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Patient
Strategies for Good Outcomes
Become
the team leader of your medical team.
Remember that you are paying, so hire professionals who are
competent, compassionate and communicate well. Understand
your condition.
Today, with the use of trustworthy sites on the internet such as the
National Institutes of Health, the National Library of Medicine, the
Office of Rare Diseases and the Genetic Alliance portal to more than 600
resource organizations, it is becoming easier to find quality information.
Lay advocacy groups are becoming experts in their specific condition. This
enables consumers to prepare for doctor visits with a list of intelligent
questions and to have information about different treatment options,
including clinical trials. Manage
the routines of dealing with your condition.
Remember to take medications and attend medical appointments. Keep a
health history form up-to-date so that this can be easily sent to new
doctors and also for your own ease in remembering what screenings,
medications, etc., you have had. Monitor diet, rest and exercise. Acknowledge
the emotions that come with the diagnosis of, or life with, a genetic
condition.
Recognize fear, anger, depression, frustration, and isolation. Seek
professional help if things are really bad or perhaps locate a support
group for people with your condition. Find ways to reduce stress that are
enjoyable such as walking, reading, listening to music. Be sure to
schedule a break for yourself if you are the primary caregiver. Reach
out to friends and family, even if activities have to be modified.
Try to maintain relationships by clear communication: “I need,”
“I feel,” “I’m afraid of.” Be specific when asking for
help: “Could you please go grocery shopping for me on Thursday?”
“I’d love it if you could prepare dinner on Thursday,”
“Will you please read the newspaper to me?”
“Will you just sit next to me, hold my hand and say nothing?” Stay
apprised of health insurance issues.
For example, what procedures require pre-approval; what is your annual
deductible; what is your lifetime cap; what protections do HIPPA and the
new HHS Privacy Regulations offer? Stay
sensitive to privacy issues.
Who needs to know the information? If in doubt, don’t disclose. Never
give blanket disclosure authorization. Maintain
a positive outlook – an “I can do” attitude. Replace
negative thoughts with positive action – not “why me?” but “what
can I do?” Designate
someone to coordinate your medical management for you if
you are unable to take on a proactive role. Learn
to accept your diagnosis and live your new life. Integrate
the business of living with a chronic condition into your life and move
on. Remember, you are much more than your disorder. Accept and understand
what is “normal” for you, which may include an increased amount of
time spent on medical issues and some physical discomfort. It may not
always be possible to “win” the fight with a genetic condition –
some are terminal. The knowledge gained from the battle could be
considered precious, and victory a deeper love of those who shared the
journey. Realize
that sometimes blessings and insights come from living with a genetic
condition.
Perhaps you learn to set priorities, value the use of time, become more
empathetic, learn who your true friends are, and take care of unfinished
business. Think
of all of the above in simplified terms:
think of the five vowels – those little letters that all words need:
A
Attitude
E Emotions
I Information
O Outcomes
U Understanding Maximizing
the promises of medicine. A
PBS TV special, Critical Condition, stated the following: “The
quality of your healthcare depends as much on you as on your doctor, on
your being informed, on your asking the right questions, on your being
your own best advocate. Your life may hang in the balance.” To
reap the promises of medicine in the 21st Century, we must work
proactively to manage our healthcare and live our lives to the fullest. |