Hello Everyone,
I have been a member of this group for a while, but I have not posted
until now. I have a real problem and I cannot seem to get it under
control without filing charges. This is not something I would like to
do.
First ~ My father is in Kidney Failure. Last June his kidney function
dropped to 10%. He needed to have a peritoneal catheter placed for
home dialysis.. I contacted 6 surgeons in my area and only two
could place the catheter. Both refused to treat him because he had a
Type 4 latex allergy. (More to the story, but would take too long)
Dad would also have to stay with me during the procedures. THE BAD
NEWS - I am Type 1, anaphylactic TO NRL. We got through those days
with an extreme amount of stress for us all. Then in November, he
needed surgery again. His peritoneum perforated and caused a hole in
his lung. The dialysis fluid was being pushed into his right lung.
They had to removed 2.5 qts, I almost lost him. He needed a fistula
put in his arm. Those two surgeons were the only ones in the area
that did that type of surgery. We ended up going out of our area to
find a surgeon. (causing a break in the medical team for my father,
which is important for any patient)

Second ~ This past week I needed physical therapy for a frozen
shoulder. I called the facility. I explained what would need to be
done for them to enter my home. I had already shown another center
how to do this. I made sure all their questions and concerns were
addressed and answered. I explained, I have lived with NRLA for 10
years now. I asked them not to dismiss me, I was not a big problem.
That maybe we both could learn something. By living with NRLA for 10
years, we know how to stay safe and how to keep our home latex free.
They called back and refused to treat me, claiming, "I cannot expect
them to remember everything. Claiming I was too high level care" for
them. By the way, I have this in writing. However, for me, this was
the last straw.

I have worked very hard in my area to raise the awareness of NRLA and
the dangers of Latex Glove use. I have worked with four hospital and
helped set up their Latex Avoidance Protocols. I even tested them,
Myself, by having surgery done at their facility. My primary care
physician removed all latex products from his office. I helped
Michigan Catapillar change their glove use to Non-Latex. I am working
with a friend who works at DTE to help them make the switch..

At the moment I am waiting for a return call from Michigan Civil
Rights to file a complaint. Only, I do not want this to become a
problem for other NRLA patients seeking medical treatment. However, I
cannot let them continue to do this. Surgeons cannot create NRLA in
their patients and then refuse to treat them because of it. This is
just WRONG on too many levels..

I would like input before I file any paperwork? I do not want to
damage the good I have done in this area. (I know they have flagged
my files as "trouble maker" and I really don't care. Although, the
last time I would not allow a HCW to bully me, a dear friend of mine
suffered for it. They almost killed her.) What can I do to help this
situation in a way that would help all NRLA Patients? Making sure
none are not harmed in the process?  

Thanks for letting me bend your ears for a bit. Any help you
can offer would be greatly appreciated. I just want to do this the
right way.
Trudy