Release

In a way I've used my blog as a means to release emotion. And this seems like a good time to Release. I'm so excited for the New Year, I'm hoping 2011 will bring healthier moments. I'm starting off rocky on the health side because New Years eve I got hit with a nasty cold/flu and have been running 102.5 fever and coughing my brains out. I'm used to coughing on a typical day but at this point I'm so uncomfortable with snot and 10 times the amount of mucus due to the cold plus the combination of a sore throat that this situation isn't fun in the least. I'm surrounded by Nyquil, advil pm, cold-eeze, halls defense vitamin C, simply saline nose spray, zithromax and boxes of tissues and I'm hoping that one of these things will start having some beneficial affect. I hate when I get a cold because I spend most of my time praying that the sinus cold doesn't go and spread infection to my lungs. At that point it's game over and I.V. time. I'm going to the doctors tomorrow to see if a good oral antibiotic can kill whatever is starting to brew in my lungs.

Never in my life have I ever said "why me" when it comes to having Cystic Fibrosis. But lately I've been asking more questions trying to get down to the bottom of what the inside of my lungs look like. I feel as though if I had a chance to turn my body inside out for a day and really examine my lungs, I could have more of a game plan on what I'm truly up against. For the past 5 years I've had these crackles in my right upper lobes and I've just assumed that it was because I had a lot of mucus in my airways due to the disease. The crackling sounds in my lungs have become louder when I breathe and I started to wonder why I sounded like a bowl of rice crispies drenched in milk. I recently had a CT scan of my lungs and they found a lot of Bronchiectasis(damaged lung). A doctor had explained to me that the damaged lobe is floppy and its so damaged and narrow of a passageway that it makes that crackling sound. Basically it has no use, no airway function.

Bronchiectasis:

It's basically a breeding ground for infection. But I can't remove the damaged parts of my lungs because a CFer is told that we have to preserve as much of the lung as possible. And we can only go through the process of lung removal/transplant when it's basically a life or death situation and you need to have a lung transplant in order to live. Then comes a lot of anti-rejection medication and a whole other journey that I have yet to take and I'm pushing that door closed shut with all my might. My doctor believes that the removal of my right upper lobe wouldn't benefit me at this time and overall could cause more infection or more damage in the long run with the recovery being intense. So I just have to deal with the crackles for now and hope that I can maintain my lungs as long as possible.

A new chapter to 2011 is that I have stopped the PTC124/Alturen clinical trial that I was in. I had given one year of my life hoping that this drug would benefit me and really get into my system and help relieve some of my CF symptoms but it had done nothing. Then I signed up to do the extension of the clinical trial and after three months of being on "the real drug" my PFT's had dropped. I said sayonara and knew that it was time to take matters into my own hands. My old regimen consisted of pulmazyme, hypertonic saline 3%, and colistin(month on month off) and now my new daily regimen is pulmazyme, hypertonic saline solution 7%, and Cayston(month on month off). Hoping that switching up my health regimen and getting on some new medications could only help my lung function for the future. I'm hoping for a better year healthwise and hoping to breathe easier in 2011.

"Never let go of hope. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what has passed and you will ask yourself...'How did I get through all of that?"