Sunday, January 29, 2012

Cleaning up the dictionary

There are a few words in Vasculitis vocabulary that need to be removed completely or to have their definitions solidified within the community so that everyone knows what everyone else is talking about. Patients need to be able to understand what a doctor means when they say a certain thing and doctors need to decide what language they are going to use when it comes to describing aspects of these diseases to each other.

One of the first ones that needs to go completely and as far as I know is Wegener's Specific is the term limited. When a doctor tells a patient that they have limited Wegener's it usually means that they have no kidney involvement. The problem here is that a lot of doctors also seem to feel that, if there is no kidney involvement, then the disease is not serious or not as life threatening as a disease path that does effect the kidneys. This is in no way true. It is possible to live with kidney damage through dialysis and as far as I am aware, a kidney transplant is a lot easier than, say, a lung transplant.

Just because the disease is not active in the kidneys does not mean it is not life threatening. Someone on the Vasculitis Boards put it this way, "We don't tell someone that they have limited cancer just because it hasn't spread to anywhere other than the breast, or the colon, or the skin." Limited should not ever be used.

Another term that needs to be determined as to what exactly it means is remission. It appears that each doctor has a different idea about when a person goes into "remission". Other doctors, and these are the ones that I tend to agree with, don't even use the term remission because it gives off the idea that the patient is somehow cured of this disease. I have a personal example of this. My grandmother has a hard time understanding that what I have will never really go away. It will always be there. For the longest time she would ask me why I didn't just go to the hospital and get some strong antibiotics, even if I had to stay there for a while. Finally, I got her to understand that being in the hospital was not what I needed. Now that I am getting back good blood work finally she now feels that I have been cured and am "in remission".

I prefer instead to use the term quiet. This conveys the idea that the disease is not active at this time, but leaves open the very likely possibility that it will become active again.

Along these same lines, doctors need to decide what the difference between a flare-up and a relapse are. Some people have said that their doctors say a flare-up is when there is minor disease activity while a relapse is severe. Others use the two terms interchangeably.

It is hard enough trying to find doctors to treat vaculitis, but then if you happen to go to more than one doctor and they each use different terminology then the patient can become confused about how their illness is responding and how they are physically doing.