Have You Recently Been Diagnosed With Antiphospholipid 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.
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.
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.
Check out INR Tracker if you are more digitally inclined and want to record and track your INR information online. 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.
Use a log sheet if you are on Low Molecular Weight Heparin (LMWH) or Lovenox® (short or long term). 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.
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.
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.
Take your medication at the same time every day. Consistency is important later on if the memory issues and brain fog are part of your symptoms.
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 or Direct Oral Anticoagulants)
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 APS Friends and Family.
Be mindful when traveling. On long trips (flying or driving) get up and move around every couple of hours.
Watch your diet and Vitamin K intake—be consistent. 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.
Founded in 2005, the APS Foundation of America, Inc. is dedicated to fostering and facilitating joint efforts in the areas of education, public awareness, research, and patient services for Antiphospholipid Syndrome (APS) in an effective and ethical manner.
APS Foundation of America, Inc.
P. O. Box 801
LaCrosse, WI 54602-0801
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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. Please note that we will be listing all donor or purchaser's names on the Donor page of our foundation site. If you do not want your name listed, please contact us to opt out. If you think you may have a medical emergency, call your doctor or 911 immediately.