I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could find with a
few tests, but is incurable....would you do the tests?

I have 2 brothers that have hypertrophic cardiomyopathy. It's a hereditary condition
that involves a thickening of the heart muscles. Not only do they thicken, which
causes the heart to have to work harder to pump the oxygenated blood, but the cells
are in disarray, which eventually causes the affected segments to become unstable,
causing erratic heart rhythm.

As many of you know, I went to Minnesota a couple months ago for my brother's heart
surgery. At that time the doctor suggested the remaining siblings be tested. At
first, I was intending to do just that...at least, until I began reading up on it.
Basically, what I learned is, if it is going to affect you, it is just simply going
to. There's nothing really preventative you can do, not until it is bad enough to
require treatment.
So given that it wouldn't benefit you to know, and may in fact cause stress, would
you do the test?

Thanks for anyone who responds, and no, I'm not looking for anyone to make my choice
for me...I'd just like to know what others would do.

kimberly

On Sat, 22 Apr 2006 13:57:51 -0700, "Nexis" wrote:

I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could find with a
few tests, but is incurable....would you do the tests?

I have 2 brothers that have hypertrophic cardiomyopathy. It's a hereditary condition
that involves a thickening of the heart muscles. Not only do they thicken, which
causes the heart to have to work harder to pump the oxygenated blood, but the cells
are in disarray, which eventually causes the affected segments to become unstable,
causing erratic heart rhythm.

As many of you know, I went to Minnesota a couple months ago for my brother's heart
surgery. At that time the doctor suggested the remaining siblings be tested. At
first, I was intending to do just that...at least, until I began reading up on it.
Basically, what I learned is, if it is going to affect you, it is just simply going
to. There's nothing really preventative you can do, not until it is bad enough to
require treatment.
So given that it wouldn't benefit you to know, and may in fact cause stress, would
you do the test?

Thanks for anyone who responds, and no, I'm not looking for anyone to make my choice
for me...I'd just like to know what others would do.

Kimberly,

I'd want to know. I wish there'd been a way for me to find out if I
had the evil breast cancer gene. Knowing that I was clear of danger
would have been wonderful.

The other outcome would create a lot of stress for you, but I'll bet
you'd start looking at the world differently and packing more fun into
your life than you do now.

It's a tough choice.

My very best,
Carol
--

Some people are like Slinkies... they don't really have a purpose but
they bring a smile to your face when you push them down the stairs.

Stolen from "traid" on the IRC

On Sat, 22 Apr 2006 13:57:51 -0700, Nexis wrote:

Thanks for anyone who responds, and no, I'm not looking for anyone to make my choice
for me...I'd just like to know what others would do.

I would want to know, I'm a big picture person and not particularly
fatalistic.
--

Ham and eggs.
A day's work for a chicken, a lifetime commitment for a pig.

"Nexis" wrote in message
news:kNw2g.173736$bm6.85264@fed1read04...
I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could
find with a few tests, but is incurable....would you do the tests?

I have 2 brothers that have hypertrophic cardiomyopathy. It's a hereditary
condition that involves a thickening of the heart muscles. Not only do
they thicken, which causes the heart to have to work harder to pump the
oxygenated blood, but the cells are in disarray, which eventually causes
the affected segments to become unstable, causing erratic heart rhythm.

As many of you know, I went to Minnesota a couple months ago for my
brother's heart surgery. At that time the doctor suggested the remaining
siblings be tested. At first, I was intending to do just that...at least,
until I began reading up on it. Basically, what I learned is, if it is
going to affect you, it is just simply going to. There's nothing really
preventative you can do, not until it is bad enough to require treatment.
So given that it wouldn't benefit you to know, and may in fact cause
stress, would you do the test?

Thanks for anyone who responds, and no, I'm not looking for anyone to make
my choice for me...I'd just like to know what others would do.

kimberly
Being able to find out what may affect your health in the future is an
unbelievable accomplishment in medicine.

Being prepared, one can build one's strength mentally, physically and
spirtually.
Yes, I'd have a test, no question.
Dee Dee

"Nexis" wrote in
news:kNw2g.173736$bm6.85264@fed1read04:

I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could
find with a few tests, but is incurable....would you do the tests?

I have 2 brothers that have hypertrophic cardiomyopathy. It's a
hereditary condition that involves a thickening of the heart muscles.
Not only do they thicken, which causes the heart to have to work
harder to pump the oxygenated blood, but the cells are in disarray,
which eventually causes the affected segments to become unstable,
causing erratic heart rhythm.

As many of you know, I went to Minnesota a couple months ago for my
brother's heart surgery. At that time the doctor suggested the
remaining siblings be tested. At first, I was intending to do just
that...at least, until I began reading up on it. Basically, what I
learned is, if it is going to affect you, it is just simply going to.
There's nothing really preventative you can do, not until it is bad
enough to require treatment.
So given that it wouldn't benefit you to know, and may in fact cause
stress, would you do the test?

Thanks for anyone who responds, and no, I'm not looking for anyone to
make my choice for me...I'd just like to know what others would do.

kimberly

Well, unless (assuming you get tested) the doc or other org is going to
give you an automatic alert to new research or procedures that will
enable you to delay onset of the disease, cure or be a guinea pig to cure
the disease that you wouldn't otherwise be able to get (the alert that
is), I would just take the precautions I would as if I had the disease
(i.e. have your affairs in order in case you peel off any minute, but not
randomly go taking treatments if one pops up), skip getting tested but
keep up to date on the research. On the other hand the doctor and/or
researchers may benefit from having to you as a data point as to why or
how people get the disease and getting tested may indirectly benefit you
or your siblings.

Personally I hate going to hospitals etc so I pick the other other hand.

Nexis wrote:
I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could find with a
few tests, but is incurable....would you do the tests?

I have 2 brothers that have hypertrophic cardiomyopathy. It's a hereditary condition
that involves a thickening of the heart muscles. Not only do they thicken, which
causes the heart to have to work harder to pump the oxygenated blood, but the cells
are in disarray, which eventually causes the affected segments to become unstable,
causing erratic heart rhythm.

As many of you know, I went to Minnesota a couple months ago for my brother's heart
surgery. At that time the doctor suggested the remaining siblings be tested. At
first, I was intending to do just that...at least, until I began reading up on it.
Basically, what I learned is, if it is going to affect you, it is just simply going
to. There's nothing really preventative you can do, not until it is bad enough to
require treatment.
So given that it wouldn't benefit you to know, and may in fact cause stress, would
you do the test?

Thanks for anyone who responds, and no, I'm not looking for anyone to make my choice
for me...I'd just like to know what others would do.

kimberly


I am sorry that you find yourself in this terrible quandary. I
believe that I would want to know, but this is easy for me to say, as
I do not have to do it.

Why did the doctor in Minneapolis suggest that you be tested? If you
are found to be a potential hypertrophic cardiomyopathy sufferer, are
you certain that there is no medication available, blood thinners or
something like that, that would be beneficial? I do not mean that
there would be a cure, you said here is none, but there may be
something to slow down the progress or to make you more comfortable.

I am so sorry, Kimberly. Let us know what you decide to do and
whatever it will be, I know it will be the best choice for you.

I wouldn't get the test since there is no prevention for the disease. But I
would keep a closer eye on any possible symptoms.

And I'd always have the option ot change my mind and get the test after all.

In this country, knowing you have a disease like HIV can make it more
difficult to get certain types of insurance (or at least more expensive).
You have to tell the company when you apply for the insurance. If the
disease is rare enough, it won't be asked about explicitly on the
application form. But there might be a general question about health risks.
If you have not been told you have a certain disease, you won't have to tell
them you are at a higher risk than average.

I don't know if that would apply in your situation.

Nexis wrote:
I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could find with a
few tests, but is incurable....would you do the tests?

I have 2 brothers that have hypertrophic cardiomyopathy. ...[snip] ....

Basically, what I learned is, if it is going to affect you, it is just simply going
to. There's nothing really preventative you can do, not until it is bad enough to
require treatment. [snip]

Life is incurable, but we can have some influence over how good our
lives are. Knowledge often helps us improve our lives. I don't see
the downside to having the test. You mention "stress" but you've
already imposed stress on yourself by not knowing whether you may be
predisposed to this disease. I'd think that continuing uncertainty
would be more stressful than knowing one way or the other. -aem

"Jke" wrote in message
...
I wouldn't get the test since there is no prevention for the disease. But I
would keep a closer eye on any possible symptoms.

And I'd always have the option ot change my mind and get the test after
all.

In this country, knowing you have a disease like HIV can make it more
difficult to get certain types of insurance (or at least more expensive).
You have to tell the company when you apply for the insurance. If the
disease is rare enough, it won't be asked about explicitly on the
application form. But there might be a general question about health
risks. If you have not been told you have a certain disease, you won't
have to tell them you are at a higher risk than average.

I don't know if that would apply in your situation.
When you apply for insurance, don't many/most companies ask for family
history? Everytime I go to a new doctor, I'm asked for my family history.
Dee Dee

When you apply for insurance, don't many/most companies ask for family
history?

A few questions, but not in much detail.

Everytime I go to a new doctor, I'm asked for my family history.

I'm not, unless there is a specific reason.They rarely do a full amnio (?)
here. The GP knows a lot about you, and when you are referred to a
specialist MD, the GP wirtes down any relevant info on the referral. From
experience, I know it can be different in other countries.Different medical
cultures, but also different systems.


Dee Dee

"Jke" wrote in message
...


When you apply for insurance, don't many/most companies ask for family
history?

A few questions, but not in much detail.

Everytime I go to a new doctor, I'm asked for my family history.

I'm not, unless there is a specific reason.They rarely do a full amnio (?)
here. The GP knows a lot about you, and when you are referred to a
specialist MD, the GP wirtes down any relevant info on the referral. From
experience, I know it can be different in other countries.Different
medical cultures, but also different systems.


Dee Dee

From my experience they will take a history for numerous tests, as well,
even though your own doctor has prescribed the test.
If you go to the hospital for any procedure, for instance at Georgetown
University Medical Hospital and also at Johns Hopkins, not only will they
take your history once, but you might get 2-4 other interns that will come
in and interview you and take your history.

I'm not saying that all of the facts go into one big data base to be used
or checked in your insurance requests; but I don't think even if it were to
go into a data base, it wouldn't keep me from being upfront with my data,
nor would I decline taking a test for that reason -- who knows, it may save
one's life.
Dee Dee

aem wrote:
Nexis wrote:
I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could find with a
few tests, but is incurable....would you do the tests?

I have 2 brothers that have hypertrophic cardiomyopathy. ...[snip] ....

Basically, what I learned is, if it is going to affect you, it is just simply going
to. There's nothing really preventative you can do, not until it is bad enough to
require treatment. [snip]

Life is incurable, but we can have some influence over how good our
lives are. Knowledge often helps us improve our lives. I don't see
the downside to having the test. You mention "stress" but you've
already imposed stress on yourself by not knowing whether you may be
predisposed to this disease. I'd think that continuing uncertainty
would be more stressful than knowing one way or the other.

Absolutely... proven by the fact that she asked for opinions... it's
always best to know, fore warned is fore armed. New medical
technologies are discovered every day, often times cures for a disease
are discovered while studying another. Don't be a stubborn ass, take
the test.

Right now I have a neighbor who is dying, whom I prepared St. Paddy's
dinner, I'm sure his last. He was told two years ago by Sloan
Kettering in NYC that he may have Leukemia. They told him to have a
bone marrow test. He refused, he didn't want to know. Now two years
later he's in bed with a morphine pump... and NOW he decides to take
the bone marrow test, he goes back to Sloan next week, if he lasts..
His wife is too distrought to think. Everyone knows it's too late.
Had he had the test two years ago they could have helped him, maybe not
cured him but they may have bought him ten more years instead of the
two. Everyone dies, but why not try to live as long as possible, life
is short enough as is, what sense is there in rushing it, especially
out of pure stupididty... there are no atta girls for dumb.

It's a no brainer... if you don't take the test you're a jerk.

Sheldon

Nexis wrote:
I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could find with a
few tests, but is incurable....would you do the tests?

I have 2 brothers that have hypertrophic cardiomyopathy. It's a hereditary condition
that involves a thickening of the heart muscles. Not only do they thicken, which
causes the heart to have to work harder to pump the oxygenated blood, but the cells
are in disarray, which eventually causes the affected segments to become unstable,
causing erratic heart rhythm.

As many of you know, I went to Minnesota a couple months ago for my brother's heart
surgery. At that time the doctor suggested the remaining siblings be tested. At
first, I was intending to do just that...at least, until I began reading up on it.
Basically, what I learned is, if it is going to affect you, it is just simply going
to. There's nothing really preventative you can do, not until it is bad enough to
require treatment.
So given that it wouldn't benefit you to know, and may in fact cause stress, would
you do the test?

Thanks for anyone who responds, and no, I'm not looking for anyone to make my choice
for me...I'd just like to know what others would do.


I would have the test. Knowledge is power. Although there is no cure
for the condition, the timely implantation of a pacemaker to correct
arrhythmia could extend both the quantity and quality of life.

Kathleen

Nexis wrote:

I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you
could find with a few tests, but is incurable....would you do the
tests?

I have 2 brothers that have hypertrophic cardiomyopathy. It's a
hereditary condition that involves a thickening of the heart muscles.
Not only do they thicken, which causes the heart to have to work
harder to pump the oxygenated blood, but the cells are in disarray,
which eventually causes the affected segments to become unstable,
causing erratic heart rhythm.

As many of you know, I went to Minnesota a couple months ago for my
brother's heart surgery. At that time the doctor suggested the
remaining siblings be tested. At first, I was intending to do just
that...at least, until I began reading up on it. Basically, what I
learned is, if it is going to affect you, it is just simply going to.
There's nothing really preventative you can do, not until it is bad
enough to require treatment. So given that it wouldn't benefit you
to know, and may in fact cause stress, would you do the test?

Thanks for anyone who responds, and no, I'm not looking for anyone to
make my choice for me...I'd just like to know what others would do.

Knowing would mean that I could plan better for my future.

--
Dan Goodman
All political parties die at last of swallowing their own lies.
John Arbuthnot (1667-1735), Scottish writer, physician.
Journal http://dsgood.livejournal.com
Clutterers Anonymous unofficial community
http://community.livejournal.com/clutterers_anon/
Decluttering http://decluttering.blogspot.com
Predictions and Politics http://dsgood.blogspot.com
Links http://del.icio.us/dsgood

"Nexis" wrote

I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could
find with a few tests, but is incurable....would you do the tests?
snip

Thanks for anyone who responds, and no, I'm not looking for anyone to make
my choice for me...I'd just like to know what others would do.

kimberly

I'm so sorry to hear the news about your brothers, Kimberly, and can
understand your feelings right now. I would want to have the test - at
present, you can only worry about it; after the test, you would know one way
or the other. With knowledge, we have an amazing ability to cope with
whatever life dishes up.

Dora