OT: To test or not to test...what would you do?



N

Nexis

Guest
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" <[email protected]> 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" <[email protected]> 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" <[email protected]> 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" <[email protected]> wrote in message
news:[email protected]...
>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" <[email protected]> wrote in message
news:[email protected]...
>
>
>> 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
 
"Nexis" <[email protected]> hitched up their panties and posted
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

Sounds like a hard decision to make. Speaking for myself; I would want to
know. At least I would know what was happening to me if the disease became
active. I would do all of my research in advance, keep up on the latest
info on the disease and find out what my options were.

Michael
 
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
 
"Margaret Suran" <[email protected]> wrote in message
news:[email protected]...
>
>
> 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.

First, thank you for your kind words, Margaret.

I think that things like Atenelol have the potential to slow it down a little, but
there's no guarantee it works.
The doctors at the Mayo clinic wanted all of us to be tested, as it runs in families,
and especially my sister and I as we were the only other ones born with a heart
murmur. (Both of my brothers were born with a murmur too). I have also had cardiac
arrhythmias from time to time, which is worrisome in and of itself. They aren't sure
there is a connection, from what they've told us. In fact, they're not sure why it
happens. They ask when they do the surgery if they can keep a piece of the heart
muscle they remove to send to pathology for testing.

Again, thank you.

kimberly
 
"Dee Randall" <[email protected]> wrote in message
news:[email protected]...
>
> "Jke" <[email protected]> wrote in message
> news:[email protected]...
>>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

Dee,

The last time I applied, they asked about my parents, but not my siblings, which I
thought odd, but didn't press the issue.

kimberly
 
On Sat 22 Apr 2006 01:57:51p, Thus Spake Zarathustra, or was it Nexis?

> 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?

Yes, I would want to know, and I would do the tests.

I don't much like mystery, surprise, and the unknown about anything, much
less my health.

I suppose it depends on one's general outlook.

--
Wayne Boatwright @¿@¬
_____________________
 
"Nexis" <[email protected]> wrote in message
news:RoA2g.173793$bm6.126679@fed1read04...
>
> "Dee Randall" <[email protected]> wrote in message
> news:[email protected]...
>>
>> "Jke" <[email protected]> wrote in message
>> news:[email protected]...
>>>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
>
> Dee,
>
> The last time I applied, they asked about my parents, but not my siblings,
> which I thought odd, but didn't press the issue.
>
> kimberly
Interestingly, I have had them ask only for my parents' history. OTOH, I
have had them ask about both parents and siblings. Perhaps because I am
older, I don't know.
Insurance and DNA records are a concern, but knowing about one's own health
is paramount and a concern for your children if you have any.
Dee Dee
 
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