the word terminal

• By joyceg98
• Posted June 3, 2008 at 12:32 pm

Life is terminal. I hate to be the one to break it to you, but none of us is getting out of here alive.

I don't like the word since it implies "hopeless".

VHL is a lifelong challenge. It is not a "terminal" disease, though in some circumstances you may get to a point where a particular aspect (for example metastatic kidney or pancreatic cancer) may seem to have a pretty finite timeline, in which case it might be termed "terminal". But VHL is by no means hopeless, and should not be considered "terminal".

You are quite right that none of us knows for sure how much time we have left. No matter how healthy we are, we could always get hit by a bus tomorrow. So none of us should live with expectations of when we will die or how long we may live.

That's one of the reasons that most doctors have quit making predictions. Even when someone is gravely ill (as with metastatic cancer), they have learned that when you tell someone they have x months to live, they will either become fatalistic and die right on schedule even if their condition is improving, or they will defy the odds and live for another 10 years just to prove the doctor wrong.

Life is fickle that way.

As for the insurance question, insurance actuaries are in the business of gambling -- they calculate the odds that the person applying for insurance will knock off before the premiums have put enough money in the system to pay for the payout. They are hoping you will live to be 100 and they will make lots more money than they will ever need to pay to your heirs.

If according to their calculations, a condition might shorten your life, they either raise the rates or deny the life insurance. But this is not a statement about your personal health, it's a calculation based on what has happened in the past to other people with VHL. And I have to tell you that in the past, people didn't live as long with VHL as they are living today, because we didn't have the knowledge, the screening protocol, or the tools (MRIs and CTs) to find problems early and keep people healthy. So based on the past, their calculations are not so far off. BUT based on today's experience, most people with VHL will probably live about as many years as they would have lived without VHL. They may just experience a few more "time-outs" that most folks, but the older you get, the more you will see that everyone is dealing with something. Nobody has "perfect health". And being watchful, you are less likely to be surprised when something does happen.

You've got the right attitude -- just do the best you can. It's all any of us can do.

Love,
Joyce

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• By MARYWEETMAN
• Posted June 14, 2008 at 4:25 am

Lesley,
I do not think that it is right to refer to VHL as a terminal condition. Some people do die from the kidney cancer associated with VHL. but people also die from kidney cancer which is not part of VHL.

I also know people who have had successful treatment for kidney cancer as part of VHL, and they have then died from something else not associated with VHL many years later.

Therefore VHL should not automatically be regarded as a terminal illness.

Mary.

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• By Louise45
• Posted June 21, 2008 at 8:46 am

Hi there
I think VHL is to live one day at the time.Thats wath me and my 2 kids grown up now.And 1 grandson 3/12 years old that has VHL also 1 granddaughter we dont no yet to young was born on May 6.2008.But we have to take it one day at the time.We will get the baby look at want she get to be 2 years old.Test her for the VHL to i pray she don't but we will has to face that day want it come's to us.Thats life i guess the one we were giving.So just take it as it come.Like i do go for surgurys and think for the best.I'll pray for all off you's to .Take good care now .Go for all your check up thats how you can help your self.Hope the best to you.

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