CHEERS TO YOU ALL

I have just read some of the comments from my first posting. I have been unable to access my blog since the change in user ID happened and just finally got into it today. My words to all of you is that this disease is very very difficult in the beginning. Sit upright all you can. Your doctor should have you on diuretics as well as Potassium supplements (diuretics deplete potassium). You will always have swelling. I have had for 18 years. You will always be a bit short of breath. You may always have chest pain. I have just gotten used to it and been thankful that I am still alive. We are the rare ones. Become assertive in your own care and find out as much as you can about your condition.

I never had the possibility for a stent as my Superior Vena Cava was completely occluded and scarred. All of my blood return goes through collateral veins, down through my liver and back through the Inferior Vena Cava. My condition is worst cast scenario, but I lived. So can you.

Breathe as deep as you can, exercise daily even if it is just moving your legs and eat healthy foods. Keep a positive attitude and try to regard this as an inconvenience in your life. Then you can get on with your real life.

If any of you folks want to contact me, create your own blog and I can respond to your comments. Go to blogspot.com and the creation of a blog is rather simple. Best to you all.

LISTEN, PEOPLE! IT'S CALLED SUPERIOR VENA CAVA SYNDROME

I'm a pretty easy going kind of person. I don't anger or cry easily. I view the medical community as people who can help me and my job in that community as being one who makes life on the medical community easy. I recently needed a medical procedure which required an IV. As most Superior Vena Cava patients know, most of us don't have many veins and I am now down to one in my upper torso. I told this to the IV nurse, indicated exactly the placement of that vein and she ignored all of the help I could give her. To shorten a long story I ended up in sterile draping in a Cath Lab having a procedure done that I was not sure was okay for my condition or for that matter, with my doctor. I left in tears. I just wish that medical personnel could be educated about this rather rare condition and learn to listen. Perhaps if everybody that had Superior Vena Cava Syndrome could unite we could get some press so that some education could happen.

I hope that if you are reading this and have Superior Vena Cava Syndrome that you would respond. I would love to connect with someone like me, as I have never met anyone with this disease.