My first hospitalization happened on December 17th, 1999 when I was 17 years old. My left arm was swollen and I had clots going up to my jugular vein. There was no explanation as to why this happened. The doctors performed an angioplasty and I was sent home on December 27th. This would not be my last Christmas in the hospital. Over the next few months, more clots formed. I had to go back for more angioplasties. They became more difficult to perform and eventually a doctor told my mother than if they had to go through my left arm one more time, they’d have to remove it. I was sent to specialists in Manhattan and by February I was diagnosed with Antiphospholipid Antibody Syndrome.
Antiphospholipid antibody syndrome (APS) is an autoimmune disorder. Autoimmune disorders occur if the body’s immune system makes antibodies that attack and damage the body’s tissues or cells. Antibodies are a type of protein. The immune system usually makes these proteins to defend against infection. In APS, the body makes antibodies that mistakenly attack phospholipids—a type of fat. Phospholipids are found in all living cells and cell membranes, including blood cells and the lining of blood vessels. When antibodies attack phospholipids, they damage cells. This causes unwanted blood clots to form in the body’s arteries and veins. (These are the vessels that carry blood to your heart and body.)
Usually, blood clotting is a normal bodily process. Blood clots help seal small cuts or breaks on blood vessel walls. This prevents you from losing too much blood. In APS, however, too much blood clotting can block blood flow and damage the body’s organs.
The first three or four years of my diagnosis were HARD years. I was admitted into the hospital at least once a month at one point. I dealt with it all. I had deep vein thrombosis (clots in my legs) and pulmonary embolisms (clots in my lungs). The pulmonary embolisms were unlike anything I’ve ever felt before. I hope to never experience that kind of pain ever again. They can be deadly but I survived them – twice. The last one I had caused my lung to hemorrhage. I lost so much blood that I had to be tied down to the bed so the blood still in my system wouldn’t rush away from my heart (that would have caused a heart attack). To this day I deal with a lot of spasms and pains in my lungs due to all the damage that occurred. I had a cyst form in the middle of my knee cap. No doctor would touch it over fear of complications due to my medical condition. The cyst was left untouched for two years and for those two years, I limped. I couldn’t walk properly as my leg could not fully extend or bend (picture always walking around with one sneaker and one high heel). The pain became unbearable though and after those long two years, I had my surgery and many months of physical therapy.
What this all means for my fitness:
1. Because of all the surgeries done to my left arm (the angioplasties), I lost a lot of use of my left bicep. It comes back with exercise though. Thanks to the millions of pushups in those Insanity DVDs, I was able to flex my bicep for the first time in a long time. My left arm is also bigger than my right arm because of all the damaged and restricted veins and arteries.
2. I’m on blood thinners – I’m required to take an injection every single day. Because of this, I have to be careful. I can’t do any type of sport or fitness that could put me at risk for being hit or falling down. I bruise easily and can bleed easily, too.
3. I need to keep going – I’m at my healthiest and my immune system is at its strongest when I take care of myself.