UNDERSTANDING

To George. Leave an email in the comments and I'll reply. When I got this 20 years ago I was told that what I had was virtually unknown. It took them 12 hours with six doctors in a trauma center to figure out what was wrong with me. They didn't expect me to live, but like you know, we both have lived. I looked today to see if you had replied. The short of breath thing related to the heart really worries people, especially if you are overweight. I think I should make a drawing of what is wrong with me, laminate it like a drivers' license and carry it in my purse. Pictures make more sense to people, since most people aren't even sure that their heart is on the left side (mostly) of the chest. I see a vascular surgeon for my SVCS. I'll look for your email along with some identifying information such as how this was diagnosed or something obscure like that to let me know you are George.

UNDERSTANDING

HOW DO YOU COPE?

Someone asked how I have dealt with the Superior Vena Cava Syndrome. George was his name. Before I answer, I want to say that I started this blog in the hopes that there would one day be an online support group for this condition because it is so rare and so little can be done to help those of us who have survived.

The first thing is that I have great support from my family. This year is my 20th anniversary of survival of SVCS and I could not have done this without their unfailing help.

A second way, and I do not mean to be trite by saying this, but having a positive attitude has been also of great benefit.

I take diuretics and potassium supplements daily. In the summer with the heat this often has to be adjusted.

I don't do aerobic activity, but weight and strength training. I get chest pain from aerobics. I could have said can't do here, but I don't like to feel like this disorder owns me so I say don't.

I sit on the ground to do any activity that requires bending.

I buy blouses one size too big to accommodate my arm size.

I remember who I was and what I was like 20 years ago, but that doesn't count today, because I am today only what I am today - nothing less and nothing more. I can be more tomorrow or this evening, but not right now.

I'm taking Coumadin for the rest of my life and that meant getting my own INR testing machine. It is an INRatio and it is great. Fortunately my insurance company covered it because I had NonHodgkin's Lymphoma at the time and was too sick to make it to get my blood tested. It was actually a savings for the company because they didn't have to pay home health to come out and take my blood for me.

To avoid problems associated with food and blood thinners, I eat in moderation and I eat as much variety as possible.

I eat carefully so that my weight doesn't get too high (a constant struggle if one doesn't do aerobics) and I make sure that it is healthy food. I don't want more diseases.

I have a solid spirituality about me which has given me strength.

I raise my arms up as often as possible to help the fluids drain and to remember to smile. I should sleep on a triangular wedge to raise my head but I have tried all possible options of this and cannot sleep that way.

I take longer to fall asleep because I can't breathe well when I initially lay down.

Most of all I accept this condition as what is now normal for me. There is no way to change it and I prefer it to the alternative (death).

This is sort of like going to the doctor and asking how to lose weight, "What is the best formula?", you ask. The response is always the same, eat less: exercise more! For those of us with SVCS the answer is be thankful you are still alive. The statistics for outliving both cancer and SVCS are stunningly rare and low. Congratulations on being alive to read this!