replacement body parts

Tuesday morning was one of the scariest moments I have ever had in my whole life. I woke up and could not breathe...I actually thought to myself...oh so this is what it's like to die struggling...It was so extremely scary. I've been sick, well I mean I am sick, and I can't breathe very well, but I've never had what happened to me Tuesday morning, happen to me EVER. My chest enclosed in on me, where it felt as if I could not take a breath anymore. It felt like someone was going to have to stand over me, and start moving my lungs manually for me because it honestly felt like I was not going to be able to do it anymore. They felt like they were going to collapse and that would be it. SCARY.

Even talking to the resident doctor trying to explain to her how I was not able to breathe, I had to stop every second word. I never want that to happen to me again. It is too scary. I called my parents in a panic, and my mom had to say to me, stop talking, it's okay, we're coming. I felt bad to scare them and rush them down, but I was scared too!

Thankfully, they switched my drugs the day before, and with the help of oxygen ALL day on Tuesday, and the new drugs kicking in, I was feeling much better by Tuesday evening, after I saw my physiotherapist, E, and got a lot of the mucus out. I was then able to breathe a little more, able to talk without stopping every few words, able to feel as if I was not drowning. I was able to shake the feeling that someone needed to push together my lungs and do the work for me.

My main stay doctor came in Tuesday evening to calm my fears down, and to reassure me that if that did happen again they have options for me. It's called a bi-pap. It's basically this mask/machine thing that goes over your face and blows air into your lungs, and does the breathing for you...sometimes patients pre tx need this at night to help them breathe, since our lungs are giving out. She said she did not think that would happen to me again, but I think she just wanted to assure me that if it did keep happening, that there were other options. I would not have to suffer, or feel scared like that again, that I could go on the bi-pap machine to help. (I'm scared of the bi-pap though, only cause then things are really gettin' down there...sigh) I hope these new lungs come before I get sicker and need that.

I am feeling a lot a lot better on this new combo of medication though, so there is some good news! I got my white blood cell count back, for the last 3 weeks it has been at 19 or 20 (under 10 is normal) and today it was much lower, still not perfect, but it is going in the right direction for the first time in weeks!

I started strength training with my physiotherapist E yesterday. (She is the coolest chic ever, and has so many visions and ideas she wants to implement for the CF program, but due to lack of funding, etc. they are long term goals...it's people like her, the innovators that the CF world needs!) We're trying to keep my muscles strong while I'm in here, so that the recovery after transplant will be quicker. I nearly keeled over yesterday, it was SUCH hard work.

My doctor just came in and said the transplant meeting went great, all according to the master plan. I'll be listed at status 2, the highest status. I'll meet with the surgeon next week or the week after and sign the papers. It's kind of just a formality for the list, but I won't be "officially" listed till I sign the papers. But if lungs were for some reason come up and no one else met the criteria before I've signed the papers, then I would get them...(not likely) ugh, everything takes so long. I have to work on patience. I will be the most patient person ever after this maybe? maybe not? haha

Good news is, my mama washed my hair today (all my pretty curls are out in full swing, due to the humidity today too!) and I put on a dress, strapped on my O2 and went for a little walk with her (could only due 15 minutes today, since I was taking such deep breaths for most of the walk) The weather is amazing today and my flower 'garden' ledge is looking great.
Man this is all really scary, but I just need to stay as 'healthy' as possible, so I have the best recovery after wards. I'm hoping June for some new lungs. June seems like a good month. A fresh month. A good month to get some replacement body parts.