When my daughter was born, I was in a state-of-the-art high tech hospital in
Minneapolis, the home of the Sister Kinney Institute. Wouldn't you have
thought that my doctors would have tried to contact someone there when they
saw that nothing was working for me and that they might lose me? Surely at
Sister Kinney there were doctors who knew how polio survivors react to
medication, O2, etc. Many of my nurses saw me as a "problem" patient. Their
"take" on my situation was that I didn't want to "bond" with my baby! God!
I was struggling to breathe; just holding her on my lap completely wiped me
out. I had no energy left over to give to my daughter at that time even
though I wanted to. They had no idea how this ripped me apart inside; yet
they were so quick to judge. This was a time when I did feel rather
discriminated against -- at the very least, grossly misunderstood. As I
mentioned earlier, I still have a lot of emotional wounds to heal around this
time in my life.
(Perhaps had I been trached at that time, I would have recovered a lot
quicker. It was several years after that when I finally got my trach. This
is another blessing of having a trach, in my opinion. I don't have to be
intubated any more! Long periods of intubation just never really worked for
me.)
This whole experience made me a firm believer of the need for a patient
advocate whenever one has to go into the hospital. I was too weak and
stressed out to fight for my rights as a patient. Thank goodness for my
husband and my mother who were there a lot with me. They questiioned the
doctors, the nurses, the respiratory therapists. I heard a dr on a talk show
recently speak about a book that he wrote called _How To Get Out Of The
Hospital Alive_. It's based on his own personal experience as a patient.
Because of mistakes, he almost ended up a hospital casualty. He strongly
advises getting a patient advocate if you have to go into the hospital; as a
matter of fact, he said that if you don't have a family member or a friend
you can ask to be that for you, you need to hire someone. It's that
important. Amen to that!
It is just so satisfying to be able to share these experiences with others
who've been there, done that, too. Never have I ever had anyone else who
really understood the fear, the desperation, the hopelessness, etc. that I
felt then until now. Thanks for being here. Thanks for listening.
Carol