Hello All,
I have posted two blogs about emergency issues related to Periodic Paralysis. The first was about knowing when to call for an ambulance or when to seek medical help. The second was my story about my experiences with the Emergency Room (ER) and why most of us who have Periodic Paralysis fear the ER and the doctors we must deal with there. Today’s post is about how we can better prepared and get the care we need if it is necessary to be seen in the ER.
I have posted two blogs about emergency issues related to Periodic Paralysis. The first was about knowing when to call for an ambulance or when to seek medical help. The second was my story about my experiences with the Emergency Room (ER) and why most of us who have Periodic Paralysis fear the ER and the doctors we must deal with there. Today’s post is about how we can better prepared and get the care we need if it is necessary to be seen in the ER.
I created the
following after my own experiences and knowing that in the future I would
probably have to be seen again in an emergency situation.
Avoiding the pitfalls of the emergency room
Since I received my
diagnosis, due to the previous mishaps in the ER and the hospital, I have taken
a trip to the hospital with all of my records. I had them copy all of my
information. This is for four reasons. First, to prove my diagnosis; second, to
teach the doctors about Periodic Paralysis; third, to educate the doctors so
they will know how to treat me the next time I am in a crisis and fourth; to
clarify all the lies and misdiagnoses.
While there, I
explained that they have to monitor my breathing; make sure I do not choke and
monitor my heart due to the tachycardia, and arrhythmias, watching especially
for the long QT interval beat. They are not to hook me to an IV, not to give me
glucose or any medications. They are not to use a tourniquet or have me make a
fist if they need to take my blood.
They should look through my file and/or folder for any other info they
may need. It is also important for them to now listen to your significant other
(if you are lucky enough to have one), who will be your voice, if you cannot
speak or explain things to them.
Since that
conversation, and now having everything in place for the next emergency, I feel
better about the possibility of having to ride in an ambulance and being
admitted to the hospital if needed in the future.
The following is my
outline plan:
1.
Call hospital
administration office
a.
Explain your problem
i.
Tell them the history
of visits and the problems during them
ii.
Tell them about your
fears due to the previous visits
iii.
Explain your diagnosis
or possible diagnosis
iv.
Explain your plan to
bring in all your records for your file
v.
Ask how you can speak
to the supervisor of the ER
2.
Call the ER supervisor
or make an appointment to meet with him/her
a.
Explain your problem
i.
Tell them the history
of visits and the problems during them
ii.
Tell them about your
fears due to the previous visits
iii.
Explain your diagnosis
or possible diagnosis
iv.
Explain your plan to
bring in all your records for your file
3.
Meet with ER supervisor
or representative in person
a.
Bring your significant
other or a friend or family member
i.
Present your records
1.
Name and numbers of
your doctors
2.
Information about
Periodic Paralysis
a.
Your personal Emergency
Chart
b.
Bring the book: Living
With Periodic Paralysis: The Mystery Unraveled
c.
Copied from the
internet
i.
The types
ii.
Andersen-Tawil Syndrome?
iii.
Hypokalemic Periodic
Paralysis?
iv.
Hyperkalemic Periodic
Paralysis?
1.
How to take your labs
2.
How to treat your
symptoms
3.
How to diagnose, if not
done yet
3.
Your diagnosis reports
(from doctors) if you have them
4.
List of medications you
can not have
a.
No IVs
b.
No medications that
paralyze
c.
No meds that cause long
QT (if it applies)
5.
List of medications you
take
6.
List of other medical
issues
a.
Possibly diabetes,
heart problems, etc
7.
Records of previous
labs and tests which helped with the diagnosis or ruled other things out to
include but not limited to:
a.
EKGs,
b.
Holter monitors results
c.
EMGs
d.
EEGs
e.
Muscle biopsy
f.
Sleep studies
g.
Pulmonary study
h.
Physical therapy
8.
Letter from therapist
clearing you of mental issues
a.
Good to be seeing a
therapist to help deal with
i.
Failing health
ii.
Moral support
9.
Possibly a standing
prescription from your doctor:
a.
“if muscle weakness or
paralysis”
i.
“Blood serum labs for
Potassium”
10. Have hospital records copied by:
a.
Records department or
b.
ER personnel
11. Explain
anything else you believe is important
12. Always carry
a plastic folder with copies of the above
information in case you find yourself out of your local area in an
emergency.
A year ago, Calvin and I
moved to a new home in another state. I immediately called the nearest fire
department and hospital. I explained my medical issues. The fire chief took
notes and the hospital asked me to bring in my records to have them be put in
the system. I did just that.
About two months ago, this was all put to the test when I had a possible small stroke (TIA). Calvin called 911 and my doctor. She called the hospital ER and told them about my condition (Periodic Paralysis). When the paramedics arrived, Calvin handed each of them my emergency chart with instructions. They read them, asked a few questions and got to work checking my vitals and getting me ready to transport me to the hospital. With Calvin’s coaching, they followed every detail and I was safely taken to the ER. Upon arriving, the same thing happened. More copies were made of my emergency chart and the doctors referred to my medical records already in the system. They were very careful with everything they did or did not do to me or for me.
Calvin and I were very happy and relieved. They believed us and followed our instructions. We no longer fear a trip to the ER. However, with the co-pays and expenses related to an ambulance ride and a few hours in the ER and the testing involved, we now fear that we cannot afford to call 911. I am paying nearly half of my social security check towards being covered, but the costs we must still pay, make it nearly impossible to ride in an ambulance, go the ER or see specialists. I believe I have a new idea for another blog?!
