Have you recently been diagnosed with Antiphospholipid Antibody
Syndrome? Not sure where to start? The diagnosis itself can be a little bit
overwhelming. We've compiled a list of tips for people who are newly diagnosed
with APS from people who have APS.
These tips did NOT come from a Doctor or
anyone in the medical profession.
Find a good Doctor who knows about APS or who is willing
to learn about it. You may need to change doctors.
Learn as much as you can about APS. The more you know
about YOUR illness, the better you'll understand what signs to look for
and what to tell doctors/nurses if ever needed. Try to find websites
that site their information and are medically sound. Doctors are more
willing to accept information that has its sources cited, even better if
they are medical journals. There are also some well written books on APS
on our Publications page.
Read our APS brochures on the
Downloads page. Check out our extensive links
pages. Print articles that interest you. Highlight important sections
that you want to point out to your care team.
Be prepared for your doctor's appointments. Write
your questions down and get answers to all of those questions.
Depending on how much your doctors know, you may need
bring articles in to educate them on how to treat an APS patient. Be
prepared when going to appointments.
You may need to be aggressive to get the treatment that
is best for an APS patient. If you find yourself in the situation,
doctors are more willing to accept information that has its sources
cited, even better if they are medical journals. Practice what you want
to say ahead of time just like you would a speech.
Remember, the doctors are working FOR YOU. If they are
not willing to work with you, then fire them and find another doctor who
will.
Journal your symptoms and INR readings along
with Coumadin/Warfarin doses. Also take pictures of any rashes and
discolorations that you may have. They may not be there when you see
your doctor next. We have an excellent 3 year log book on our Cafepress site that
is less than $20.00. It's the size of a notebook and easy to bring to
appointments. If you have all of your information in one spot, it will
be easier to reference back if needed to see patterns in how you feel vs
your INR.
If you are on Low Molecular Weight Heparin (LMWH) or
Lovenox® (short or long term), you will also want to use a log sheet. We
have one in our 3 year log book that's located on our Cafepress site.
We also have a LMWH brochure
that's available for download on our
Downloads page. The brochure is about the proper way to
administer the self injections.
Find a good therapist. APS is a chronic, life-threatening
illness and it always helps to have someone impartial to speak to.
Learn the symptoms of a clot,
heart attack,
TIA, stroke, and bleeding. Knowing these
could save your life!
Inform family and friends on the symptoms of the above
and tell them what signs to look for. This could also one day save your
life!
Wear a Medic Alert bracelet that states you have a
hypercoaguable state and that you are on anticoagulants.
(Paramedics and sometimes doctors don't recognize what APS is. If you
say you have a hypercoaguable state, they WILL recognize this. Think
about the nature of an emergency you may have. In the event of a stroke
or heart attack you may not be able to speak.) This WILL be
important in case of an Emergency. Keep your information up to date on
the Medic Alert website.
The Do Nots:
Do not smoke. Quit if you do smoke.
Do not take birth control pills. They will increase
your risk for a blood clot.
Continue to drink plenty water, exercise and watch your
weight.
Make sure to take your Medication at the same time
everyday. Consistency is important later on if the memory issues and
brain fog are part of your symptoms.
Buy a Nurses Drug Book, it will help you learn about
different interactions with your medications. See our
Publications page for examples.
Get your INR tested weekly, go on the same day every week
if possible. (You will not need your INR tested if you are on Lovenox
shots)
Join a support group. There are people out there who are
going through the same thing that you are. It will help to share
experiences with people who understand. We have an online support group
located at www.apsforum.com .
On long trips (flying or driving) get up and move around
every couple of hours.
Be consistent in your diet and Vitamin K intake. This
will help to keep your INR stable.
Strengthen your spiritual life. Whatever that may mean to
you.
Know that you are not alone. Your symptoms are real.
The tips
above were provided by various members of the
APS Friends & Support Forum. None of these members are medical doctors. They
are all APS patients.
Page updated on: 11/19/06
The APS Foundation of America, Inc. website
and forums are independently funded and maintained by Heidi and Tina. We do not
receive any funding from advertising.
We subscribe to the HONcode principles. Verify
here.
DISCLAIMER: APS Foundation of America,
Inc. website is not intended to replace standard doctor-patient visits, physical
examination, and medical testing. Information given to members is only an
opinion. All information should be confirmed with your personal doctor.
Always seek the advice of a trained physician in person before seeking any new
treatment regarding your medical diagnosis or condition. Any information
received from APS Foundation of America, Inc. website is not intended
to diagnose, treat, or cure. This site is for informational purposes only.
If you think you may have a medical emergency, call your doctor or 911
immediately.
