I am lucky.
I don't know if anyone will ever understand how lucky I am. I don't know if I really comprehend how lucky I am. I am alive. I am 21 years old. When I was born my parents were told I wouldn't live past 16. I just watched a video about a girl who died three days before her 16th birthday. She was born the same year as my younger brother.
Why am I still alive when so many little kids are still dying from this awful disease? I have the severe case - I'm a double deltaF508 too, and I'm still alive.
I'm sick. Right now, as I sit here crying, I can feel mucus rattling in my lungs. That scares me. I just got out of the hospital. I'm doing everything I can, and I have no idea how soon I'll have to go back. They didn't give me vancomycin this time so we could avoid putting more strain on my kidneys, and maybe I should have been on the vanco - maybe it was the MRSA that made me sick. They never showed me the results of my cultures, so I don't know. And seeing as they handed me my own IV one day and I had to hang it myself I'm not sure how much I even trust that hospital.
This video about the girl who died before her 16th birthday really hit me.
They said something in one of these about hoping for a cure. And as much as I am hopeful that someday there will be a cure, deep down, I feel there is no cure. There is research for better treatments so maybe I will get another 10 years before I need to go on the transplant list, but I don't feel there is a cure.
How do they cure this? How do they cure everything I've gone through and everything my family and friends have been through because of this disease? How do they cure the damage that has already been done to my lungs? I can never have a pair of healthy lungs unless I have a transplant. And even then, I'm immuno-suppressed for the rest of my life... I don't win either way. My lungs are already hurt.
How do they cure the diabetes the CF has caused? How do they cure the damage to my pancreas so I won't have to take so many pills to digest my food. Will a "cure" solve the absorption problems? Will I be able to stop taking the vitamins? Because I'm pretty sure it's the enzymes that my pancreas is supposed to produce that help those be absorbed.
They have some really promising drugs in the pipeline, and I'm hoping to be in the study for the most promising one... But it's not a cure.
Every cell in my body has the wrong DNA. I have a missing amino acid on chromosome 7. How do they fix that?
I'm never going to be like everyone else.
It really makes me think about lung transplant... and when I'm going to get sicker. Sometimes I just don't know if I'm strong enough to do it. I don't know how I'm going to adjust every time I get a little bit sicker. I like the way things are now. I could do without the hospital stays and the meds and the endless treatments, but it's not so bad. What am I going to do when I have to be on oxygen? When I have to give up dancing? When I have to give up living?
But I think about those little kids again and I'm so lucky. I'm still here, and I guess all I can do is fight for them, for the ones who didn't make it. I can fight for my friends with CF and all the other people fighting. I can fight for my family and friends. I can fight for me. And that's all I can do. That, and hope my luck doesn't run out.
This is another one about that girl...
And this one has the song by Celine Dion... if you know me REALLY well, you'll get the song. Maybe you'll get it even if you don't know me that well.
And I have a bunch of CF videos as my youtube favorites. Ignore the sesame street... I enjoy watching it while I'm in the hospital.