Severe Heart Failure : Hi I took ill on... - British Heart Fou...

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Severe Heart Failure

Shabana1974 profile image
22 Replies

Hi I took ill on 2nd July 2023 with Oxygen levels of 82% so was admitted in hospital for Respiratory investigation and discharged after a few days once normal Oxygen levels. 2 weeks later I noticed my heart dropping to between 29 on raising to 110 so went back to A and E where they arranged the 24hours holter which they suggested very mild VE /STV fast forward to 14th September 2023 I had an Echocadiogram. Then the 15th The heart Failure nurse called me to go to the hospital and see her immediately. Where she broke the devastating news that I have severe Heart Failure Grade 3 Diastolic dysfunction. And dilated left ventricular cavity size and and impaired left ventricular function with global hopokinesia The LVEF was 20% to25%. All though devastating it was also a relief as up until now I was made to feel it was my imagination. I am due to have Angioplasty investigation to find out how my Heart became so damaged, usually this level of damage is due to severe Heart Attack. But blood tests don't show any heart attacks

So currently I am at a loss how I woke up in July thinking I have had flu to discovering I have severe Heart Failure. I am 49.

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Shabana1974 profile image
Shabana1974
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22 Replies
jayjay10000 profile image
jayjay10000

Hi there, iam so sorry to learn about your server heart issues. Iam just dumb struck that your doctors did not take you seriously about your health worries that you have. Iam just lost for words about your situation you are in. I usely have alot to say in matters like yours. There is many of us on here, where we goto the doctors with our health issues and tell them what's been going on and some occasions they don't believe you what you tell them. If you have your own findings which you have done at home for example taking your own HR and giving your doctors your results, they don't like that at all like I found out.i told my doctors that my HR was going down into the low 40's while at rest and they didn't want to know about it. I even recorded my own findings to show them.keep us all Upto date with your heart health. Take care.

Shabana1974 profile image
Shabana1974 in reply tojayjay10000

Will do thank you. My mum died of chronic heart failure in 2014 aged 61. And even with my extensive family history no one was taking it seriously. As a result of my health I have only seen my youngest grandson once since he was born on the 9th September.

jayjay10000 profile image
jayjay10000 in reply toShabana1974

I know how you feel. I have heart issues myself and I know how hard things are when you have worries and have to deal with things on your own iam 48 in December, I constantly think about heart problems and I know that it's not good to think like that but I just can not help it. I don't even like going out on my own any more because I think something is going to happen when iam out, l have family members who don't take things seriously and they always say the wrong thing to me. I have a Grandson like you and he is only 4 months old.

Shabana1974 profile image
Shabana1974 in reply tojayjay10000

I am taking the risk to go see my kids / Grandkids in Leicester tomorrow. All keep fingers crossed its a 2 hour Drive there and 2 hours Back.

Jalia profile image
Jalia

So sorry to read your story. I do hope that now you will get proper treatment.

I understand what you are saying when you mentioned that you were made to feel that it was your imagination. I had similar situation some years ago when I struggled to GPs surgery with severe breathlessness which was dismissed. When I was hardly able to walk more than a few yards I presented at A&E and admitted with heart failure....pulmonary oedema.

Cherrelleford profile image
Cherrelleford

Hey sorry to here you story but at least you have answers now, fingers crossed the angio gives more answers.

I was diagnosed with severe dilated cardiomyopathy 2 years ago the cause is still unknown as to how my heart got as bad as it was. My starting EF was 10-15% and has now raised to 25% with medical therapy.

It's a shock to get news of heart failure but know you are not alone and try take each day at a time, rest when you need to as well

Wishing you all the best x

Fullofheart profile image
Fullofheart

This must have been such a shock. I'm 48 and have mild or asymptomatic (depending who i speak to) heart failure from decades of AF. I know I have struggled with this so I can imagine learning about severe heart failure out of the blue... for you and cherelleford above... must feel like soooo much to take on board. It sounds like they are, finally, taking this seriously, and hopefully with this will come a clear plan for treatment and management. Keep us posted.

Wishing you all the best 🌸

Deejay62 profile image
Deejay62

Hi sorry to hear what you’re going through. Your heart isn’t functioning very well but with medication, healthy eating and some exercise, under your cardiologist guidance and your nurse, it can improve. You’re still young and medical science is improving heart issues all the time so don’t give up. My LVEF is now 23% 5 yrs ago it was at 10%. Originally they didn’t know what caused mine but after they did an angiogram they discovered I have dilated cardiomyopathy. I was aged 42 and now I’m 62. You’re in shock at the moment but keep fighting on and I hope you receive some good care. We are here to support you. You will have all kinds of emotions, that will never go but talking is good counselling is good. Do let us know how you’re getting on. All the best Diane.

Chasserman profile image
Chasserman

If you act responsibly by really looking after your heart through meds, regular exercise that builds stamina, great diet and positive thinking I’m sure there is a good possibility to get your EF back well above 40. Timeline 6to 9 months. Get on an exercise bike for 40mins 5 days a week. Lift some weights and you’ll get your mojo back.

Chas

Shabana1974 profile image
Shabana1974

Thank you all for your kind words, currently I have been told to limit my fluid intake to 1.5 litre maximum 2litre aday and rest. Which makes you feel helpless. I need a good 2.5 to 3 litres fluid a day to prevent Migraines. And while having to rest I cant take action to reduce my weight other than eating less. Which is not difficult but I feel I need exercise to lose weight

Jalia profile image
Jalia in reply toShabana1974

Sorry I'm a bit late commenting but have been off radar!

Do bear in mind that an awful lot of exercising would be necessary to actually lose weight even though it obviously carries other benefits. Just concentrate on lower calories nutritious foods and what exercising you can safely do. I remember reading some time ago in a Family Doctor publication that there was no evidence that the ideal weight for a healthy person is the same as that for a person with heart failure, the ideal being a BMI between 25 and 30. This advice may have been superceded by now though !

Shabana1974 profile image
Shabana1974 in reply toJalia

I have devised a prep meal plan, let's see how it works out

Elsabounre profile image
Elsabounre

tUnfirtunately there are certain subjects that we are not allowed to talk about here..but that causes a lot of HF issues..will just leave that here now..as many know what I am talking about..the sponsers do like us to speak about what is really happen ning wih all these sudden heart Failure patients..myself included..

Stuartc100 profile image
Stuartc100 in reply toElsabounre

Exactly this and i said the same to shabana on another post pound to a penny its the carrot sudden onset HF like that is now all too common and the drs are "baffled"

Shabana1974 profile image
Shabana1974 in reply toStuartc100

My husband was 54 in June 2021, had several mini stroke and the catastrophic stroke on June 23rd. (Apparently a extremely rare form of stroke seen in less than 1% of strokes) now that jibby is no longer on the market. He survived in a fashion but is mostly right paralysed and has Global Aphasia and Apraxia of Speech. (So he can only say a few words. But Fast forward to October 22 he had 10 seizures within 1 hour one of them lasted 25 minutes. (No 7) once he hit number 10 Ambulance guys administered medication to stop them. This happened 5 days post. Jibby

Stuartc100 profile image
Stuartc100 in reply toShabana1974

Yet they still want folk to take it 😪

If you look hard enough there are stories like this, but many are silenced and labelled anti V.

Our builder went blind in one eye they tried to say it was due to him smoking at first, he was 62 at the time, took him 6 months before they admitted it was the carrot as i say he only got £150K for losing his sight in one eye all so he could go on holiday.

Elsabounre profile image
Elsabounre in reply toStuartc100

Very sad that the truth is often hidden..there are other places where many ill effects of the jibby are duscussed and recognized as the culprit...

23Ruthie profile image
23Ruthie

I have to say I feel your frustration and absolute bafflement as to how this was missed . I had a serious mi in Feb 2016 followed by a stroke in July 2016 (I was 45). Up until a year ago everything been managed pretty well . But 12 months ago my symptoms changed completely- breathlessness, extreme fatigue, bloating tummy …. My cardiologist has retired and I feel abandoned. The right ventricle shows stiffness when my heart is under pressure and BNP goes up 1300+ back to 138 the next week. My GP is at a loss what to do with me . I was recommended a book by Prof Angela Maas which has been a revelation and great help - I’m going to save to go private just to speak direct to a cardiac specialist. Good luck with your investigations

Shabana1974 profile image
Shabana1974 in reply to23Ruthie

Well the angioplasty procedure doesn't show any narrowing or blockages. So they are now only managing with medication. I asked could the jabby be the cause they won't agree or disagree

Yumz199725 profile image
Yumz199725 in reply to23Ruthie

Just read your reply and I couldn't help but strongly relate with the fatigue and bloated tummy? Is there anything you do to help with this or is a side effect of medication?? I am going to mention to my consultant at my appointment and see what he thinks is causing it. Do you get pain with the bloating??.

Shabana1974 profile image
Shabana1974 in reply toYumz199725

Foe me I have hired a cleaner once a week to reduce my load this as helped with the fatigue. But doctors have warned about swelling and bloating. But told me to get water tablets from gp if this happens. I have been on omprezole for a longtime so guessing that's reducing bloating empidodes

Yumz199725 profile image
Yumz199725 in reply toShabana1974

Oh wow ok I am a carer so I do all the cleaning and cooking but my dad comes round once a month to do a big clean. Glad it's helped you, I have tried to be put back on water tablets but all I was given was a omperazol but not even on prescription 💔.

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