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Re: [IP] Comments appreciated-long
Hi, I'm answering on behalf of hubby Shane who is the actual diabetic...
>1. What is the single most important advice would you give your doctor?
Realize that for your patient, every aspect of his life is affected.
There is NOTHING that he can do without first thinking "how will this
affect my blood sugar and what do I need to do about it?" Really think
hard about how it would be to live your life that way before you start
>2. What advice would you give your CDE or Nurse?
Stay informed of the LATEST in diabetic care. Go to conferences or
exhibitions, meet regularly with representatives from pump companies.
Know what the newest meters, etc. are and find out whether they might be
good for your patients. Learn what info is available on the internet -
tell your patients where to find the really good stuff and steer them
away from the crackpots. Sooner or later your patients are going to find
the internet, so its better that you help than to let them wander
>4. What is the most important thing that hospital personnel can do to >improve the care of diabetics during a hospital stay?
LISTEN to what the diabetic and his/her family says!!!! Understand that
they know as much or more than you do about handling this disease. If he
says he needs a snack give it to him NOW!
>5. As a care giver, what advice would you give your medical professional >about your involvement in the treatment decisions of your child, parent or >significant other?
Let the caregiver be involved. Perhaps even encourage them to become
involved if they are reluctant. Do not order the caregiver out of the
room when you start asking questions or begin the exam. The choice of
whether the extra person should stay is the decision of the patient, NOT
the doctor! Know that these caregivers are often responsible for a good
deal more than you think once the patient leaves the office. If you want
the diabetic to be successful, you better make sure the caregiver knows
the whole story and has all the relevant information.
>7. What was your single absolute worst treatment nightmare which could have >been avoided through better care/education/thoughtfulness on the part of the >medical professional?
well, Shane has many stories like Randall's of getting insulin, then not
getting food... However, our WORST story (and we have many) is: While
out of town visiting his mother, Shane has a low during the night (3am)
and begins convulsing. Gets taken to ER by ambulance. EMTs refuse to
give him any glucose. no glucagon, no IV, no nothing. Gets to the ER.
His mother is telling them over and over "he is diabetic, he is low, he
needs sugar NOW". I cannot emphasize the next part enough: He is wearing
a medic alert that says he is diabetic!!!! The EMTs had already done a
blood sugar and knew he was low. The ER doctor ignores all of this,
decides Shane is not a diabetic, but is instead on (illegal) drugs and
that is why he is convulsing. His mother and her husband are both
practically screaming "he is not on drugs, he needs sugar". Then the
doctor decides perhaps he has epilipsy. Orders multiple brain scans, CT
scans, saddle block... Finally his mother calls his regular doctor at
home (4am) and tells what is happening. Doctor calls up the hospital,
explains who he is, says "that man is my patient. give him glucose NOW.
don't do any scans. if you mess this up I will see that your license is
revoked!" Finally Shane gets some glucose...
Bottom line: LISTEN to what the patient and/or his family is telling
you, particularly when presented with evidence which backs them up.
>8. In one sentence, how would you describe the effect diabetes has had on >your life and the lives of your family?
I don't need a senctence, just a word: devastating.
Further explanation: Shane was raised believing he'd never see age 30.
He rarely dated becuase he figured no one would want him. When
traditional insulin regimes did not work for him, the doctors assumed he
was doing something wrong on purpose. At one time, he was so hounded and
harassed by his medical team that he refused to see a doctor for 7
years, even going so far as to refuse to go to the hospital when he had
a kidneystone, instead suffering at home. Diabetes has taken Shane's
sight in one eye. He can no longer drive at night. He has kidney damage,
which although currently stable will loom over us for the rest of his
life. He must take insulin, asprin, acrupril every day for the rest of
his life (unless a cure is found...), and more drugs will probably get
added to this list as he ages. He has on average 1-2 doctor visits each
month by the time he sees the eye doctor, the endo, the CDE, the kidney
guy 4 times a year. We spend thousands of dollars each year in medical
bills. That money could go towards furthering his education, saving for
retirement, paying off debts... Not to mention the time and energy
wasted on stupid insurance companies. I worry whenever we must be apart
overnight (business trips, etc). If he is ever late, I don't think "he
is stuck in traffic", I think "he had a reaction and he is laying in the
ditch somewhere". He is constantly harassed by complete strangers and
even some relatives about what he can and cannot eat.
Yet despite all this, he is basically a happy guy with a positive
outlook. We have a very good (and fairly normal) life together despite
all these things! Please make sure that the medical group also hears the
message that diabetes does not have to be a death sentence, or even a
sentence to a life of misery!
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