How Did I Find Out

I had felt like somebody was strangling me for about six months. My doctor felt it must be stress. It was especially difficult if I bent at the waist to do anything, such as changing sheets on the bed, or looking into the lower shelf of the refrigerator. I began noticing spider-like veins on my abdomen and asked my doctor about it, too. He hadn't seen anything like it before.

One Sunday morning I woke up feeling terrible. My neck had a large lump in it, it was hard to breathe and hard to swallow, I had a headache, and felt like something terrible was happening. My husband was a choir director and HAD to be at church, so he dropped me off at the emergency room promising to return as soon as the choir had sung. The Emergency Room doctor asked me all kinds of personal questions such as how I was getting along with my husband, if I was depressed, and finally said that the diagnosis was depression with flu-like symptoms, told me to go home and rest and get some counselling. Of note is the fact that I am female! Four hours later I was back at the ER. This time I was rushed to the trauma room and soon more doctors and nurses were around me than I could count. My neck was hugely swollen, I couldn't breathe, I had chest pain and the small veins on my upper body had begun to burst, leaving tiny little bruises. A CT scan was performed and it was determined that I had a massive amount of fluid on the right lung which was then drained. I began to breathe a little easier. After 12 hours of intensive testing it was determined that I had about a 15 inch blood clot to both subclavian veins and the entire superior vena cava. I was immediately put on heparin and complete bed rest. Movement was discouraged, as it might break a piece of the clot loose. I was not expected to live.

Three years earlier I had a Porta Cath inserted for better venous access due to long term illness. My veins were next to inaccessable and the doctors felt this would be a better solution with little risk. I later read that the model of catheter that I had was recalled.

This happened 16 years ago and I am happy for each day that I am alive. A few of the side effects of this syndrome include being flushed all the time, having a large neck (I'm a petite woman), having very large upper arms and prominent veins visible on my arms and upper chest. I can no longer bend over without the risk of passing out. Timing is part of my routine. I count to 15 if I need to bend over. Anything longer and, as we say in the family, the "lights" go out, meaning that when I stand back up I cannot see. I have constant shortness of breath, especially when talking or moving about. Sitting quietly is my most comfortable activity. I also have constant chest pain and difficulty sleeping because of the shortness of breath. Medical textbooks don't talk about these things. They just give a short description of the condition, indicate that most people with this problem also have cancer and don't go on to describe what chronic superior vena cava syndrome is like. It can be incapacitating if you let it.

I have chosen to be happy for each an every day that I am alive and to treat it like a gift. Yes, I have fatigue from the problem, but that just means that I have to allow a little longer to do things. Yes, I get depressed from the symptoms, but I still pick myself up and start each day anew.

Aerobic exercise has proven impossible for me due to the shortness of breath and chest pain, as well as the vascular pooling that occurs with aerobics. Quite simply, blood flows to the upper body, gets stuck there until the small blood vessel network can drain the blood back to the heart. Anything more than a slow walk creates this problem. So.....I lift weights and do slow Pilates exercises as well as Yoga. Anything that keeps my head upright and my muscles working slowly is good. I highly recommend this type of exercise. I do most of it on the floor. I also use a large ball to do some of my workout. My mantra is "Keep Moving!".

Quite obviously, if there isn't aerobic exercise, I must be very careful about diet. I eat small portions of very healthy food. I allow myself as much vegetables and fruit as I want, comsume dairy products three times a day and eat a high bulk breakfast. I drink a lot of water, but need to take diuretics to keep that liquid from pooling in my tissues, thus causing more pain. It is a delicate balance.

I will be taking Coumadin (Warfarin) which is more commonly known as rat poison for the rest of my life.

If you have this condition and have a question, please post it on my blog. I would love to make contact with somebody else in this world who has lived with this condition for a long time.