Guidance/Help on getting brother to seek medical treatment

• By TinaDiane
• Posted November 5, 2008 at 8:14 pm
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I can relate to your brother. There are times when I refuse to go to the MD for several months, but fortunately, my MD won't prescribe the meds I need to stay alive unless I check in with him. Sometimes, when people are that depressed they are so shut down that they are unable to function. Denial is an easy way to be an ostrich. Antidepressants have helped me a HUGE amount, as have caring medical professionals. He can be comforted by the fact that he can chose to do NOTHING. I often tell myself that.
However, if he choses to go to his MD for MRI/CT/retinal scans ect. he can have MORE CONTROL due to knowledge about what is going on in his body. I think the worst thing about chronic disease like VHL is that we feel HELPLESS and have no control. Checking in with my doc and seeing my repeat MRI/CT scan results, gives me a sense of control, even if I chose to to nothing.
God Bless you and your family.

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• By live
• Posted November 6, 2008 at 3:21 pm
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I travel 10000 miles every 6 months to get screened or get treatment. I have been diagnosed with VHL since I was 17 - that was 20 years ago. I have kids, I have had my eyes, brain and kidneys treated (I have lost sight on one eye and lost one kidney). I need surgery eventually on my other kidney. I have been going to NIH for the past 8 years. There is no point giving up, because the more we show up the better it helps doctors understand this disease so that our kids get better options. This is the reason why I put myself on a plane tp travel the 10000 miles to NIH. Before 2000 kidney tumours were treated with surgery which is still the norm but alternatives have come up like RFA and cryo and now they are trying pills. I volunteered for the RFA and it worked. I am now considering the pill trials as well. Hope this helps.

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• By Caz8886
• Posted November 7, 2008 at 9:25 am
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I can sympathise, my brother and I grew up in the same situation knowing about the disease. I can understand your brother's fatigue about the endless testing. I get it too but I never stop going (neither did my brother). But, here's a part of my story...I had a tumour removed from my left frontal lobe. Because of the location of the tumour, I'm told that I had severe mood swings and a personality change. I don't remember it that way, and convincing me of anything rational was difficult. Even if he's given up, you can't. Just keep at him and maybe one day he'll agree. Be strong. My thoughts are with you.

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• By joyceg98
• Posted November 7, 2008 at 11:46 am
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First, you have to know that he is a grown-up and he is going to make his own decisions. You don't want to lose your own credibility with him, so don't just nag or browbeat him (he will likely listen less).

Personality changes such as you describe may be pointing either to a pheo or a brain tumor. You might start with simply asking him to pee into the infamous jug. That's a harmless test (though annoying), or if he prefers there is a blood test. If a pheo is at work, it can be removed and he can get back to normal. We have a terrific volunteer who has been here / done that and is willing to speak with folks like him.

I got a call recently from a mother in Indiana whose son was doing exactly the same thing. He refused to go for scans, even though his mother and sister were faithfully following the protocol and kept nagging him to go. Then one day he began to have abdominal symptoms. He went to his doctor, and they found kidney cancer, already spread throughout his body. He was gone within two months.

That's the danger. However, confronting someone with that is not always helpful. There is a new study that says that pressing people with stories like that is sometimes counter-productive.

There is a long way between healthy and vegetable. Statistically less than 0.01% of all people with VHL ever get to that stage (less than one in 1000). Without scanning, they are much more likely to be permanently disabled than vegetable. No scanning is a much more risky position than going for scans.

I would suggest simply telling him how much you love him, and how important he is to you and his wife and children. Every major corporation sends their top executives for annual physicals, because they want them to stay healthy and productive. Likewise, you would like to send him for an annual physical because he is the "CEO" of your family and you want to keep him healthy and productive.

In my own opinion, you are not responsible for the choices he makes. You are only responsible for giving him the information and supporting him in whatever decision he makes, whether or not you agree.

I hope that helps a bit. Other folks ... please add your own thoughts, and feel free to disagree.

Best wishes,
Joyce

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• By TinaDiane
• Posted November 7, 2008 at 1:17 pm
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I agree with Joyce 100%
Tina

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