Who is the most important person in the medical management of a person with VHL? I asked this question while in the hospital for removal of my adrenal gland. The answers were usually the same. Doctors thought the doctors were. Nurses thought nurses were. Not so.
The most important person is YOU.
You need a primary doctor you have confidence in -- a doctor that knows about von Hippel-Lindau syndrome or is willing to learn about VHL. It is important to have as a gatekeeper a doctor willing to admit that he or she does not know all the answers and who will refer you to a doctor more knowledgeable in the area of concern.
Nurses who care are important. I had nurses who cared while in the intensive care unit. Knowing she cared minimized my anger at the clumsiness of one nurse who kept bumping into my bed.
Other hospital staff personnel are important if they give the feeling of concern and empathy. Family and friends are important for the support they give to the person with VHL. You are the most important person in the medical management of your VHL treatment for a variety of reasons.
Nobody else can tell you how you are feeling. For example, I was the only person who could describe the symptoms of back pain and throbbing in my back invoked by even minimal exercise. Accurate descriptions can help the doctor pinpoint the source.
Although the doctor can detect and identify serious problems like high blood pressure, prescribe medications, and make referrals; it is up to you to follow the doctor’s advice.
There are many unresolved feelings when you learn you have VHL and what it could mean to you. I needed to work though my feelings about an unknown future with VHL.
You need to be your own advocate and take responsibility for learning about the disease and how you can help yourself. I had to be responsible for asking any questions I had and not be afraid of asking what seemed like dumb questions. The only dumb question is the question you don’t ask.
Because you are involved with other family members, you need to be aware and deal with their emotional feelings. Their support is important to your own emotional and physical health.
Regardless of what your medical future is, you need to decide for yourself what gives you peace of mind, a sense of purpose for your life, and how to keep control of your life.
Although other people such as family members, friends, medical personnel, ministers and other professionals are important, the person with VHL is the only one who must deal with all aspects in the treatment of the syndrome and of that individual. Quality of Life and Peace of Mind are slightly different for each person, and only YOU will know how to find Peace of Mind and Quality of Life for yourself.
As printed in the VHL Family Forum 7:1, March 1999. For permission to reprint, please contact VHL Family Alliance, info@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.
