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Assisted Living Baltimore
QUESTION: Help, I need advice. Feel free to reply privatly too.
I've been on CAPD for five years. I was listed for kptx at JH for 2 1/2
years. Last summer, a new TX surgeon there required an update on my
evaluation. Meanwhile I asked my social worker and coordinater to look into
assisted living facilties in Baltimore near the TX center because I lived
alone in the countryside of PA and had a severe insulin rection that when I
came out of it, I found that I had knocked over a quarts lamp and had it been
on would have started a fire and burnt down my apt buliding.
Instead of any encouragement, let alone help, I was scheduled various
evaluation appointments all over the city which I could not keep because of
traffic and poor scheduling so I moved to Miami to try at Jackson Memorial
because of a much shorter waiting list. I hoped that my previous time served
waiting would be applied so that I would have been moved to the top of the
list. When I arrived I promtly moved into an assisted living facility and
found a good dialysis clinic. After three months of passing every test they
gave me my meeting with the KPTX surgeon turned out to be in vain because I
found out there still more tests that I was not aware of that needed to be
completed including a pysch exam because the SW had written her opinion on my
record that I was not a good candidate for a TX because I was
"argumentative". This was an unfair report because it had nothing to do with
my compliancy issue and everthing to do with my irritability and lack of
transpersonal communicaton skills due to the incredible incopetant big
business hospital bureacratic runaround I had been given. So much for
demanding decent customer service for a $100,000 transplant not to mention
the years of follow up care. Maybe I watch too much "Sapranos" on HBO.
Because of this and further unnecessary delays I left town again to try yet
another center this time at Shands in Gainesville, FL.
Well, after more delays the psychiatrist says I have anger issues and no
social support system and schedules me for therapy that I agree to. (I'd like
to see what kind of social support he could get on $535/mo disability)
Meanwhile he writes a letter unbeknownst to me advising the surgeon not to
list me. When I saw the surgeon to plead my case, he tells me that I would
need to get therapy for a year and show compliance with their dialysis clinic
before they would consider listing me. That immediately struck me as a death
sentence and I violently threw a clip board on the floor and stormed out of
the exam room. Today my nephrologist assured me that he had given me a good
reference as being a totally compliant and one of his best patients with
excellent labs so I've contacted patient advocacy and asked for an appeal
before I pursue the legal route. Here is my case,
1) I've waited long enough. After five years of peritoneal dialysis I'm still
fit enough for the procedure. If I wait another year the is a good chance my
health will degenerate to the point of no return.
2) I will go to prescribed therapy but they must agree to list me as soon as
they feel that is completed and I will no longer publicly display anger at
constant bureaucratic abuses.
3) My temper has never hurt anyone and times I think is is the only feeling
that makes me feel alive and motivated. Should I be condemmed to a miserable
life because of it and other's lack of understanding?
3) Don't understand why they can't understand that my anger issue and my lack
of trust will completely disappear once I get listed and don't have to deal
with these shrinks that are playing God with my life and preventing me from
moving on to becoming a productive tax paying citizen instead of an
outrageously expensive federally dependent charity case the rest of my life.
ANSWER: Anonymous,
Im sorry to hear about your problems.
There is another person on this list who has very similar problems to
you. He seems to be a bit of an idiot and has some psychological
problems , but may be able to share some of his experiences with you.
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