Have You Recently Been Diagnosed With Antiphospholipid Antibody Syndrome?

Have You...

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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.

Please note that 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 more digitally inclined and want to record and track your INR information online, then check out INR Tracker. There is a lot of good information on the site and you will be able to record multiple things and see trends in 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 last reviewed: 12/30/2015

The APS Foundation of America, Inc. website and forums are both volunteer run and funded by donations to the APSFA.

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