Re: Kerry's eval. part 1

February 16, 2008

Don't be more brief.

Well, the good part is really that you survived it all and are home

having completed it and between remembering the pain and laughing at

the absurdity of some of it, we're glad you're back.

I have had hundreds of tests and I'm with you completely that

everything has been mild compared to the esophagus

motility/manometry. I cannot use the alternative name I've given that

test on here. I cried, I came close to leaving. I don't think humans

were meant to have to swallow a bulb and a tube all the way down to

their stomach.

14 1/2 vials and three to go after? Oh my. Checking my dipstick, I

don't think I have that much blood.

Hotel attached to hospital isn't smoke free? And of course none of

the employees recognize the fact that you've chosen their lodging

indicates you have health problems or a loved one in the hospital,

but certainly not on your dream vacation.

The history part reminds me of UTSW Neurology and the guy was typing

from what I'd written to enter into system. He couldn't type. I so

wanted to kick him out of the chair and just enter it myself.

Well, again its great to have you home and sharing the story or sage

or nightmare or whatever label one puts on it.

>

> I honestly don't know what to say. Tell you I'm home and leave it

> at that. Tell you about the worst. Tell you about the best. Tell

> you... hmmm...

>

> Let's see. Got there safely, quickly and without any problems

> Tuesday evening. Reported in to Dad and checked in the hotel

> connected by skywalk to the hospital (paid by insurance as part of

> eval.). I had looked it up online and the reviews were it was fine

> and convenient and then others said it was the most horrific hotel

> stay of their life. It was very old, in no way nice or plush, but

> it was fine, clean enough and convenient. There was no wi-fi

access

> so I couldn't use the computer, but we suspected that after the

> reviews. The room was supposed to have a fridge, microwave and

> kitchenette. It had none. We figure we can make due w/ ice but

the

> ice maker was broke. So, now we've just got back to the room from

> shopping for stuff to snack on and drink during our stay and have

no

> way to keep it cool. I called to ask about it. The lady

> immediately gets snippy w/ me and says you didn't ask for it when

> you checked in. I said I didn't know I was supposed to because in

> my paperwork from the hospital it said that's what I was booked

> for. She says there is one room left w/ those facilities.

> gets the key and moves 2 trolly loads to the room and then I walk

in

> and it smells like smoke. I sat down and started crying because

> here he just moved it all and the lady is making me feel like I'm

> being difficult and I just want to not stress, get settled in and

> uggghhh. I know I'll be ill from the smell of old settled in smoke

> and the room was set up super " handicapable " . It had tile instead

> of carpet and was all wheelchair set up. It was as un " comfy "

> feeling as could be. Horrible. My husband is standing there

> waiting for me to calm down and make the command decision. I said,

> yes, go back get the key back to the other room and move everything

> back. We'll make due w/ all our food, drink, snacks on ice even if

> we have to go to the store for some. We had bought a big insulated

> bag and found another functioning ice maker. As we finally lay

down

> to sleep at 11:30 to get up at 5:30 am we hear an ambulance

siren...

> oh no, this is going to be a long night. Shockingly, that was the

> only time we heard anything and we slept great.

>

> As I reported to Joyce the morning started w/ 7am blood tests and

> I'm dehydrated to start because of the no eating or drinking after

> midnight. I am a big baby w/ needles and blood, but I'm better

than

> I used to be. I just warn them I'm a baby and I don't look at the

> needle. I've had blood drawn though multiple times for full

> physicals, hospitalization, testing during both pregnancy's and in

> August had the latest panel done for all the AI's, etc. I have

> never felt this bad. After a bit I said I really feel warm. Then

I

> said I mean really warm, I'm in a full body sweat and I start

> feeling faint and sick. I'm looking at like " serious, I'm

not

> kidding " . He says can we get her some water and a wet towel and

the

> lady doing the draw is loudly telling me to keep my eyes open.

> They're all rushing around and saying stay w/ me. She's asking me

> if I want her to stop and then my vein collapses so they have to.

I

> of course have no idea where we are in the process. I didn't know

> until hours later we were at 14 1/2 vials. After a little recovery

> time, water and wet towels she got 3 more vials from my other arm.

> Then off to Endoscopy, which shall henceforth live in my mind as

the

> torture chambers. I knew about the 24 hour PH probe, but somehow

> missed the memo on the esophageal manometry test. I have to wait

> around for a long time and then learn 2 students will be

observing.

> Finally we go in the room. He takes my history and that takes

> forever, he's as slow as molasses and can't take any multiple

> answers and I have to spell everything. I getting annoyed and just

> trying to get thru it ask quickly as possible realizing this guys

> limitations and working thru it. I'm giving the look and he

> understands. He said after even the students were making fun of

> him. After all this he gives me lidocaine to hold in the back of

my

> throat for a minute and then swallow. This is like fricken poison

> and has no flavoring to disguise. Why is this. They can flavor

> everything nowadays, why am I drinking something that tastes like

> poison. I'm totally grossed out and want to puke from that alone.

> Then he injects another gel to numb my nose and says now this is

> gonna burn. Oh boy, this keeps getting better. He gets out the

> probe and explains that he's gonna put it in my nose and then I

have

> to drink water thru a straw to swallow it down. What? So, now I

> realize I'm like a circus freak doing sword swallowing tricks. I

> get it all the way down and then I start dry heaving like nobody's

> business. I'm violently heaving and he's trying to hold me still

> and get the stuff set up. He's telling me to keep my eyes open,

> open my mouth and breath thru my mouth. Then of course my O2 drops

> low and he's cranking it up and telling me to breath deep. I am

and

> finally I get my breathing under control thru my nose and had to

> summon all my strength and go to another place. I used everything

> I've learned from the years of yoga, meditation, relaxation. I had

> my eyes on one place to block out the tech, the students, the tube,

> everything. I was focused yet, soooo not there. All the while I

> have to still pay attention to his instructions. I have to swallow

> 5 cc's of water from a syringe 10 times w/ the probe in 1 spot,

then

> he pulls some out and of course ends up having to push some back in

> and out, every time. Then 10 more times, then 6 times, then 6

> times. I didn't count I heard him telling the students this at the

> end. At the end of all this the probe is removed I'm furious at

> this torture and my nose, throat and inner ear are killing me. He

> tells me that the 24 hour probe is nothing in comparison to this.

> However, to complicate things they don't have the probe available

> yet so I'll have to come back in a couple hours to get it. So,

this

> now extends my fasting period and the 24 hours later for fasting

the

> next morning and messes up the schedule for that day and the next.

> I went to the EKG and echo and thank goodness those were as

pleasant

> as could be. I go back for the probe and I'm thinking that I have

> endured the worst and this will just be annoying in comparison to

> the garden hose I've had jabbed down my throat. I have to wait

> around for like a hour and during that time I have one of my

> coughing attacks and the tech walked in and was freaking out. He's

> asking is she okay, is this normal. said yes, just

> crank her O2, get her kleenex and a cold rag. I finally get thru

> that and now the probe. Guess what it is really not that much

> smaller and it seems way less flexible and now we have to go thru

> the numbing a second time and I'm already sore. I couldn't believe

> how uncomfortable it was and I've just had a coughing attack and

> those bring me to the edge of panic and any out of breath moments

> bring me to the edge of panic and now I feel panicked about the

idea

> of this thing in my throat for 24 hours. OMG!!! I was crying and

> telling I couldn't do it. I was so upset and so scared. He

> said we can have them take it out right now and go home, you tell

> me. But if we do you realize that's it. Just tell me what you

want

> to do. I had him take me to the coordinators area in the hospital

> and I could barely think or talk, but I asked to see her and

> proceeded to break down in tears again and I begged her to do any

> other procedure or reschedule the next morning so I had nothing to

> deal w/ besides this and could just go do nothing until the 24

hours

> was over. I was remembering that Judy said they didn't even do

this

> test anymore and did the BRAVO Clip which was a camera they put

down

> in you and was passed. I asked about that, she looked at me as if

I

> was crazy. Like she'd never heard of it. I said I know a woman

who

> just got her transplant hear w/ you and she had it. Nope, this is

> the test, this is what they do, this is what the doctor ordered.

> She could cancel everything and I could try another time. I really

> was 2 seconds from yanking this thing out of my throat. I had

> take me back to the room. I fully expected that sometime in the

> next 24 hours I would pull it out. Somehow, I was able to nap and

> somehow make it thru I don't know how. I have now just taken

> forever to tell this tale and I'm just thru the 1st part. My

> daughter has been patiently waiting on me so I'll have to do part 2

> later. This really is the worst part though, some other things

were

> annoying, aggravating, some fine, some pleasant, some fantastic.

> Anyway, thanks for all the prayers, well wishes and loving

support.

> Like I said the rest was all just there in comparison. I'll try to

> be more brief w/ part 2. Off to appease my daughter.

>

> Kerry

> IPF '01

> S. IN

>

February 16, 2008

Kerry, Oh! God bless you! How horrible to go through all that. You

are so brave. I hope the results of all these tests are positive.

Extra hugs and prayers,

Kathie WA nsip '96

-- In Breathe-Support , " Kerry " wrote: