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Re: [IP] Comments appreciated

On 8 Sep 00, at 22:26, Tom Wellman wrote:

> 1.  What is the single most important advice would you give
> your doctor?

I am a person with a medical problem, not a medical problem with a person 
attached.  My life involves many more things than blood tests and insulin 
shots or boluses.  I have a job, a family and a life that I have to continue 
with - my treatment plan should not dominate everything else but should 
integrate in a seamlessly as possible.
> 2.  What advice would you give your CDE or Nurse?

Forget everything you heard in school or seminars more than two years ago.  
There is no such thing as a non-compliant person with diabetes.  Those you 
want to label with that term are really suffering from non-realistic and 
badly planned treatment protocols.  Try to live your own life according to 
the protocol before you demand that a patient attempt to follow them.

> 3.  What advice would you give your Pharmacist or Doctor's
> office staff?

People with diabetes are long term patients - if we need to get advice from 
the doctor or pharmacist we should be treated just like a collegue of the 
doctor or pharmacist.  Many times we are asking a question that can be 
answered yes or no and the answer to the question can keep us out of 
medical trouble.  Don't write us off as cranks/crocks (what the medical 
staff around here calls patients who are easily dismissed as idiots or drug 
seekers) without first making sure what we are asking for and what we 
need.  There's a lot of difference between a crank asking for another 
prescription for narcotics and a diabetic who is afraid of a site infection 
asking for antibiotics.

> 4.  What is the most important thing that hospital personnel
> can do to improve the care of diabetics during a hospital
> stay?

Learn about the condition, pay attention to the little things.  We've all 
heard horror stories about the nurse insisting on giving the patient their 
insulin (even Humalog!) and then forgetting to give them their food.  And 
everybody is surprised when the patient has a bg crash? Caregivers in the 
hospital setting must NOT try to manage the person with diabetes if they 
are competent to manage it themselves.  They should ASSIST instead.  The 
most important thing is to remember that not all people with diabetes are 
identical and the same stupid practices they've used for forty years are 
actually dangerous to someone on a tight control protocol.
> 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?

Listen, listen, listen.  Share information, be willing to answer questions even 
if they don't seem to be immediately obvious and listen, listen, listen.  Then 
think about how you would react if it was your family member who was 
being discussed.
> 6.  From an emotional/mental/spiritual standpoint, what can
> medical professionals due to help you improve your care?

Remember that all people have value as persons.  Respect their emotional 
states and recognize that diabetes causes emotional, mental and spiritual 
trauma in addition to the gross physical effects.  Be quick to recognize 
symptoms of depression, moodiness or anger, and be willing to guide the 
person to seek counseling or help from a professional who is experienced in 
dealing with people who have a long term medical condition.  NEVER SAY 
"it's not that bad" to a patient.  At that moment, for that patient, it IS 
that bad.  Make a list of resources in your area that can help, from the 
hospital chaplin and local ministers to the mental health agencies.  Help your 
patients understand that it's not bad to seek help - it's bad not to seek help 
with these kinds of problems.  They are not alone - and as a professional 
it's part of your responsibility to make sure that they recognize this.
> 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?

When I was in the hospital being trained on MDI, about 14 years ago, the 
nurse came in and demanded that I take my shot.  It was thirty minutes 
before mealtime and Regular insulin had to be taken before the meal.  Then 
she left because she was working a split shift.  The duty nurse who came on 
assumed that the first nurse had brought my food to me.  An hour later 
when I called and said I needed my food because my bg was around 45 she 
began trying to get the tray delivered - but it had been taken back because 
it had sat at the nurses station until the pickup time.  I called again and the 
nurses finally got some crackers and milk - but by that time my bg was 
about 25, I had a splitting migrane as I usually get from a low, and I was 
shaking, my temper was getting ready to detonate and I had eaten every 
sugar tablet that I had in my room...  I was demanding to see the charge 
nurse, the doctor, the ombudsman, the nursing supervisor and the director 
of the diabetes center...  finally, they brought the food - almost three and a 
half hours after I had taken my shot.  

The sad thing is that this type of incident happens with regularity at most 
> 8.  In one sentence, how would you describe the effect
> diabetes has had on your life and the lives of your family?

Not good.  It has prevented me from continuing my education because if I 
don't have the medical insurance from my employer we go bankrupt.  I have 
been unable to do many things because I've had to eat, maintain a schedule, 
and always have to carry a ton of junk with me.  Since I've gone on the 
pump things have improved a lot, but there's still that pile of junk and my 
wife is fearful of letting me drive a long distance by myself or go sailing 
without a crew.  She's always worried when I travel, because she's seen me 
at my worst when my bg crashes and is afraid of what could happen if I'm 
in a strange place and that happens.  

My five year old sons know how to do a bg check, and have even asked me to 
check them.  One of them has been talking about how his friends fathers 
don't have medicine boxes.  He's quick to notice when we run into someone 
else who has a pump and he gets excited because there's someone else who 
has a medicine box like Daddy.  My children have also learned to offer me 
food if I start acting oddly.  I don't like the fact that my children 
sometimes have to take the responsibility of taking care of me by trying to 
determine if my bg is crashing...
> Please feel free to respond in any way (privately if you
> like) to these thoughts.

I hope you do well in your speaking!  Be an aggresive advocate and take no 
Rev. Randall Winchester
WD4HVA (email @ redacted)
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