The doctor looks at your MRI and says, "You need surgery." Oh, no! Not again! I’m tired, I just can’t go through another one! Familiar words, feelings or thoughts for us with VHL?

We all have choices to make, serious decisions that only the individuals can make for themselves. Many times we’ve heard a loved one say, "Well, that’s it for me, no more surgeries!" We can certainly empathize with that person. You watch them stop going for check-ups and tests though you encourage them to go. There are symptoms, something is wrong, and it needs medical attention. But we can’t make someone go to the doctor if they have decided "no more."

We try to respect and accept our loved one’s right to choose their fate. But is it fair to all of those family members and friends who care so much?

A dear friend who does not have VHL shared her experience with me. She was having chest pains, racing heart, and other signs of a possible heart condition. She did not tell her family what was wrong, but they knew she was ill. Her daughter asked her to see a doctor. She refused, saying she had taken care of sick relations for several years and felt the pain of watching them die. She didn’t want to put her kids through that. Her daughter asked if she had felt that was really the fair thing to do. "But Mom, what if you have a stroke, can’t move, and you don’t die? Is that fair?" My friend thought about the other side of what she felt was the best decision for all, and decided to go to the doctor. The diagnosis was better than she had once feared. Her story really touches on a delicate issue.

We reach a point of giving up sometimes, and decide no more check-ups, tests, or surgeries. "I’m going to take whatever time I have left and enjoy it." Those words came across on the 800 line one day while talking to a VHL patient. But, does that work?

For a moment, let’s take a look at the other side of that decision. Tumors eventually cause deficits if left unattended: loss of vision, inability to walk, talk or even swallow. Are you getting the picture? Death isn’t always the quick end one might expect. You may live much longer than you thought, and be in need of constant medical care.

Von Hippel-Lindau is a manageable disease and one can live a long life if the proper screenings are followed. I’ve lived with VHL for 37 years since my diagnosis. You cannot ignore it. The condition is chronic and it will not go away.

My plan is to face VHL head-on and not ever give up! I hope every one of you can find the strength to do the same.

As printed in the VHL Family Forum 7:2, June 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.

mystory