Update on me-long X-Post
Hi all, I hope everyone has had a great holiday and new year. I wish I could say
the same. First off, I must apologize for sending this X-post to my groups, I
belong to many and do not have the energy or brain power to post individually.
As some of you know I have been battling dehydration with a vengeance! The last
week of December, I spent a lot of time receiving IV fluids. In fact that
Wednesday I received 2 liters of Ringers and then the next day I received
another 2 liters at my PCP’s office. It has become such a problem that my veins
are being blown and I am concerned that if there were an ER, it would be
difficult to find one easily. Because of that, my mom convinced me to call Mayo
on Friday, New Years eve. I fought with the resident on-call on the phone for
over 1/2 hour because I did not want to go through what I did 3 weeks ago.(they
stabilize me, then discharge with no ideas or any resolution to the dehydration
problem) He promised me that it would not happen and insisted that I go down on
New Year’s Eve. Well, that’s where I went and my new boyfriend Rob and I spent
New Year’s Eve in a hospital room at St Mary’s.
A different resident was on call for the weekend and he was unprofessional to
say the least. He tried to release me the next day…again with no answers!!!!!
I fought it and told him that I still did not feel well and wanted answers. He
reluctantly agreed to allow me to stay until Sunday. Sunday morning he came in
and said that he was discharging me and that I should make appointments with my
surgeon and GI doc that week. I know how impossible that can be at Mayo. It was
clear that he was h*ll bent on getting rid of me.
When Rob came over after staying the night in a hotel to be near me, I started
crying and couldn’t stop. The nurse came in and asked what was the matter and I
told her that I still felt weak and I wasted my New Year in the hospital for no
apparent reason AGAIN!
Well she must have called the Resident because he came in madder than a hornet!
He shut my door and demanded to know why I was so upset. I told him that I still
felt dehydrated and nothing was resolved. Then he has the NERVE! to say that my
room alone was costing $2100 per day and I didn’t need that kind of care. (I
didn’t ask to be put there!) He then said “who’s gonna pay for it?” (implying
that because I am on Gov’t assistance it was a waste of tax dollar $) Rob said
“who cares?” to which the resident replies “that’s really sad” then he tells me
that I could catch an infection from my fellow patients or from nursing staff
not washing their hands!! Can you believe that? That’s when Rob stepped in and
told him that nothing had been resolved and that I was still dehydrated and if I
left at that point he would be taking me directly to Urgent Care for IV Fluids.
Well that stopped the Resident in his tracks. God forbid I go to Urgent care
dehydrated after being in the hospital for 2 1/2
days! So he ordered IV Fluids and said I could stay until Monday. He must have
told the other Residents on the floor because the rest of the day everyone was
looking in my room like I was on display. Rob noticed it too.
So Monday morning my surgeon comes in and asks why I think I’m dehydrated when
my electrolyte panel was normal. I explained my symptoms and that I have had to
be hydrated even when the panel was normal. I told him that he did a fantastic
job with my surgery and that he saved my life. I also told him that I didn’t
feel like it was necessarily a “surgical” problem, but most likely my body
having problems adjusting to the new workings of my body. He agreed and I had a
GI consult and was moved that day to a GI non-surgical unit.
The GI team dehydrated me chemically (4 liters of Go lightly, 10 oz Citroma,
suppository, and 2 tap water enemas to prep me for tests. I had an endoscopy,
colonoscopy, and Barium swallow. In addition I was unable to take anything by
mouth for 12 hours. They did find a terminal Ileal ulcer in my colon and took
many biopsies. I’m still awaiting the results!
I met with the dietician again and she gave me instructions for a low sugar
diet! I already watch my sugar like a hawk! Then she had the Dr. prescribe a
electrolyte replacement powder that doesn’t have sugar and mixes up in water.
Then after all that, they were going to discharge me on Wednesday without
hydrating me!!!! I was so weak that I could barely walk the 4 feet to the
bathroom door. So a resident said that they would run an electrolyte panel and
if it was good they would send me home. Well I know that game, so I sent the lab
away and told my nurse to get the f*****g IV cath out of me. She had flushed it
earlier and I noticed that it was infilterating, but she said it was normal. The
nice resident came in to give me my discharge summary and I let her have it! I
told her that discharging me when I was so weak is unethical and that when Rob
came to pick me up, we would have to go to Urgent Care for fluids. That shook
her up, she said that is what we are trying to avoid…DUH!!!! She agreed to
hydrate me overnight and release me on Thursday.
Luckily there was a mess-up at the pharmacy with my IV solution, and a shift
change as well. When I showed my new nurse the IV site she agreed that it looked
bad and had an IV tech come up. From 4 feet away the tech could see it was bad
and she replaced it. I did finally get my fluids. The Dr. also prescribed a
canned supplement called Nutren 1.0 (made by Nestle). When the nurse sent down
the scripts she was told that insurance would not cover it. Mayo Store could
order it for me, but I declined. Turns out they didn’t cover the powder
electrolyte solution either, had to pay $65 for 12 packets, each packet makes 1
liter of solution. I figure it equals about 6 trips to Urgent Care! It is called
CERA Lyte 70 and is rice based.
That’s my sad tale of my new year. The good news is that Rob has been an
absolute doll about all of it. In fact he just called to tell me he bought the
BOGO Magic Bullet so he has one at his house. We celebrated our 3 week
anniversary on Thursday, though it feels like a lot longer. Aside from my
medical garbage, we have been able to really learn about each other. One night
we were on the phone over 12 hours! His family absolutely adores me and my
parents can’t say enough about him. Mom told me last night that for only being
together 3 weeks, our relationship has really had to go through a lot and it is
as strong as ever. She also said that she could tell by the way he looks at me
that he absolutely adores me.
Hope everyone had a safe and happy new year! Here’s a toast (protein
shake, of course) to a healthier new year for everyone as well.
Michelle M.
Highest weight; 307#
‘89Pre-VBG 280#
‘92 Revision: 218#
‘94 Bowel Obstruction
‘03 weight: 192#; Supposed to be revised to RNY; was adhesion
removal instead 
11/04 gall bladder, stomach removal, small bowel obstruction
removal, and end-to-side RNY; Dr. Thompson; Mayo Clinic, Rochester,
MN.
CW:125#