Dramatic turn in events

I apologize in advance for the lack of posting and the obvious errors that will be in this post. Its only 8:30 but I feel like I’ve been up for days. It all started about a week and a half ago. I got a really bad cold. Yeah, any normal person can say that colds suck. But for CFers, a cold can lead to pretty bad chest infection that is hard to recover from. Thats what happened to me. My chest started to produce more mucus so my mom called to the doctor to get an antibiotic so it wouldn’t get worse. But the damage was done. My lungs were not expanding as much and I could barely walk from point A to point B. On Sunday, I suspected it might be a pneumothorax. My Dad, Sheena and I went to the Nemours Emeregency Room. Logan and I had our first evaluation at Shands scheduled for Monday, December 9th, so by going to the ER there was no way I was making that appointment and who knows when the next one would come. 

So they confirmed I had a moderate pneuomothorax on my right side.Then I started coughing up blood a little later into the night. That’s never fun. At first they thought it was just a side effect of one of the painkillers, but an x-ray showed a lot of white fuzzies which suggetsted internal bleeding. So not only do I have a collapsed lung, I am bleeding into my other one. The least invasive procedure for the pneumo is oxygen and time. However the doctors were really concerned with the bleeding. My heart was beating about 145 bpm and my respiratory rate was 45. My oxygen was still mid to low 90s. The solution: A BIPAP. Its basically this machine that helps breathe for you. So good for my body. Not so good for my disease progression. Talks in hushed voices ensued between my parents and doctors.

Basically: My disease has declined rapidly in the past few weeks. I need the BiPAP machine so that my body doesn’t wear out. If the BiPAP doesn’t work for some reason, I may have to be intubated. This means that a tube is put down my throat, I am put asleep, and a machine breathes for me. The chances of a CFer waking up are slim to none. 

My family was facing hopelessness. The doctors and social worker came in and spoke to me about my options. I wanted to try all available options before being intubated. That seems so final. But I was afraid. Hell, I still am. What about transplant? Would this make me ineligible? I am not afraid of death; I just don’t think its my time yet.

My doctor was able to get in touch with Florida Hospital. They agreed to transport me tonight and determine eligibilty. So hopefully within the coming days we will know. This whole process moved up much faster and a lot scarier. 

I would like you all to pray for me and my family. I would really appreciate it. 

Sorry if this was confusing. Comment with any questions.