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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

not to know whether I want to know, if knowing wouldn't necesarily save my life

75 replies

BreastmilkDoesAFabLatte · 27/07/2010 10:41

Supposing there's a chance you have a rare heart defect which may cause sudden death. And supposing that, even if said heart defect were diagnosed, there might be nothing that could be done to prevent sudden death.

Would you want to know?

(I'm in this position myself and don't have a clue what to do. Please be gentle...)

OP posts:
OutOutLetItAllOut · 27/07/2010 10:43

tbh i have no idea. but i normally look at things that knowledge is power.
a very good friend of mine dropped dead at the age of 30 from an annuerisim (sp) which was possibly genetic, and his brother, ( twin) and son, had to then be tested. the brother wanted to be done so that they knew the risks, cause when his brother died it was not only horrible loosing him, but it has horrible that there seemed to be no reason.

Goblinchild · 27/07/2010 10:43

might be nothing?
I'd want to know whatever I could, and prepare the best I could. Shutting my mind and humming won't help me or anyone else and won't change the situation.

fanjoforthemammaries7850 · 27/07/2010 10:46

Yes I think I would..because there is a chance you do not have it, and that would set you free to fully enjoy your life without worrying about it all the time!!

AdoraBelleDearhart · 27/07/2010 10:47

I would want to know. That way I could sort things out for the DC's and have a talk with the older ones.

Sorry that you are going through this.

Colliecross · 27/07/2010 10:47

I would want to know as I would either be reassured, or (not great I know) make contingency plans.

Galena · 27/07/2010 10:49

If you know you have the defect, you will live your life far more for the 'now' rather than for the future. However, there is still a possibility you won't die suddenly. If you don't know whether or not you have it, you will still live your life as if you have got it, just in case. However, if you haven't got it, you can relax. You can plan ahead and enjoy your life.

I think I'd prefer to know one way or another, as not knowing, for me, would be worse than knowing bad news.

MistyMooBags · 27/07/2010 10:49

I would want to know. The worry of 'supposing I DO have it' would far outweigh the knowledge that I did (and relief of finding out I didn't), but that's just the way my brain works and I can't speak for you or anyone else!

In the absolute worst case, at least you could (and your family) could be prepared...

thumbwitch · 27/07/2010 10:49

I'd rather know, I think. Because even if there's nothing that can be done about it, there are things you can do to prevent exacerbating it. Plus, if there were a higher-than-average chance that I could drop dead any day, I think it would change my outlook on life - I'd get everything in order, live life to the fullest (except for straining my heart) and make the most of every day.
I'd take heaps more pictures, leave videos for my family - and all this is only if I had the defect.

If I didn't have the defect then it would be such a release!

rubyrubyruby · 27/07/2010 10:49

This reply has been deleted

Message withdrawn at poster's request.

Chil1234 · 27/07/2010 10:49

I would want to know. In the best case scenario, you would have reassurance and peace of mind. In the worst case scenario you would make changes to your life - not least in order not to put yourself or others at greater risk than necessary. Plus, there is always the chance of a transplant or some other treatment further down the track.

booyhoo · 27/07/2010 10:49

yes i would want to know. agree with outout knowledge is power.

Original poster
BreastmilkDoesAFabLatte · 27/07/2010 10:50

OK. So you have all the (intrusive, riaky, frightening) diagnostic tests and yes, you have said heart defect. It might be treatable, but the treatment might kill you, or almost kill you and then fail to prevent you dying anyway.

Then what?

OP posts:
sumum · 27/07/2010 10:51

I would want to know as without knowledge I could do something that could make it worse, for example running a marathon could put extra stress on body and so would avoid things like that.

Also would want to ensure all my affairs were in order in case the worse happened and that the kids were provided for. I know you should do this anyway but it would push me into doing it.

Also it would be a wake up call to live life to the full and not sweat the small stuff. Again something we should all do but often don't.

Hope everything is alright with you. wishing you all the best.

Gigantaur · 27/07/2010 10:52

you should know.

It will be of no real help for you but it will mean that those around you have the chance to be prepared.
it will give you a chance to make sure things are in place so that in the case of your sudden death, those around you know what to do and feel better able to deal with it.

or more importantly, at the moment you might but you migh not have something that could kill you. whether you are aware of it or not, it will be at the back of your mind constantly that you may die. it will effect every decision you make from now on.

by finding out you will know for certain that actually, you are totally healthy.

and if not then time brings gret possibilities. there may be no cure now but in five years, who knows

steamedtreaclesponge · 27/07/2010 10:53

I would definitely want to know, so that if the worst happened at least your family would be prepared. I know someone with something similar (not heart defect but she could die at any moment, or live until she's 60). She has been able to hand over a lot of things to her DH so that she knows he will be able to cope on his own with the children if the worst happens. Previously she dealt with all the paperwork, bills, that sort of thing, and at least now she can relax knowing that he is able to deal with all of that too.

Deliaskis · 27/07/2010 10:54

Wow, really sympathise with you BMDAFL, very difficult situation.

I think I would probably want to know, but for practical reasons:

a) I would want to make sure that someone was there to look after my children

b) I would want to make sure my 'affairs' (i.e. finances, life insurance etc.) were in order and that I had made a will etc. so that I didn't leave DH and family with a big confusing mess

c) I think (but am not totally sure) I would want my family to be able to be aware and prepare for this emotionally, especially kids. It is never easy no matter how much one might be 'expecting' the death of a loved one, but a complete shock can raise a whole load of different issues to a 'semi'-planned/expected one.

d) I am unsure about this one, but I think it would help me to make sure I really do value the important stuff and make each day count (I know that's cheesey, sorry!) and make sure my family knew I loved them etc.

Having said that, you could take positive and pro-active steps to do most of the above things without actually finding out, so the choice is still a difficult one. I think for me, knowing would spur me into action on the practical stuff, as I am a terrible procrastinator.

I guess you need to think about how you might feel if you know you do have this condition, compared to not knowing. From the way you have described it, it sounds like there is a possibility of sudden/early death, but also a very significant possibility that this might never happen and you could live to be 93 and wrinkly, in which case, you will still not really 'know' IYSWIM. Think about this too, as if you find out, you might have two sets of anguish - the knowledge that you have it, and still being completely in the dark about what this might mean for you.

Sorry you're in this situation and hope you make a decision you are happy with.

D

zandy · 27/07/2010 10:54

I used to think I would want to know something like this, but I have a relative with inoperable cancer, and each day he wakes up he is just waiting to die. It is a huge burden on him.

If he didn't know, then he would be able to have days of thinking positively, wondering how long till he was feeling better.

My relative knows he will never feel better, and soon he will be dead. There is no going back once you know.

Think very carefully.

thumbwitch · 27/07/2010 10:55

Ah the treatment is another matter.
If there were equal risk of dying through having or not having the treatment, I'd go with not having the treatment. Especially if it is not likely to actually improve your chances of survival if it doesn't kill you. On the principle that every intervention/procedure carries its own risk.

If OTOH there were a better chance of survival from having the procedure, I'd probably take it. But only if the benefits outweighed the risks.

Fiddledee · 27/07/2010 10:55

You are being very pessimistic which I think is normal in that position. There is a much greater likelihood that you go for the test and they don't find a heart defect and you are fine.

One step at a time do the tests and then wait to decide what to do about the decision.

Treatment improves all the time if you don't know what you have how will know that there is new better/safer treatment.

You are scared, tell the doctor and they will give you some help, there are trained people that can help you make the decision.

thumbwitch · 27/07/2010 10:56

And I would just like to add that I am so sorry you are having to go through this scenario, how awful for you.

Colliecross · 27/07/2010 10:56

I realise this is a frightening situation, but I know a young single parent who died when her child was 7. She had made plans for him , told him as gently as possible, and arranged where and with who he would live.
It was a terrible situation to be in, but without the plans made would have been worse for both of them.

Chil1234 · 27/07/2010 10:56

It's a question of balancing risk. Comparing how great the risk is of the treatment versus how risky the problem is in the first place. Doctors can give you success rates and so forth. Either way you'd still have to know if you had the condition in the first place.

I don't know how old you are but I would have thought there is a lot to be said for undergoing the treatment when you are still comparatively young, strong and well.

mole1 · 27/07/2010 11:00

I think it very much depends on you psychologically. I know someone who had
a cancer diagnosis, is in remission but who can scarcely function through worry. Others in the same situation who are able to get on with their lives without problem and far less worry.

If having a positive diagnosis would make you worry constantly, far more than you are now, then don't do it.

For me personally, if there was a chance of treatment, though dangerous, to cure it, I think I would want to know to decide whether to take that chance.

Deliaskis · 27/07/2010 11:01

BMDAFL re your second post, I would be doing a lot of research on said treatment, checks and balances, risks versus benefits etc. Looking at all the info in some detail before making any decision.

If the condition is a possible sudden/early death, I would probably not have treatment that meant a 'probable' treatment related death, illness, or worsening of condition. This would be on the basis that the odds may well be in favour of living with the condition and not dying early. I suspect though there are very few treatments that are actually more likely to harm than to heal, as they wouldn't be approved treatments, but I would be looking very closely at this and talking to a range of doctors about best recommended action for me personally.

D

Gigantaur · 27/07/2010 11:05

re your second post - my uncle had lynphoma. he was faced with undertaking another round of chemo that the docs themselves said would have to be so agressive that it would either kill the cancer or him.

he had two young children and the gain was better than the risk.
without the treatment he would die anyway. with it there was a chance he would live.

if what you gain is more than what you would lose then there is no gamble