antiphospholipid syndrome

My name is Melanie and I have recently been diagnosed with Antiphospholipid Syndrome. Please understand that this blog is solely for sharing my experience in hopes of spreading awareness and gaining knowledge about this disease, this is not medical advice. I am 47 years young and I have had 4 strokes as well as spleen infarct since November of 2009. I have experienced memory loss, confusion, frustration, severe head aches, depression, temporary blindness in one eye as well as other symptoms. It has been extremely difficult to find information about APS. In the hospital I was in the doctors and nurses told me that this is the first case they had ever seen. We were learning together.

After being diagnosed, I was put on Comaudin. My INR numbers set at 2.0 to 3.0. I continued on to have 3 more strokes while on Comaudin. The doctors and the Comaudin clinic even increased my INR range to 4.0 but that was not successful. I was placed on Lovenox injections after each hospital stay along with Comaudin and still had strokes. As soon as I stopped the Lovenox injections I would have another 'episode'. My last hospital stay was in April of 2010. It was in that hospital stay that my hemotologist deemed my case a 'Comaudin failure'. I now give myself 2 injections a day of Lovenox, 100 mg each. That is a high dose but with my history my doctor thinks that this is the only way to keep me from clotting and having another stroke.

It is my hope, in writing this blog to help others to find the resources that are available to them but who might have a hard time in finding them (I know I did)! I am in constant contact with my insurance company, my hemotologist and the pharmacy. I still cut through red tape but it is ok, I have been dealt these cards and I can and will handle it with grace.

Giving yourself injections might make some squeemish, but when you are faced with either giving yourself injections or stroking out, the decision is an easy one to make. I have "marbling" and bruising at the injection sites but I have found that applying ice packs to the site or the bruising is a tremendous help. I do try to avoid injecting into the waistline or where you know your clothes might press on the injection site. I tend to keep the injections in the fatty tissue areas, stomach, upper thighs (if your stomach needs a break).

While this disease is treatable, it is considered a life threatening diesase and is for life. I have done some searching online about APS and I will be posting as I find out more information. Please feel free to share your story with me and let me know if I can help in any way possible, if only to listen!

Melanie




What is antiphospholipid syndrome?

The antiphospholipid syndrome is a disorder of the immune system that is characterized by excessive clotting of blood and/or certain complications of pregnancy (premature miscarriages, unexplained fetal death, or premature birth) and the presence of antiphospholipid antibodies (cardiolipin or lupus anticoagulant antibodies) in the blood. Patients with antiphospholipid syndrome have developed abnormal symptoms while having antiphospholipid antibodies that are detectable with blood testing.

Antiphospholipid syndrome is also called phospholipid antibody syndrome. Antiphospholipid syndrome has been referred to as Hughes syndrome in honor of the doctor who first described it.