sometimes it's okay to be sad...

sometimes it's okay to be sad...so I let myself be sad. Yesterday I came home from clinic grabbed my cat, laid on my bed, closed the door, turned on the musical talents of sigur ros and just allowed myself to be sad.
I have not updated my blog in a while.
I was on IV for two weeks. I stopped last Friday, with still short of breath symptoms, but we were hoping it was just asthma symptoms, since the infection symptoms seemed to be at bay, we switched puffers, last Tuesday but all Advair seemed to do was make my voice disappear...no improvement on the shortness of breath front.
On Sunday everything felt like an effort. It felt like I was drowning. Everything just seemed to much. Everything seemed like such an effort. It was a horrible horrible feeling. On Tuesday my lung function was down to 0.71 20%, down from where I was before I caught my cold a few weeks ago at 24% and .0.83 liters. With someone as low as lung function as me, those 4 percents mean the world.
How much longer do I keep living in this little in between world? This thought is what I have been mulling around on the back burner the last couple weeks. Is it time for me to get a transplant? I'm having lung envy, and life jealousy. I'm so tired of not being able to breathe, I'm tired of being on this roller coaster ride. ( I hate roller coasters, and it seems i have been on this one for months now)...I'm tired of missing out on things because I can't walk, or carry things, or it's too much energy, too much effort. These are all things that I had been mulling around in my brain....and then my doctor says these words to me yesterday "this is your second, maybe third infection this year already. You've been on IV for almost all of this year, if things don't improve in the next few weeks, I think we should really consider lung transplant. It's not an over night, thing like okay I'll have new lungs now, It takes awhile, there's a waiting game, and when you're in the 0.70's we don't want to miss the boat.".............

so i'm back on IV...just resting and taking it easy, going in to hibernation mode. Lots of 'brothers and sisters' tv series will be watched! Hoping to get back to 0.83...but really, maybe I am suppose to get a lung transplant soon...my doctor is right, I have been on IV for most of this year, and it seems one day I feel good, the next I don't...it's so inconsistent. When I have this low a lung function, and when I know it's going to take awhile, maybe even a year once I'm on the list to get lungs, what is the right choice? Living in this inbetween world is no fun. I want to start living life. I just keep thinking that if a transplant does work, being able to suck in air right to the bottom of my lungs, being able to walk around my home without getting winded, being able to go on trips without thinking about how exhausted or overwhelmed I'll be....being able to take a walk outside without gasping for breath....I want all that. Lately everything is just so much harder. I don't want to miss the boat on a lung transplant...but I don't want to get one too early either. I guess we just wait and see if these drugs work, and if I can actually manage to stay off IV....waiting game again.