Heartbroken : I am in complete and... - British Heart Fou...

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Heartbroken

Carolx
Carolx

I am in complete and utter shock, as is my whole family.

My darling brother suddenly died 2 weeks ago at the age of 41.

Massive heart attack.

He was diagnosed with cardiomyopathy last year and told by Barts hospital he has a mutant gene that is hereditary.

I suffer from Supra Ventricular Tachycardia.

Which I believe has no connection to his condition.

We have received the autopsy results which are as follows...

Acute pulmonary Oedema,

Congestive cardiac failure,

Left ventricular Diastolic function,

Spondylitis,

Morbid obesity.

Can anyone on here please explain what the first 3 mean please?

Many thanks

Carol

59 Replies
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MichaelJH
MichaelJHHeart Star

Hello, sorry to hear of your sad loss. The left ventricular diastolic function is a measure of the ability of the left ventricle to fill and then pump blood around the body. The measurement is called the EF, ejection fraction. The normal figure is 60 - 65%. As this reduces the heart failure is more severe although people at 30 - 35% sometimes have no symptoms. I suspect your brother had dysfunction, i. e. heart failure. Congestive cardiac failure is when fluid starts accumulating in the organs and pulmonary odema is when it collects in the lungs. I hope this fairly simple explanation is of help.

Carolx
Carolx
in reply to MichaelJH

Michael thank you for taking the time to reply.

Yes that makes sense.

We are hoping it was quick, as there were no signs of him struggling.

He was fishing alone when he died.

No mud on him, no mud on his hands and phone still in his pocket.

Huge shock to us all.

Again I appreciate your reply.

I am so very sorry for your sudden loss, what a terrible time for you and your family!

*Acute pulmonary oedema - fluid in the lungs sufficient to cause oxygen from being circulated to blood and tissues. It is a common complication of congestive heart failure.

*Congestive cardiac failure - another way of saying 'congestive heart failure' where fluid builds up around the heart and interferes with efficient pumping action.

*Left ventricular diastolic function - are you sure the report said 'function' and not 'dysfunction'? Dysfunction is where the ventricle is unable to bring about a rise to a normal end-diastolic volume sufficient to permit the heart to relax quickly.

Again, I am so sorry for your loss.

Carolx
Carolx
in reply to Sunnie2day

Thank you for your reply.

My poor mum emailed the findings to me, she’s 73, so may have got that incorrect about the function/dysfunction part.

What you’re saying makes more sense though.

So basically he didn’t stand a chance did he.

If fluid built up around his heart and filled his lungs it was certain death.

Would this have been a condition which built up over time or could that have happened very suddenly?

Sunnie2day
Sunnie2day
in reply to Carolx

At this point it's probably best to ask that of a professional - perhaps printing out the email and seeing if you can get a ten minute (seems short but if you go in well prepared you'll be amazed at how very much can be accomplished) with your GP or primary care provider for your heart condition to discuss the report - and any potential implication for you heart-wise.

I'm not medically trained so should not even try speaking to anything that might have been done or did it happen suddenly.

You might also consider telephoning to the BHF nurses on the Helpline:

0300 330 3322

ETA: also 0300 330 3311

I've never used them as I have an assigned cardiac nurse through my cardiologist but patients and loved ones who have spoken with the nurses say they are amazing. I know they're busy so it may take a bit for them to ring you back if you're not connected immediately but it would be worth the wait.

Carolx
Carolx
in reply to Sunnie2day

Thank you so much.

You’ve been really helpful.

So sorry to hear of your loss Carolx. I have nothing more to add to what fellow hearties have so brilliantly said. Take care of yourself.

Thank you for your kind words.

Deano_H
Deano_H
in reply to Carolx

So sorry for your loss carol, my thoughts go out to you and yr family

Carolx
Carolx
in reply to Deano_H

Thank you so much 😢

Milkfairy
MilkfairyHeart Star

Carol

I can not add any more to Michael and Sunnie's excellent explanations.

I do however wish to say I am so sorry for your loss. My heart goes out to you and your family and in particular to your mother.

Carolx
Carolx
in reply to Milkfairy

Thank you for your kind words of support.

We are all heartbroken.

We are such a close family and it was such an awful shock.

Just trying to make sense of it and why it happened.

I need to get myself tested for the cardiomyopathy, as it is a hereditary gene.

Fingers crossed I’ll be ok.

I’ve had numerous tests for my SVT, ie ECG, Holter monitor and Echocardiogram, so I’m guessing they would have picked something up.

Waiting on appointment to see cardiologist.

So sorry to hear your news. Such a shock out of the blue.

Be gentle with yourselves. Hearts are very strange things, and can often power through without giving a hint anything is amiss, and then suddenly things go very wrong, very fast.

Hugs xxx

Carolx
Carolx
in reply to Sillyfroggy

Thank you for your message,

Appreciate it very much.

He was on medication for his cardiomyopathy but was feeling fine on the morning he passed.

Went fishing in a very good mood.

Didn’t even get to unpack his fishing gear.

Was found on the riverbank.

All seems very unreal right now.

Sillyfroggy
Sillyfroggy
in reply to Carolx

That’s hard, Carol. All I can say is he was obviously doing what he loved, as it’s only ducks and fishermen enjoy this weather xx

Carolx
Carolx
in reply to Sillyfroggy

I’ve visited the lake where he died.....it is beautiful.

Very picturesque, swans swimming around in pairs, cows and sheep in an adjoining field, a real sense of nature at its finest.

A strange thing happened to him there a few weeks ago.

He was night fishing and was asleep in his bivvy(tent), he had left a small opening via the zip, he woke in the night with something on his face, when he woke properly he discovered it was a robin!!

It had entered through the small opening and it didn’t seem afraid of him when he woke.

It was calm and it then settled on his chest.

Maybe for warmth but I can’t help but think this was a sign 🤷‍♀️

Who knows!

kefalonia1
kefalonia1
in reply to Carolx

Hi, so very sorry for your loss. l had a conversation with a Medium years ago. She said Robins and small white feathers are a sign of a guardian angel or the spirit of a deceased loved one. l'm sure that was a sign, when my Dad was dying a young deer stood outside his bedroom window at the nursing home for 90 minutes in the middle of the day l found great comfort from that. l hope you and your family find some comfort at this terrible time. Love Sue x

Carolx
Carolx
in reply to kefalonia1

Good morning Sue

Thank you for your kind words.

So many lovely people on this site.

It’s very odd about the robin isn’t it. I can’t help but think that was some sort of message.

Doubt we’ll ever know.

Your story about the deer is equally as puzzling but yes very comforting.

Nature is amazing isn’t it.

Found myself staring out the window yesterday hoping to see a robin or some sign.......don’t know what I was hoping for to be honest.

Just a sign I guess 🤷‍♀️

So many different emotions going on inside me right now.

Onwards n upwards.

Each day at a time x

So very sorry for your loss Carolx, I lost my sister when she was 31. It is so hard to accept & understand why these things happen & then we start thinking of "what if". Tough times ahead for you & your family but you will get through it together & your memories of your brother will help. My condolences to you & your family, massive hugs for you all xx

Carolx
Carolx
in reply to Lezzers

Thank you so much.

The funeral is the day after Boxing Day 😢

You are so right about the ‘what ifs’

That’s all we keep doing.

No good is it to keep thinking if only he did this or did that.

It’s happened and no one can change it.

I guess when your time is up it’s up.

Never experienced losing anyone this close.

Absolutely devastated.

I hope you can take some comfort from knowing he was doing something he enjoyed in a beautiful location & he probably wasn't aware of anything being wrong. Yes it is devastating, maybe you could consider having some bereavement counselling xx

I'd like to add my condolences too at such a sad time

Thank you

So sorry for your loss take care

Carolx
Carolx
in reply to Yasyass

Thank you

I am so very sorry for your loss, I pray for peace and comfort for you and all your loved ones!

Carolx
Carolx
in reply to siouxbee19

Thank you

siouxbee19
siouxbee19
in reply to Carolx

I meant to add that I have hypertrophic cardiomyopathy, my Momma had it, and several other family members. It most commonly causes cardiac arrest (heart stopping) due to a fatal arrhythmia, which is different than a heart attack (think blockage stopping blood flow). Because of symptoms I had, and family history, I was definitively gene tested for HCM, and am treated with 2 medications, and I have an implanted defibrillator/pacemaker.

I notified all my immediate family members so they could get tested, as I think knowledge is power, and at least one can choose to be treated if they are found to have cardiomyopathy or some other possibly life threatening cardiac issue.

I have also lost a beloved older brother (not directly related to cardiomyopathy) and I can totally sympathize with you.

I truly am sorry for your loss, please take care of yourself, and may the fond memories of your beloved brother bring you peace and comfort!

Carolx
Carolx
in reply to siouxbee19

So you know the pain I’m going through right now.

So sorry for your loss too. It’s horrendous isn’t it.

Glad your condition is being kept under control with medication.

How were you tested for the cardiomyopathy?

siouxbee19
siouxbee19
in reply to Carolx

Thank you so much! Yes, it is awful, and although I've unfortunately lost lots of loved ones (very large family), you must allow yourself to grieve and give yourself time, be good to yourself. Don't listen to others, everyone is different. And please know you can reach out, there are some truly kind people in this community, unlike other online venues. 🤗♥️

I had numerous tests...Holter monitor, EKG's, Echo's, implanted Reveal monitor, angiogram, EP study (similar to angiogram but trying to find arrhythmias, not blockages), cardiac MRI (which showed hypertrophy), but the gene testing gave the definitive diagnosis. Due to family history and risk of cardiac arrest and my symptoms, I opted for an implanted ICD/pacemaker. Although I was born with HCM, it wasn't diagnosed until I was 40, so I was very lucky.

Since I'm in the U.S., I'm not sure the difference as far as health care, testing, etc... in the U.K. & elsewhere, but obviously our bodies and different conditions work the same, so just sharing my personal experience.

Sending you hugs right now, if I may be so forward, I just feel like you need some! 🤗🙏♥️

Carolx
Carolx
in reply to siouxbee19

Oh you’re not wrong there!

Thank you.

Been awake since 4am!

Can’t stop thinking about the funeral on Friday.......overwhelming panic!

I keep thinking I can’t do it but of course I have to.

I’ve has numerous ecgs, holter monitor 3 times, echocardiogram, exercise testing.

I’m hoping one of these would have picked something up.

They diagnosed SVT and I’m now on 300mg Diltiazem a day.

I’ve had this all my life and just learned to live with it, until about a year ago when I’d had enough.

Still getting palpitations but not as strong or intense and they don’t last as long.

Visited my GP about a month ago and she’s referred me back to cardiologist.

So just waiting now but I think this appointment is needed so much more now.

Now waiting for the shops to open at 8am so I can do the big food shop.....trying to muster up the enthusiasm 😔

So sorry to hear your news.

Carolx
Carolx
in reply to Heythrop51

Thank you

So sorry to hear of the traumatic way you had to receive the news of your brother. The replies you have received are correct. But it is you and your family now who need to recover. Don’t rush into thinking you are alright and give yourselves time to grieve. Be kind to yourself! Allow the Lord to

Comfort you and give you peace. God bless you and your family and friends

Carolx
Carolx
in reply to Oreganway

Thank you for your lovely words of support.

Means a lot.

So sorry but take heed of the robin there is more to life and after than we know .Take Carex

Carolx
Carolx
in reply to Pinnochio

Thank you for your lovely words.

I have to agree, I’m certain this was a sign, not sure what but how very odd this happened.

Never heard anything like it before.

Sunnie2day
Sunnie2day
in reply to Carolx

It's said 'When a robin appears, a loved one is near' and it's taken by those willing to see it as such to mean a loved one who has died is making a quick reassuring visit. The robin visits are said to often take place close to significant dates to the lost loved one.

To some, the presence of a robin also can be one of offering strength and courage to someone in need.

Carol, so sorry to read of your sudden loss. It sounds as if he went peacefully without suffering so try to remember all the good times you shared.

Take care x

Carolx
Carolx
in reply to Supernanu

Thank you.

Yes we have some comfort in knowing he didn’t suffer.

There were no signs of him struggling.

Thank the Lord 🙏🏻

We're so sorry for your loss Carolx. Thinking of you today and always xxx

Carolx
Carolx
in reply to Handel

Thank you so much.

Hi Carol,

So sorry for your brothers passing.

A lot of doctors have said to me it happens more than we like to realise. We don’t put it down to it being heart health. You can feel a bit out of puff or bit under the weather, but put it down to a bit of a virus. We see it as an older generation illness. When I was admitted for Heart Failure I had the top 3. I was shocked it was Hf.

I hope they leave no stone unturned on your health, for your own peace of mind. And don’t be afraid to ask things like, should I not be having an implantable device?

Take care xx

Carolx
Carolx
in reply to Sunshine_Gem

Thank you for your reply.

I will be asking lots of questions when I see cardiologist and of course discussing my brothers condition and cause of death.

Appreciate your advice and support.

So sorry for your loss Carol. x

Carolx
Carolx
in reply to Mirador19

Thank you so much.

My deepest sympathies.

Our eldest daughter past away in May, at the the age of just 28. We still don't know the cause, and I don't expect the inquest to give a definitive reason.

After being an almost life-long atheist, I became a Christian this year.

I hope you find peace. God bless you!

Firstly I’m so very sorry for your loss of your beautiful daughter.

It’s so tragic.

Secondly thank you for your words of support.

Means a lot.

So very sorry to hear about the loss of your brother. Must have been an awful shock. The Robin must have been a sign sent from heaven. My prayers are with you and your family.

Thank you so much.

Just what I’ve been thinking about the robin.

Quite surreal.

My heart goes out to you. My brother, who was only 57, died of cancer 3 weeks ago. He was so loved that there was standing room only in the church. We were very close and an finding it so hard to accept he has gone.

I find it hard to be with other people at the moment so have decided to spend Christmas on my own. My thoughts are with everyone who has lost someone especially at your this time of year.

Carolx
Carolx
in reply to panda22

Oh that is so heartbreaking.

I’m so very sorry to hear your sad news.

I’ve never lost anyone really close, so this is a proper shock to me. It has turned our world upside down.

Never experienced such pain in my heart.

My Mum n Dad were supposed to be going to my other brothers house for Christmas but have decided to cancel and stay at home just the 2 of them.

I however have 5 children (4 now adults) who are coming to me, so I’ve got to carry on with the planning and organising.

Keeping me busy, which is good.

My brother loved Christmas, so I know he’d be saying ‘you must celebrate and have fun’.

I’m dreading the funeral on Friday but at least we can say goodbye and finally lay him to rest.

Christmas was also my brothers favourite time of year. Many family members have asked me to there's for Christmas but I know I would spoil it for them. I just want to be in my own with my memories

Carolx
Carolx
in reply to panda22

Yeah I understand that totally.

If my children weren’t coming, it would definitely be a quiet one for me.

To lose someone any time of year is painful but Christmas time especially.

I’m just taking a day at a time.

I hope you have a peaceful Christmas and find some comfort from your lovely memories.

Thank you. I would like to wish everyone a peaceful Christmas and hope your memories help you to cope

How are you? If that isn’t too daft. Do let us know. The New Year can feel very lonely when you have lost someone. Take care.

Carolx
Carolx
in reply to Speakeazi

Really struggling to come to terms with it.

It’s just so unreal.

First day back at work today.

Needed it, as I was going out of my mind thinking things over n over in my head.

All the ‘what ifs’ and ‘why didn’t he do this’ are not gonna help I know but I can’t help but think them.

My poor sister in law is broken. I feel for her so much.

I have my life. A wonderful partner and amazing children, a job I absolutely love, I drive and I’m very independent.

She depended on my brother so much, as she suffers with depression and anxiety.

She doesn’t drive, doesn’t work.

I’m so afraid she is going to go downhill very quickly.

Thank you for your message.

You are really sweet to think of me and give your support.

Means a lot x

I feel for you, deaths at this time of year are somehow harder. My own brother died very suddenly ten years ago in December, of a heart condition that had not been diagnosed. The shock and pain for all of us were beyond belief. Then my sister's husband died on New Year's day six years ago, from MND.

Christmas and New Year will always be a time of mixed emotions, although it gets less painful each time around.

If you have happy memories of your brother, you must hold onto those and they will help you to get through the worst days.

Sending love to you and yours.

Carolx
Carolx
in reply to Flyingcarpet

Thank you much for your lovely message.

Christmas and new year were horrendous. Saddest time of my life.

My first day back at work today.

Good to be busy but found myself in tears driving there, thinking about him.

It doesn’t feel real.

I have appointment on 27th Jan with my GP to discuss the test for the cardiomyopathy.

Fingers crossed I’m ok, as I’ve had numerous checks over the years due to having SVT.

Need to put my mind at rest though.

So sorry to hear you too have experienced loss. It’s just gut wrenching isn’t it, the pain is unbearable.

You are so kind to take the time to message me.

I am truly grateful x

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