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"Life with "VHL"

teschtruth
  • By teschtruth
  • Posted April 3, 2009 at 6:10 am · 3 replies
  • Shared with the public
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Yes Living with VHL can be challenging at times. I just try to stay positive, and yes I have even lost some family members from Vhl. I look at it like this, there are many other diseases out there that we could have that are much worse than this one. I feel that if I take care of my self and my kids and do what the doctors ask. Then I think I will live a long life. I've had some major surgeries, but I just go on, life does go on. Don't dwell on the past, just do what you have to do and forget about the rest. Stay strong and positive if not for yourself then for your children and anyone else that looks up to you. I know this is a mean, pain in the rear disease, but just keep going.

Explore topics in this journal entry and replies:

Surgery Brain tumors Pain Memory Diabetes

3 replies

raekel

HI TESCHTRUTH,

WELL SAID. TRUE, THERE ARE OTHER DISEASES THAT ARE WORSE. WHAT WE CAN DO IS LIVE AS NORMAL A LIFE AS POSSIBLE. WE MUST ALSO BE MINDFUL THAT VHL EFFECTS EVERYBODY DIFFERENTLY AND THAT NO TWO PATIENTS ARE ALIKE. IT IS NOT POSSIBLE TO PRE
DICT THE COURSE OF THE DISEASE, SO EACH OF US MUST CARRY ON. YOU SHOULD ALSO BE AWARE THAT VHL WILL SOMETIMES BECOME DISABLING--EITHER TEMPORARILY OR PERMANENTLY. WITH THAT IN MIND, YOU MAY OPT TO PURCHASE A SINGLE STORY, ACCESSIBLE HOUSE, OR TO BUY A HOUSE WITH EASY ACCESS. THIS MAKES SENSE BECAUSE WE ALL EVENTUALLY SLOW DOWN AS WE AGE, WHETHER OR NOT WE HAVE VHL. YOU MIGHT ALSO CONSIDER PURCHASI8NG LONG TERM HEALTH CARE INSURANCE AND ALWAYS BE SURE TO NOT LET YOUR HEALTHCARE INSURANCE LAPSE.

AND IF YOU CAN GET LIFE INSURANCE, NEVER LET THAT LAPSE EITHER. YOU ARE REQUIRED TO REVEAL RESULTS OF ALL DIAGNOSTIC TESTS WHEN APPLYING, YET I AM UNSURE WHETHER OR NOT THIS APPLIES TO THE RESULTS OF GENETIC TESTING.

MY FATHER HAD BRAIN TUMORS REMOVED WHEN HE WAS 18. AND DISCHARGED FROM THE NAVY AS AN 80 PERCENT DISABLED VET IN 1945. HE WAS, NEVERTHELESS, ABLE TO HOLD DOWN A FULL TIME CIVILIAN JOB AT THE LOCAL NAVY BASE WHILE HE RAISED FIVE CHILDREN. I TOO WAS ABLE TO WORK AFTER MY FIRST SURGERY, BUT OPTED FOR DISABILITY RETIREMENT WHEN CYBERKNIFE RADIOSURGERY DID NOT GO WELL.

EVEN THOUGH WE HAVE VHK, WE CAN LIVE FULL PRODUCTIVE LIVES. I'M SURE OTHERS WILL AGREE AND WILL BE WILLING TO SHARE THEIR INSIGHT HERE.

RAEANNE

Beverly2

I have to pipe in...I so agree that a person with VHL needs to have regular care, a good attitude, and a willingness to forget the horrible surgeries that you face.

Yet as the mother of a VHL warrior, I always get very frustrated when people think of this disease as an "easy disease" to fight. When I think of diseases that are worse than VHL, I think of very, very few.

There are three young people (early 20s) that I've read about on this board who have already lost function of their limbs because of spinal tumors.
I'm sure there are many more. That, in my opinion, makes VHL a horrible disease.

I would like to believe that if my son scans regularly and has surgeries when the doctors says to, that he will have a long and healthy life. However it seems that VHL is too unpredictable to say that. Some, it seems, grow old with one or two brain surgeries and a few spots on their kidneys. Others seem to face the wrath of the gene at an early age. I think that this disease is too unpredictable for anyone to believe that regular medical care will keep you healthy well into the retirement years.

And I get very, very frustrated when this disease is compared to other, more managable illnesses. We have three cases of diabetes in our family, and none of those people feel like diabetes is as bad as VHL. None. Yet this misconception, when spread through out the general public, leads to others in our community not understanding the impact of VHL.

My son graduated high school with a girl who had Hodgkins disease in her sophomore year. She is healed and very close to being called "cured", and my son continues the battle, without a cure in sight. While her battle was intense, she is now cured and the disease will someday be a distant memory for her. We don't have that yet. I have a friend who compared her daughter's tic disorder to my son's brain tumors and multiple surgeries, and I can't help but believe that that is due, in part, to the conception that VHL is an easy disease.

I think that VHL should be presented as it is, a horrible insiduous disease that never ends and has no cure.

But I also think that all the VHL warriors in this world should be applauded for the grace and bravery with which they live their lives, for their ability to face the day and make plans, and for their absolute strenth.

teschtruth

Everyone has a right to feel how they want about VHL. You can dwell on your life with "VHL" and feel sorry for yourself and want others around you to do the same. That is just not how I have chosen to live my life, I'm raising my children the same way and I feel that when you have a positive attitude it sure does make life a whole lot happier. That's not to say, that I wouldn't do anything in the world to help find a cure for VHL. I have participated in research and donated tissue every time I have surgery. I try to make as many people aware of VHL as I can, but I do it in a way that I'm comfortable with. We all have to die some day and I'm not going to die a bitter life, because of the one I was dealt. Life is to short, I want to make the best of it. You can't fault someone for looking on the brighter side.

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