Report on Kristie

April 14, 2005

Thursday, April 14, 2005 10:31 AM CDT

I spent the weekend nursing the pump every hour with bolus Gatorade

flushes through the J tube hoping to get ahead of the dehydration and

autonomic problems. It was a loosing battle. By Sunday afternoon I had

stopped putting out urine and at 10 p.m. when I went to flush the J

tube it wouldn't flush. I spent the next hour and a half trying every

trick in the book (coke, sprite, meat tenderizer and even vinegar) to

no avail. At 11:30 I gave up and called the GI on call at Hershey.

Apparently not understanding the urgency of the situation given my

underlying mitochondrial/metabolic disorder and the history I'd given

him since Friday all he had to offer was for me to go to the local ER.

Before leaving for the local ER I left a message for my GI doctor's

nurse telling her what was up and asking her to make arrangements

first thing in the a.m. for me. What a waste of time the local ER was!

They refused to follow my instructions re not giving me Ringer's

Lactate and would not give me anything else so I ended up leaving

without treatment. I came home and spent the rest of the night sucking

on lifesavers to keep my blood sugars up and pushing small amounts of

fluid through the G tube as often as I could tolerate without vomiting.

I was in the shower when Dr. O's nurse called and when she asked me

what I was doing I said I was in the shower trying to soak up some

water. We both laughed. She told me to get to Hershey and report to

Interventional Radiology as soon as I got there. After IR figured out

what was going on with the tube and fixed it they would ship me over

to clinic to be evaluated by the doc on call (Dr. O was not in clinic

on Monday) for admission. Sounded like a plan to me!

I got to the hospital around 11 a.m. and called my sister in law to

let her know I was there a day early. She was on her way out the door

so I couldn't give her the details. I told her I'd page my brother and

fill him in. When I got to IR and checked in they said they weren't

expecting me until noon. I told them I didn't mind waiting BUT someone

needed to get some fluids started A.S.A.P. They did and managed to get

me into the OR at 11:30. In the meantime, my brother had been paged

twice now and wasn't responding to the pages.

The IR doc took a look and decided that there was no obstruction and

that my tube had not migrated nor was it kinked (YEAH), but it was

irreversibly clogged so it had to be replaced. I was twilighted. At

the end of the procedure he showed me the tube and asked when it was

placed. When I told him February 1st he was very surprised. The

balloon was almost disintegrated and the tube was in bad shape. He has

an idea for a tube that may work better for me in the future, but it

has to be special ordered.

I drained one bag of fluid in IR and as the nurse was getting ready to

ship me over to clinic to be evaluated for admission when the clinic

nurse called and told her to send me directly to the ER for fluids and

admission evaluation. Well, by this time she had already pulled my IV

line (which had to go in the underside of my wrist I was so

dehydrated). The IR nurse felt very bad about this and apologized over

and over again. She escorted me up to the ER and went through the

whole check in process with me. We were told 2 hours before I'd be put

back in a room. At the ER check in I asked again to have my brother

paged. This time the ER receptionist got a message that all of his

calls were going to the unit. I asked her to leave a message that his

sister was in the ER.

It wasn't that long after that my brother arrived to see what was

going on. He sat with me for a while (Thanks Tim!) and then my sister

in law, Kathy and my niece Kat showed up to keep me company (Thanks

Kathy and Kat!!!). 2 hours turned into 6 hours before I was finally

put back in a room. The ER doc came in and did a quick history. I gave

him some information about mitochondrial disorders and their

management and also the protocol that Dr. Cohen wrote up for me and my

meds sheet.

The nurse came in to start some more fluids and I asked what was being

hung and he said normal saline. I questioned him about it and said

that I gave the doc my protocol which specifically states D-5 with

saline to start. The nurse said they would start with the saline and

add what was necessary when the labs came back. UGGHHH! What is the

sense of having a protocol if no one is going to follow it? This is

after all a disease of energy metabolism and the episode of

dehydration had compromised my energy reserves. Normal saline was not

going to restore that.

Oh, by the way, it is now headed for 7 p.m. and I still haven't had to

urinate.

So they run a bag of normal saline and give me phenergan for the

nausea, and we wait for labs. The labs come back looking pretty good

so all they need from me now is urinalysis. I did end up putting out,

but not a great volume (considering I've now had two bags of fluid and

my tube feeding have been running since 12:30 p.m.). The urinalysis

comes back looking okay so the ER doc decides to discharge me with the

knowledge that I still have an appointment with Dr. O the following

day. It is now 9:30 p.m.

I spent the night at a motel in Hershey which thankfully gave me a

late checkout. My appointment with Dr. O wasn't scheduled until 4 p.m.

I had a pretty sound night considering I was still under the effects

of the versed and fentanyl and didn't wake until late the next morning.

I decided to check our home voice mail around noon (now Tuesday) just

to see if anything was happening. Good thing I did! There was a

message from Dr. O's nurse saying that Dr. O had talked with everyone

who saw me yesterday and since I'm re-hydrated and my tube feedings

are now running again she wanted to wait a week to see me therefore

pushing my appointment back to its original April 18th date. So, after

calling everyone who needed to know; I and my bottle of sprite headed

for home.

I've still not recovered that will take some time. I think the week

break before seeing Dr. O will be a good thing in the end. I need time

to reflect on what to address with her. Protocol's for sure and how

much fluid intake I'm getting in a normal 24 hour period, but I think

there are other issues as well. Right now I'm still a bit crashy and

can't think too straight.

Love and Hugs,

Kristie

April 14, 2005

Hi, I just read your e-mail and wanted to tell you that my thoughts and prayers

are with you. My prayer group meets in the morning and I will request X-tra

prayers from them for you also. We meet at 9:00 am CDT each and every friday, I

was unable to attend week before last due to my having surgery on my right arm

on April first and last week I really wasn't the best member there but I think

this week will be much better for me and I will make sure you are in our

prayers. I will keep you in my prayers each time during the day when I find the

need to take my pain and hurt to God. I am attempting to recover from the

useIess, tragic and sudden death of my 48 year old son August 28, 2004. From

all appearances the doctors feel that he could have had a Mitochondrial

Dysfunction that no one was aware of. I had never heard the word until one of

my doctors called me mid December, 2004 and told me he was very confident that I

did not then and never did have Parkinsons, for which I had been

diagnosed in 2001. I made two horrendous trips to ER due to violent reactions

of the Parkinsons meds that if I hadn't had a caring doctor that wanted to prove

his point, I would have died from them as my cousin recently did. she had been

mis-diagnosed 10 years ago and by the time her neurologist retired and a new

doctor took over her case and told her he was pulling all the Parkinsons meds it

was too late for her. Your friend, Dolores