very hard emotional week for me. I dont really know why it has been so hard, I think I am just so tired. So tired of fighting so hard and not seeing any results. My body is getting weaker and weaker, my lungs are filing up more and more, and there are moments when I struggle so hard for just one tiny breath. The reality of my future is weighing heavy on my mind, and sometimes it is impossible to carry. But I am still fighting, and will keep fighting this horrible disease for as long as I can.
