My brain is set to fry and it has nothing to do with the fever I do not have but feel like I do.

Holy shit information just flows out as fast as I try to store it. Greg and I came up with a pretty good meal plan for the next few days while we were driving home from the store. I get home to look for a tasty recipe I bookmarked (thanks Amalah!), and totally got sidetracked printing all the recipes Greg needed to update his cookbook for school. Now other than the side dish I just printed, I got nothing. Shit shit shit shit for brains.

So now I have to sit here and figure out what I was thinking of cooking, so I can make a shopping list, so I can go BACK to the friggin' store. See.... s h i t for brains.

Luckily I had plans to go to a different store to check out their meats, so that was kinda planned anyway. We would have made all the stops at once but the puppy might have eaten the groceries we already had, she has no car manners yet. And the 8lb wonder weenie likes to sit on the dash and just watch her get into trouble so she has more to sneer about. ;-)

We traveled to San Fran for the big appointment this last week and I’m not sure where to even begin to explain.

I didn’t sleep for days. I planned answers, prepared for questions, and readied backup plans. This might be one of those times when planning for the worst isn’t in my best interest. I laid awake I can’t begin to tell you how many night in the last 6 weeks mentally getting ready for this 3-4 hour appointment.

That was the fastest 40 minutes of my life. 20 minutes if that time was listening to the doctor dictate a letter to my other doctors. I’m a lovely patient perfectly suited to their program. Which means, yes, I’m in. No, I am not “listed” at this time. Which means I won’t be looking to cause any traffic accidents in the greater northern California area yet. Now we enter the evaluation/exclusion phase. I have about 40 tests to be run through. I will be poked, prodded, stuck and charted. All of that will give them a “number”. That number is my sick/healthy rating and gives me my place on the list. We might find that I’m just not sick enough yet, and we don’t find that likely.

So where does that leave this whole thing? I don’t know. I still don’t know how I feel about it. I really feel a lot like I’m just trading one problem for another. Is a possible 5 years really worth all this shit? Because look, the numbers aren’t great, 85% of patients are still alive after one year; only 51% are alive after 5 years. Yes those are averages, and averages include everyone with every disease to receive lungs, but it is what it is and those are the numbers. I am young, and as far as we know, totally healthy outside of having lungs that are steaming piles of shit. Everyone thinks I’ll go much farther than 5 years, but the reality is, 5 years may be it. Could I survive 5 years without the surgery? When is the timing right? Now, tomorrow, next week, next year?

It’s a ton to absorb. My other doctors are just happy that I’m plugged in. My PF test was up a little more, which means I’m up to 28% of normal. My lung volume should be 3.06, mine is .86. There is no doubt my numbers are beyond bad. Another spell like last January could easily mean life on a ventilator until lungs come up.

I did like the doctor I saw. He could have cared less about my time out of the “loop”, he didn’t care about my medications and felt they were all fine and working so why muck with it. All the time worrying was for nothing, which it totally to be expected. Part of me knew that, but you can’t help but be prepared, I’ve had it go the other way too. For every laid back easy doctor there are 5 hardnosed, by the book, black or white, diehards with no wiggle room. I’ve seen and been in front of the firing squad. This was not that.

So now we go from here. Where we go from here is a path I’m not sure of. But at least we’re moving forward.

Hauled hay today.
Fell through the fucking floor with a loaded truck and trailer. happy. NOT.
Had to have the tractor pull us out and board over the whole before the trailer could be pulled clear. Left rear tire all the way through the floor to the axle. Missed taking out the fender by a hair. Did not tweek the trailer or tongue, though I have no idea how at that angle. Hubby was seriously pissed. And not at falling through the floor, I mean that was expected. We're just shocked we made it this long. It was the manner in which they wished to yard out our truck, you know, the rig they DON'T OWN.

Still had to make a second load. Fucking Amazing.

You know your day is going to shit when:

You are awakened at 7 am by the sounds of what appears to be your son puking in the bathroom. No, no, not puking (thank god, I'll shoot myself if that shit starts again)....that snarfling and gagging sound is him trying to blow his nose complete with an accompaniment of moaning and groaning.

You have a nagging feeling you are supposed to BE somewhere. You assume it's the bank to deposit the check you've been waiting on for 2 weeks!

Your phone rings and as soon as you see the name on the caller ID you remember where you where supposed to BE. *FUCK* Gah! I never do that. I'm blaming PROVO for getting us off schedule! Though I did remember to email last night to make sure it was today.... but forgot to go back and check for the answer. *Double GAH!*

This day has got to get better. From the sounds coming from the living room, maybe not so much. For me, with my el crapo lungs, having a sick child is a killer. I want to comfort him and do all the *stuffs* we do for a sick one. (Though he isn't little and cuddly anymore.) On the other hand I want to send him to the garage with a space heater and a warm blanket, setting his meals on the back steps for him while wearing gloves and a mask. *Ha*
I just can't risk catching his crud. Yet I can't just leave him to fend for himself, he's a baby still. *HA* Ok, MY baby still.

So we're off to screw up some more of this day. Looks like medication is in order. Ohhh and call the pharmacy. Good god I need a secretary.

A word of Caution

Just word of caution for all my dear friends in case you are ever in the position to wear oxygen and are still upright and capable of moving. Or a word to the wise for all my smoking friends... *ahem*

1) The 20ft hose will get caught on everything. It hurts like hell when yanked. Think reins on a horse, only through your nose.
2) It is highly annoying when some steps on it, because DUDE, it's attached to my NOSE for gods sake.
3) Equally annoying when you step on it yourself, only without the satisfaction of anyone to yell at for stepping on it.
4) Kittens will think it's a great toy.
5) They will flop their fat bodies on it and expect you to drag them through the house. *I'm looking at you, Evil.*
6) Husbands will forget about it after a while and hook their foot in it, ripping it totally off your face, and barley blink, while you are holding your nose making sure it's still attached. As soon as you can catch your breath from the pain, you can commence yelling, but the spry bastard has escaped the house.
7) You will wake up at least once a night wrapped up like a friggin' mummy in 20 ft of hosing.
8) You will learn not to roll completely over, you will learn to roll from side to side to keep 7 from happening.

I'm sure I could think of more, but these will get you off to a good start in case you are ever in this position. Which for the love of god don't be.
I'm not sure I'll be able to sleep if I ever get to retire George. I'm kinda used to him humming in the room and the hiss of the O2 in my head all night.

2 new lungs, please

Well, ok, since I'm frighteningly good at saying something significant, and then, ohhh, you know, totally dropping the ball, like I did over at LJ, I thought I should pick up the pieces here and fill in the blanks.

I have my appointment for a transplant consultation. It's Nov. the 19th, in case you are the praying or sending good karma type. This is where they decide if they'll accept me into their program at UCSF. This can go several ways:

A) You're a total fuck up and regardless of your lung function we don't feel your a candidate for transplant. The fact that I spent 10 years out of the "loop" could stick me here.
B) You lung function is low enough to qualify you, but your general health and mobility makes us choose to wait. Come check in every 3 months and we'll list you at a later date. You know, possible right before you die. Oh, and fuck you for being active and stubborn.
C) Holy shit batman how are you creeping along in life? We need to list you right away. Which, Dr Blue Eyes says, based solely on numbers is where he'd put me. It's that meet me, seeing me in person factor that screws me every time. See last line of B.

If A happens, well I don't know where to go after that, but I'm sure Dr. Blue Eyes will have a suggestion. Rest assured I will cry, bitch, and probably scream and I would recommend avoiding me like the fucking plague for awhile.
If it's choice B, well I won't be ecstatic but at least we're on the radar and if something takes a turn for the worse they can list me quickly.
If it's C then the next couple months will be a blur. In two to 3 weeks they will call me and I'll have to do a bunch of lab work and testing. These are exclusion tests. If I fail, I'm excluded. They will be checking for other diseases that would make transplant pointless. After that it's waiting time. I can't think of anything that will exclude me, unless I'm harboring cancer or some damn thing, in which case, shoot me now.

So how do I feel about all this, you ask. Lets see.....

Mixed.

On one hand, won't it be AWESOME to get back to the things I've been "modifying" out of my life for 2 years!
On the other hand, what really and truly scares me about the whole process; once we get past this "rejection based on human perception", because I hate that, black or white baby, period; is the surgery itself. I'm totally scared shitless they will kill me on the table. Because then all of this is totally pointless. TOTALLY. This is the part that makes me go WHOA. Right now, I may not have the best/fullest life, but umm HEY I"M ALIVE. But the other side of that is, if they don't kill me, and I come out the other side, I will have 6-10-15 years of normal living. Where normal means I don't have to fight to not only breath in but out. As Dr. Blue Eyes has pointed out, I have no idea how hard I breath. Normal people don't DO that, he tells me. To which I tell him no one has ever accused me of being normal.

Yeah there will be some major drugs I'll have to take.
But in number it will be 1% of the drugs I'm taking now. The time factored in will be minuscule compared to the hour/s it takes me to be ready to leave the house now.
Go hiking, yep. Camping, yep. Goat shows/chores, alone even, yep. Stay the night somewhere without lugging 2 machines, 10 drugs, 2 back up oxygen sources..... holy crap, yep! Not being a never ending burden on my friends and family, yep!

Is this the end all cure all? Well for my CF it is. We don't feel I have the intestinal issues, which means, for now, I'll be CF free and it WILL NOT come back into the new lungs. However, Out with CF, In with anti-rejection medication death. Right. Now I die from the transplant.

So right now I just try to get "in". In the program. On the list.

Noted in case my husband questions what we did while he was off hunting and sleeping all weekend.

• Unloaded and restacked 1000 pounds of alfalfa
• Cleaned chicken pen
• Cleaned baby goat pen
• Installed perch and nesting box to winterize the chicken coop (Hopefully my mom takes her chickens before winter)
• Fixed a better hay feeder/grain tub/waterer for the baby goats at the house
• Cleaned BBQ pit room and put away 4 wheeler w/ cover after husband used it and left it out in the yard for the chickens to roost/shit on. (Grr)
• Went to dump hay/shavings
• Did all the friggin' dishes
• Currently soaking the milk bucket and milk jugs in soap and bleach.