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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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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:

edam · 27/07/2010 11:06

What a horrible situation to be in. It's all very well having an ethical debate or a theoretical debate about whether you'd want to know if you aren't in that position, imagine it's far more difficult and painful if you are.

Are there any peer support groups for people in your situation that could help you explore the ramifications of knowing or not knowing?

I had a tiny taste of this - not to the same extent - when I suddenly started having seizures in my late 20s. I wanted investigations to find the cause and get treatment but at the same time it was ruddy scary, especially when they found something odd about my brain - something that could have killed me when I was a baby, but had resolved itself without leaving any obvious sign until I started having seizures nearly three decades later.

At the time dh and family kept banging on about talking to one of the charities that specialise in this area but I really didn't want to know. Because I didn't want to be 'one of them' i.e. people with this condition. I wanted the doctors to be wrong. And because the only time I'd come across the condition before, it was in connection with people who were severely disabled. I had no idea there were people who weren't affected to that extent. Think I would have been readier to go for peer support, not a charity that raises funds for research, and especially if that peer support included people like me.

Fortunately I can be treated and am able to live an entirely normal life, although pregnancy was a bit more scary as there were possible risks to me and ds.

Not sure any of that helps, but I do sympathise.

AlCrowley · 27/07/2010 11:09

I would want to know.

If you don't find out, you could spend the rest of your life worrying yourself and those close to you about something which potentially doesn't exist.

If the tests came back positive, then that would be hard but as others have said, you could make sure you did as little as possible to exacerbate it, you could make sure you live your life to the fullest, you could prepare your family, make your wishes known for afterwards...

And while there might not be anything they could do - they won't know for sure until you know what it is. It might turn out that they can do something, if not now, then in the future.

So sorry you're having to go through this.

Deliaskis · 27/07/2010 11:13

Also agree with people talking about medical advancements and the possibility of safer/better treatment in the future.

The only thing I would say is, if you do find out, give yourself time to deal with that information on its own before making a decision about having the treatment. We all deal with this kind of news in different ways, and you need to give yourself time to process this without rushing into anything.

edam · 27/07/2010 11:13

Btw, do you have life insurance already? Worth talking to any charity that covers this area about the implications now you know there's a risk and if you go ahead with testing. Sorry to be horribly practical, but it's important. You might be better off putting what you'd have spent on premiums into an ISA.

CaptainNancy · 27/07/2010 11:23

I'm sorry you're going through this. Have you thought of posting a thread inhealth with name of actual condition sopeople living with it can share their experiences?

I have a heart condition, and yes it is scary at first, but knowledge is power. The initial investigations are not risky I promise.

Original poster

BreastmilkDoesAFabLatte · 27/07/2010 11:35

My Goodness. I've rarely heard AIBU in such agreement. And thank you particularly to all those who've shared their personal experiences.

I think the possibility that treatment options may improve in the future is an angle I hadn't considered. But equally, I have already-established heart problems which may need treating sooner, so it's all horrifically complicated... and really a unique situation. Fortunately, I have really excellent medical care, and I trust them to stay up-to-date with everything.

In terms of the practicalities of "getting my affairs in order" - well, there's nothing really I'd need to do. I'm not afraid at all of death but simply of leaving DH and DD (and other loved ones) behind.

And yet, what I'm wanting more than anything else right now (other than a glass of crisp, fruity, dry white ) is a BFP. Is that madness, or some sort of evolutionary response too deep to comprehend?

OP posts:

Original poster

BreastmilkDoesAFabLatte · 27/07/2010 11:52

CN Thanks for the suggestion. But I think I'll wait until I'm feeling less wobbly and alone with this. Whenever I've posted specifics anywhere online before, I always get one or two messages from people saying it happened to an 87 year old great step-uncle, who had lived a whole five years post diagnosis and even managed to go out to play carpet bowls. Such posts, whereas wonderfully intentioned, always make me feel worse - I've no interest in carpet bowling but would quite like to enter the Tour de France. Does that make sense?

OP posts:

edam · 27/07/2010 12:04

Yes, it does make sense, as does the urge for a BFP. I once interviewed a specialist who has a lot of patients with cystic fibrosis. Many of them tend to have children much younger than the national average age because they know rationally they probably don't have as long as the rest of us. There's a very normal human urge to reproduce.

Would it be too painful to put together a memory book for dd, just in case the worst does happen?

thumbwitch · 27/07/2010 12:08

I think your wanting a BFP is down to your wish to be normal, for things to be normal in your life. Giving up that kind of wish could be equated, in your head, with giving up on life - and you're not ready for that.

Not mad or anything else - entirely understandable.

Original poster

BreastmilkDoesAFabLatte · 27/07/2010 12:09

I've already started a memory box... this news has not been a complete surprise and from quite soon after her conception I was aware that

WRT your point about life insurance... thank you. I don't have any, but it's good to know...

OP posts:

edam · 27/07/2010 12:12

Aw, BDAFL, I'm so sorry to have upset you. Do contact one of the big charities - the British Heart Foundation? - and ask about life insurance. But important to have savings and maybe talk to a financial adviser to find out what kind of savings would be best in your circumstances.

sharbie · 27/07/2010 12:13

hmmmmmmmm I don't think I would want to know to be honest.
I have health issues as well and wonder how much extra I can cope with and carry on day to day.I wouldn't want this knowledge hanging over me.
No disrespect at all to the other posters but if you are have health problems already I think you would look at this in a different light.
In theory everyone would say they would want to know but at the sharp end I think things are different.
Really hope things go well and you keep as healthy as possible.

Original poster

BreastmilkDoesAFabLatte · 27/07/2010 12:46

Again, thank you.

I'm off now into work. How I'm going to hold it together, I don't know...

OP posts:

fernie3 · 27/07/2010 13:00

my grandmother and my mother had a heart defect to do with the way the vessels to the heart had formed, my grandmother was affected from her 20s onwards but lived a generally heatlthy life with few side effects until she died aged 87. My mother had her first heart attack aged 29 followed by three more, she was disabled by the effects and unable to live a normal life before dying after her fourth heart attack at the age of 42. There was very little they could do to cure or treat this. I have not asked to be tested although there is a pretty strong possibility that I have a similar problem. I am 26 now and recently ended up in hospital on an ecg etc because my heart suddenly started going crazy and beating at over 160bpm (a problem both my mother and grandmother had). I have been offered a refferal to a cardiologist but I am havign the same thoughts - do I really want to know. It is hard to seperate from my mothers experience what was an effect of the illness and what was an effect from knowing about the illness if that makes sense?

I have no advice but I am leaning towards not wanting to know. I feel so happy in my life now that if I was told about this I dont know how I would carry on living the lovely little life I have - and I know from experience that for my children life would be better with happy memories of not living under this rather than simply having knowledge of it and havign all the memories tinged with that.

on the other hand as many have said - if a treatment was availible the only way I would get it is by knowing! Its really hard you have my sympathies

tyler80 · 27/07/2010 13:07

I'd want to know, even if there was nothing to be done. I'm not even sure it would change the way I live my life but I'd still want to know.

One of my best friends died in her sleep age 20. No reason was found post mortem but genetic tests on her family revealed that she probably had long qt syndrome. I'm thankful for that tiny bit of closure, to have known there was a reason would have helped with a lot of the what if's in those first months when we had no idea of cause of death.

I would want to know, I would want my partner to know, I would want my children to know.

Original poster

BreastmilkDoesAFabLatte · 27/07/2010 18:36

fernie With gentlest respect, I don't think you need a cardiology referral to know what you don't really want to know. But I do understand your reluctance to really find out. I'm sorry you're in this position.

tyler again, I'm sorry.

OP posts:

CaptainNancy · 27/07/2010 20:08

BDAFL- you say you have heart issues already, I cross-posted with you earlier, and couldn't come back... is a BFP really wise?
With my 2nd child I was so much more ill in pg due to heart condition- I was older and much more tired than my 1st pg, and it really put a strain on my body. I have had to accept there will not be a DC3.

purplewednesday · 27/07/2010 20:12

Can I just ask what kind of heart defect do you have? And is there a cardiology nurse specialist you could go and chat to about this?

misdee · 27/07/2010 20:16

can i ask what the condition is?

dh had a rare heart condition. it almost killed him. we dont know exactly what causded it. but he had a heart transplant and is doing well.

because of dh, our three eldest dd had a heart scan done. turned out our dd1 has a heart problem. its being checked out again later this year.

sb6699 · 27/07/2010 20:38

My brother is in a similar position. My Dad as a heart condition that is possibly hereditory and could be passed down through any males.

He is going to find out purely so that he can get things in order if the worst were to happen and also there is a chance he will be given the all clear and will never have to worry about it again.

I really hope it turns out everything is okay for you.

edam · 27/07/2010 21:36

At one point when I was going through diagnosis and complaining about possibly having a life-limiting condition, my mother helpfully remarked 'well, any of us could go under a bus tomorrow'. I think she meant it in a kind, don't worry too much way, but at the time it didn't feel like that at all!

Original poster

BreastmilkDoesAFabLatte · 27/07/2010 22:04

Do you mind if I don't go into the medical specifics online? I'm aware that the possibility of this diagnosis has arisen because a young woman in a similar situation to me died recently, and it was sudden and horrific... and if I say much more, there may be people on here who know her.

But to those who mention a heart transplant... it wouldn't help. Or it would, but it would cause more problems than it solved.

I'm aware yes that now would be a silly time for a BFP. Pregnancy probably wouldn't put me at any increased risk, but I would be horrifically tired... when I was pregnant with DD I could sleep 24/7, but that's no longer an option!

Thanks, though, all of you.

OP posts:

uggmum · 27/07/2010 22:18

I am really sorry to hear this and I hope you get lots of useful advice to help you in your decision.

I have a really close friend who has a heart problem. He was not aware of it and his heart went into an abnormal rhythm and he nearly died. He was rushed to hospital and has had a defibrilater fitted. This will save his life if it happens again.

His disorder is hereditary and his children are being tested. If the tests are positive they will also have preventative treatment.

My friend has had a really difficult time coming to terms with his condition. He contacted the British Heart Foundation and they gave him lots of advice.

www.bhf.org.uk

misdee · 28/07/2010 07:53

btw, dh was at risk of sudden death. he still is.

regarding a BFP. after dh transplant, despite knowing his life will be shorter than most, we had dd4, and are now expecting dc5.

misdee · 28/07/2010 07:55

dh also had an ICD fitted as his heart rate kept soaring to over 200bpm at times.

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