VEINS ARE GONE

Few people or even doctors realize that when the upper body veins are used up for IV purposes that a port into the inferior vena cava proposes a death sentence. My doctors have been encouraging me to get a port in the IVC so that finding veins is not so difficult. I am forcefully against this. Their proposal is for ease of IV access. When I have to consider it the question I have to ask myself is, "Am I ready to die if this doesn't work out well? That becomes a pretty serious question. I am fighting for my life with a raging immune disease and in the middle of this I have to evaluate the decisions about the future of my life. It is not something I want to have to do, but do it I must. I guess it is pretty important to stress that a blood clot is what gave me SVC so the risk of another blood clot is high.

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!

PLUMBING PROBLEM

I don't read the comments on this blog often, but if you have written asking questions about surgery, I will answer with this comment. What Superior Vena Cava syndrome consists of is a plumbing problem. The blood that should go through the SVC can't, so it has to go around it. That creates a backup of fluid in the upper body. Someone said the swelling was so bad that the arms were weeping. Mine didn't get that bad because it came one slowly and my body had time to adjust to the problem. Adjustment to this plumbing problem means growing new smaller veins to reroute the blood back to the heart. In my situation this means that the process has directed the blood flow to the Inferior Vena Cava. Many people develop larger veins just below the entrance of the SVC so that the lower portion of the SVC continues to work.

It is a hard thing to say, but surgery doesn't pose a very good risk/benefit ratio. I chose to avoid the surgery because the risk of death was so high. In the end, I think this was a good choice because my body did eventually grow new veins. It has been a long process, but I'm glad that I was a patient with patience.

PUT IT ON THE BACK BURNER

People ask me how I deal with this phenomenon called Superior Vena Cava Syndrome (SVC). Some days I don't. Most days I just put it on the back burner of my life. Sometimes it is so on the back burner that I forget to tend to it and I get myself into trouble.

I'm not supposed to do anything that might scratch my arms because they are so swollen and the risk of infection is high. I get out into the garden (sitting and sometimes lying on it to work) and get scratched without realizing it until I come in to clean up. It just doesn't occur to me that I might have done something dangerous. Other times I forget to not bend over very long and I come close to passing out. We live on a steep hillside, so passing out is not a good idea.

The thing I think I will never quite get used to is the constant sense of pressure in my chest and neck and the pain that it creates. Sometimes I make myself forget about the pain and to think of it as the way everybody feels, but it is always there.

What I think about this illness that is like so many others is that we GET to continue to live despite the illness. I try to never lose track of that glorious fact that I am alive today.

SWELLING

Lying flat is one of the hardest things I do. I really can't sleep sitting up or propped up. The truth is that I don't get much rest because of a sleep disorder, but that is another area. The blood pooling into my upper body and not having gravity to feed it back makes me wake up with a swollen head - literally! My arms and hands are also quite swollen in the morning. After I'm up for a while this goes down some, but recently my arms have been more swollen. By arms, I'm really talking about my upper arm where there is the most venous engorgement. One arm is quite a bit larger than the other and this makes wearing clothes difficult. Nothing fits my big arms, so I am always in a top about one size too big for me. In the summer I just wear tank tops even though my arms are so big. It is more comfortable that way.

I keep wondering how other people deal with the problems involving swelling. I do take diuretics, but they don't help all of it. As the doctors say, "the diuretics are just palliative". We live with a difficult problem, but it sure beats the alternative.

SUPERIOR VENA CAVA SYNDROME - GETTING THE DOCTORS TO UNDERSTAND

So many of the folks with Superior Vena Cava Syndrome have trouble expressing to their doctors what it is like to feel the way they do. In the 18 years that I have lived with this I've learned about a lot of responses. I think the most common is showing up at the emergency room and telling them that you have superior vena cava syndrome and they ask what it is. I tell them and they look at me like I am in the loony bin. They leave the room (my husband and I snicker because we know what is going to happen) and return a bit later having looked it up on the Internet. Then they treat me like a person who knows something about her body. It is almost always the same.

Because of the difficulty of venous access with this problem I have finally had my doctor write a letter that indicates what order the veins should be tried. This eliminates the need for me to make hard decisions when I am not well. I carry the letter with me along with a list of my medications and medication allergies.

Doctors don't understand the subtle symptoms of SVC. If I bend over for just a short time all of my blood goes to my head. When I stand up the pressure from this blood on my optic nerve causes me to go blind for a little bit. I'm guessing that there isn't a specialist out there who knows about this phenomenon. The doctors just know it is a "plumbing problem" in the venous system.

I'm glad to be alive. It sure beats the alternative. I hope that my writing is beneficial to some soul that is searching for answers to this rare disorder.