Inquiring minds want to know

We left on Wednesday for my 2 day trip to San Fran for testing, which means 3 days away from home. We left the critters here in the care of my mother and son and I (god help me) took Bill with me, because they said I'd need a driver home after the last test.

We stayed in Mill Valley which is this little quaint old historic mill town just this side of SF. The motel was about half of what I would have spent in the city and I probably drove less time getting from there to the hospital than I would have if I had actually stayed IN the city. Our motel room was HUGE, but upstairs, which sucked with the unlit walkways at 6 AM each morning.

The first day of testing was lab work first thing in the AM, with the lab tech who wasn't thrilled that I could have cared less about her "talk" about the proper way to take a urine sample. Lady, this isn't my first rodeo, save the sweet talk. When I tried to rush her through her little speech she says "I'm trying to make sure you're not confused!" (she was oriental with a think accent, I'm not sure which of us she was trying to direct) I'm pretty sure at that point I rolled my eyes... but I TRIED really hard NOT to. Isn't it all about the effort?

Once the vampire drew her 13 (yes really 13) vials of blood we were off to have hoses crammed where they just don't belong. Luckily all of my tests this day, with the exception of one add on were in one building, this saved on my lung function and made for a MUCH easier day.

Up to the 6th floor to the GI clinic to have a 24 hour acid test and a Esophageal blah blah blah test. Hey, I take the tests, I don't memorize the names. Nor do I remember the names of doctors or techs or nurses. This may seem rude to them but I see so many, and most only once ever, I just don't bother. My mind has enough clutter, really. The VERY nice woman calls me back to the torture test from hell, and actually explains WHY I have to have the torture test from hell, which THANK YOU. Her name was Joy. I know this because I spent the next 15 minutes staring at her chest while she tried to shove a pencil up my nose. Epic FAIL. We could not get a catheter to pass through either nostril. Since that couldn't happen, that meant I didn't have to wear the tube overnight either, nor did I have to totally screw up the cardiac unit the next day while they had to wait for me to get the tube removed before they could have me.

Down to the Plaza Level for an abdominal ultrasound. Ever had a baby? Pretty much the same damn thing. So either they didn't believe me, the urine test, and the blood test that I wasn't pregnant, or they really did want to look at my liver and kidneys.

Down again to C level for a CT scan. Giant donut x-ray basically. IT takes clearer pictures in slices. So they can get a much closer look at what's going on in there. You lay on a table and they pass you back and forth through the donut while the camera whizzes around inside the donut. It really sounds a little like a jet taking off, and the tech told me it can go even father than what I heard it going. Some ten revolutions every .4seconds. I will be interested to hear what the differences between last year and this year were. I'm hoping that my Pum. Dr can get copies of all these results.

Now, back up the the Lobby of Parnassus building, only we found that at some point in our comings and goings in and out doors, we were in a different building. I'm not sure how we did that exactly without ever going outside, but we had to go outside to get back. Ehh, whatever, it was fine and we were only next door. I finally receive a call back from one nurse coordinator about trying to combine one other blood draw with the heart test I was having the next day. Turns out the heart test would be ventricle (through a vein) not arterial (through an artery), so them drawing blood wouldn't work. Dammit. This meant I was going to have to have someone shove a needle in my wrist and dig around for the artery there. A note should be made I HATE this test. Almost as much as I hate a failed nasal catheter.

Now I'm technically done with all the tests for today, but to save myself running all over in the morning before the heart test, I run up the block and have my EKG done. While I'm there my nurse coordinator FINALLY friggin' calls me back from the day before. She has scheduled my ABG (blood gas, needle to wrist test) on the 5th floor. OK, I make sure I ask twice which floor. 5th. She's sure, I'm sure, we're good to go!

We head back to the 5th floor of the first building we were in. We read the signs. Nothing screams GET BLOOD SUCKED HERE. One way says: Lung and Allergy. The other said something that sounded blood like. Hemoglobin Clinic or something like that. We headed there. They looked me up on the computer and said Oh no that's on the 6th floor, GI clinic. (Read first part again about not remembering names....) So off we head to the GI clinic. Or should I say,back to the GI clinic. We round the corner off the elevator and I'm all Dude, we've been here before. Bill says, "how can you tell, they all look the friggin' same?" Then I'm all, DUDE, IKNOW we've been here before. Oh yep, there is the receptionist lady from 8am. I said to her, ha, bet you thought you were done with me HUH? So she is totally sweet, makes 5 phone calls (5, because my nurse coordinator doesn't return calls, or apparently answer her phone) and finds out that YES I am supposed to be on the 5th floor. At the allergy clinic. I thank her profusely and off we head the allergy clinic.

I might mention that at this point it's about 11:30. I haven't eaten since the day before at 6pm, and that was only 1/2 a grilled cheese. The elevator is really beginning to be a head spinning experience and these elevators go at mach nine. We're sitting waiting to get this one last test, so we can just leave and eat real food. And waiting. And waiting. Then this man start talking to me. Do I look nice? Do I look friendly?Man, you have a southern accent, I look at you and see fried chicken. Turns out, he was a totally nice thigh, I mean GUY, who had a double lung transplant in '04. The, hot & sour soup, opps, man, he had been talking to before us, was a single lung transplant in '03.

Finally they call me back for my blood stick and we find out how unprepared some clinics are. You see, I'm horribly allergic to rubbing alcohol. It's a real pita at a hospital. They are not prepared for this at all. Now, they can use betadine, they can use a baby wipe, just don't use anything with alcohol. Turns out there was NO betadine on the floor. All of their wipes were expired, in Jan of '09 (check the stock much?). The poor tech finally found a bottle of betadine somewhere and we got the draw done. But not before I scare him by telling him I hope he's good and hurries up, I'm starved I haven't eaten in 17 hours. He stops, says, have you drank anything. I bat my eyes, lie like a rock, and say yes, plenty (4oz of My Dew totally counts). He breaths a sigh or relief and says phewwww he was worried about dehydration.

Then we ate. Went to the motel. The end.

Just kidding.

Well, not really. We left SF, saw an Outback Steak house, planned dinner, went back to Mill Valley, ate at DipSea, got a stomach ache, toured around Mill Valley a little (as long as you consider driving around and stopping a the pet shop, touring), drove out the Stinson Beach (their ocean is as ugly as ours, IMAGINE THAT), went back to the motel, and vegged until we went back to Outback for dinner.

When we finally did go for dinner we realized Outback was actually in a big box mall. OMG. I could have walked around Best Buy and Ross or Babies'R'Us ( after the urine, blood and ultrasound it's been confirmed we will not be needing such a store) rather than drive to the ocean. * forehead smack*

So I'll save the Heart test for tomorrow. This was enough to write today. The heart test day is a whole post worth on it's own. And I have the scars, bruises, and rash to prove it.

So I had these great plans at 9:30 on New Years Eve to throw together a year in review picture post.

I discovered that A) I don't have any pictures from this last year on my computer at all and B) maybe I should have thought about this a little sooner. (Like maybe during the 10 hours today I spent scanning the TV for anything [oh god please, ANYTHING] to watch, while I felt like crapola and stayed on my 02.)

So maybe my posts will help.... I blogged at least once a month right?
No? Really?

January found me sick and I landed in the hospital in SF after a terrifying plane ride. I don't care who tells you it was "lovely and calm", she lies.

February found me still in recovery mode from being sick. It also was the start of kidding season.

March it was back to business as usual. Our last kids were born by the 2nd of the month and we lost our herd matriarch, we came very close to selling the whole herd. I fell on my ass and bought 8 chickens in the same month. I must have hit my head when I fell.

April, wow I am a really dull read. *tap tap* Is this thing on? Feed changes, doctors appointment and the start of show season. Oh and work....

May we lost a friend, went to a couple goat shows, finished our first doe, and it rained. And work....

June we hauled the kids out of the yard, reaffirmed the fact that I HATE Purina feed, and made plans to go to a long show out of state.

July we went to said long show out of state and had a great time. Bringing home a crap pot of ribbons helps. Oh right... and work.

August I posted NOTHING all month. Wow. You people are still here? Right. Only because I'm stuck in your feed reader huh? It's ok, you can admit it. Well I know we had our fair. Drama, blah blah blah, same BS different year, good judges though. I saw my DR and he wanted me to drowned myself for good health.

September we lost a close friend of my husbands unexpectedly from a heart attack. We also lost a former co-worker of mine from the fair. I just kept hoping I wouldn't be three.

October I lived to see another birthday but as usual didn't celebrate. Made an appointment with the lung transplant team for Nov., Greg caught a cold and shared, and I recapped all the reasons you should stop smoking.

November I saw the transplant team and got the go ahead to start having the pre-transplant testing. We had Thanksgiving dinner with my mom and got a new puppy. Oh and I still had a cold. I just can't kick shit like I used to!

December we had the trip from hell that I never recounted here (sorry) for the beginning of this testing BS. We spent christmas with my mom and Bills parents came for Christmas eve.

happy New Years Folks. I hope you all have a safe and happy new year.

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.