Heart Failure can l here positive outcomes please

[ChiChi123]

My partner has just been diagnosed with heart failure 😨 he is taking the news a lot better than l am. I did the worst thing possible and went on Google and everything you read says about 5 year life expectancy. I’ve got myself in such a state about it. Can l hear some positive things please.

[CDreamer]

If the cause of the heart failure is discovered such as being in persistent AF, sometimes when the AF is corrected, the heart failure may also correct itself. Heart failure is a somewhat misleading term and what it actually means is that the heart is not beating as effectively as it should, it doesn’t mean you are going to die within any time frame.

Stop using Google and go to a reliable source such as BHF and their forum for detailed information, or even better, talk to his cardiologist, with his permission of course!

No one can give you reassurance that everything will be OK and with so little information it’s impossible to help you. Much will depend upon age, cause of HF, treatments offered, heart structure etc.

Most of the statistics on HF are made up from Cardio Myopathy and Vascular conditions and the important number to ask is what was the Ejection Fraction.

My husband’s AF and leaky valves caused HR but when the AF was controlled, the Heart Failure resolved.

[ChiChi123 in reply to CDreamer]

Thank you so much for replying l really do appreciate it. The cardiac nurse was in for the first time yesterday and said he had a left bundle block in the bottom chamber. She was really good and l felt so much better but l started Googling afterwards and now wish l didn’t. He is 56 years old. He is already looking so much better after 2 weeks of medications. His EF is just under 40 and she said he has stage 2-3 It’s all so much to take in and I’m sure things will just get better but I’m so anxious about it all.

[BobD Volunteer]

Heart failure is really a misnomer. Medically all it means is that the heart is unable to fullfill all the demands put on it. It doesn't mean a death sentence.

In many cases such as when AF has caused it, HF may be reversed when the AF is treated and controlled.

Repeat after me "GOOGLE CAN DAMAGED MY (mental) HEALTH.

[ChiChi123 in reply to BobD]

I’m repeating it and I’ve made a promise to keep away from it. Thanks so much for replying.

[Ducky2003 in reply to ChiChi123]

Dr Google can be a fickle fella.

[Buffafly]

My father had HF from age 56 but died age 76 from a combo of permanent AF and COPD. And that was without any effective medication at all, in fact some of his asthma meds were bad for his heart. Hope that helps ❤️‍🩹

[ChiChi123 in reply to Buffafly]

Thanks it has helped l appreciate you answering.

[Threecats]

Hi ChiChi,

Please don’t despair! I don’t know anything about your partner’s situation, of course but can recount to you the following tale:

My Mum was hospitalised with heart failure and, like you, I went online and was shocked and upset to read of the 5 year life expectancy and that was on the BHF website too, so a respected source. Mum was put on medication and, 10 years on, she’s now 87, still going strong and as bright as a button. Still keeping me in order too😄

As CDreamer says, it can correct itself if the underlying cause is found. In mum’s case it was undiagnosed AF that she’d had for years, apparently but taken no notice of it, as she thought it was quite normal to hear your heart banging in your ears all night😳 It was only when she was having trouble breathing that she decided to go to the GP and got whisked off to hospital where the heart failure was diagnosed. She’d had AF too long for it to be corrected but, as I say, is doing well on the meds.

Hopefully, now he’s been diagnosed, your partner will receive the appropriate treatment.

All the best to you both going forward.

[ChiChi123 in reply to Threecats]

Thanks so much for telling me about your mum it really has boosted my confidence and I’m so happy to hear she’s doing well. Like your mum mines is 83 and is still the boss 🤣 she had a quadruple heart bypass 23 years ago and is at this moment bleaching my front step as it’s not white enough 😳

[CDreamer in reply to ChiChi123]

Way to go 👍😂

[Threecats]

😂 You may as well go with it - you can’t stop a mum on a mission🤣 Pleased yours is doing well, too x

[ChiChi123 in reply to Threecats]

I know my place hahaha x

[Johnnycyborg]

Hi ChiChi, just a short reply, I was diagnosed with HF 21 years ago and I’m still knocking around, taking my pills and seeing my cardiologist. I’d call that a pretty good outcome and there’s plenty of us around. It’s not a death sentence and I’ve kept up a pretty good quality of life too. Good luck, your fella could last for ages yet

[Eastwick in reply to Johnnycyborg]

Hi Johnnycyborg, do you mind telling me which pills you were put on for your heart failure? I was diagnosed in January and put on fuorosomide but GP just told me to stop them.

[waveylines in reply to Eastwick]

Be wary of a GP telling you to stop taking a medication precribed by the cardiologist! They are not knpwlegeable on such matters. Id ask why of the GP and suggest the GP contacts the cardiologist. In the meantime I would contact the cardiologists secretary and ask to speak to him/ her explaining GP has told you to stop the medication and you are concerned. I say this because a GP in my GP surgery wanted to stop two of my three heart meds because she believed that they were all anticoagulants. They weren't- one was a blood pressure tablet, one was a heart rate tablet and one the anticoagulant. I had to explain to the GP what they all did. She apologised and didnt stop the meds.

[Ducky2003 in reply to waveylines]

My my, that's deeply worrying 😳.

[ChiChi123 in reply to waveylines]

Gp already prescribed an alternative drug. Cardiac Nurse was not amused and immediately wrote out another prescription and wrote to the doctor. Thanks for warning me l will be very wary.

[waveylines in reply to ChiChi123]

Glad you got it sorted anf now the cardiology nurse has written to the GP they should leave you well alone.

[Johnnycyborg in reply to Eastwick]

As waveylines has said, be very wary of GP’s telling you to stop pills. I’ve had a GP tell me twice to reduce my furosemide, I refused and told him that he needed to speak with my cardiologist before suggesting anything so silly and contacted the cardiologist’s secretary myself. Unsurprisingly I’m still on the same dose. I was initially put on furosemide, spironolactone which was stopped by nephrologist after 17 years, candesartan as I tried ramipril but got the dreaded ramipril cough, bisoprolol and digoxin. I also had warfarin due to afib. This lack of knowledge among GP’s seems very common, I’ve now changed GP practices and found much better GO care.

[JOY2THEWORLD49 in reply to Johnnycyborg]

Hi Jonny.

A blood test would have shown a deficieny in some element like Magnesium etc.

Fuseremide is merely a water pill to make you loose water that you have retained.

A horrid drug.

Cheers JOY 73. NZ

[JOY2THEWORLD49 in reply to Eastwick]

HiI think you mean fusermide which is a di=uretic or water pill. It makes one lose water. Given because patient is retaining water.

Problem is the patient loses all the element foods like potassium, sodium, etc and probably B12.

The Dr would have explained this.

Horrid pills actually but Dr doesn't likd fluid building up in around heart or lungs.

Shows as swollen ankles, legs or wrists.

cheri. JOT 73. NZ

[Eastwick in reply to JOY2THEWORLD49]

Thanks very much for your help

[Johnnycyborg in reply to JOY2THEWORLD49]

No I did mean Furosemide which is how it’s spelled, at least it is in the UK. It is a diuretic but diuretics are very important drugs if you have HF, breathing tends to be rather difficult when the chest is full of water, it can indeed lead to an electrolyte imbalance as a side effect but why assume that the original poster’s GP had given that as a reason to stop Furosemide? There’s no indication that that’s the case. I’m pleased for you if you have a GP who will explain their reasoning behind decisions re stopping a medication but not all do and many are clueless and make incorrect assumptions. I certainly learned a lot from both my cardiologist and my nephrologist regarding Furosemide and although you may have had a bad time with that drug it is extremely valuable to others, I don’t believe that you should be judging that way. All the best

[ChiChi123 in reply to Johnnycyborg]

That’s a brilliant outcome well done and here’s to many more happy years. 😁

[Becksagogo]

Hello. I celebrated my 5th anniversary yesterday after being diagnosed with "heart failure". 5 years since having major open heart surgery to repair and replace valves and I had a pacemaker fitted. I won't say its been an easy road and I have had further problems but I am still here and hope to be around to see my grandchildren grow up.A positive frame of mind is needed especially if you are supporting your oh.

I am able to work 2 shifts a week at our BHF Charity shop and lead a reasonably full and active life; something I never thought I would achieve 5 years ago.

[ChiChi123 in reply to Becksagogo]

That’s brilliant! I’m certainly alit more positive after all the great stories. Thanks for replying 😁

[WhitstableWanderer]

Hi Chichi, just to add some perspective.. I was told I'd suffered 'heart failure' at A & E about 4 years ago - quite a shock to someone who had always been reasonably fit and sporty. Apparently it was brought on by an irregular heart rate - A Fib - and my Ejection Fraction was down to 9%, should be about 60%... your partner's just under 40% measurement could be a lot worse. This is a measurement of the hearts efficiency and is usually assessed from an ECG. The cardiologists were planning to fit me with a pacemaker as I was well below the accepted 35% level that PMs are usually considered. However, my EF improved over a 16 day stay in hospital, creeping up to 22% by the time I was discharged. As I was feeling stronger by the day, we agreed to monitor and retest via ECG a few months later. Via exercise, diet and no caffeine and alcohol, I managed to get the EF up to 32% and we all agreed to just monitor. I was on beta blockers, rate and rhythm control meds plus statins for a long time, along with the essential anticoagulants. Three years on, I have weaned myself off all but the anticoagulants, have an EF of 44% and feel absolutely fine. I play golf two or three times weekly, only getting a little breathless on hot days (when I maybe haven't rehydrated properly) and when climbing up steep hills. Life is pretty good and I have posted this in order to give you and others confidence that heart failure isn't a death sentence and A Fib isn't always debilitating. But we are all different, of course.. Don't let him get down, but do encourage him to improve those simple lifestyle things that we can all do - diet, weight, exercise, sleep, alcohol etc, etc

[JOY2THEWORLD49 in reply to WhitstableWanderer]

HiMetroolol makes me breathless!

Finally taken off it to Bisoprolol.

But priv cardiac special said NOT CONTROLLED.

So from Dec 120mg Diltiazem am. and Bisoprolol 2.5mg at night.

CONTROLLED ON CCB!

NO MORE BREATHLESSNESS OR SWEATING .

Find a specialist totally interested in you and your history.

cheers JOY. 73 NZ

Also an improvement in energy when my TVT Johnson 7 Johnson mesh was removed in March. That horrid stuff did damage and so much inflammation the Surgeon said.

[ChiChi123 in reply to WhitstableWanderer]

Thanks for telling me your story and it’s got such a brilliant outcome I’m so happy for you and yes we are both improving our diet and going to be doing more walking. We’re in this together 😄

[custard1]

Hello any heart issue is scary. One area I can point you to is Sanjay Gupta on YouTube (york cardiology) he puts out numerous videos on heart related issues.he is a consultant and has been a massive assistance to do many. I highly recommend checking his videos out.

Try youtube "Sanjay Gupta Heart Failure", also has videos on left bundle branch.

You will find these very helpful and reassuring I'm certain. Best of luck

[ChiChi123 in reply to custard1]

Thanks l will look this up 😄

[Lacontie]

Hi there,My uncle was diagnosed with heart failure over 8 years ago and although it has started to cause vascular dementia( which is gradual) he is still able to do most other things and broadly lives a normal life!

[ChiChi123 in reply to Lacontie]

That’s great news hope he continues to do well 😄

[Bigmark61]

I find some help from these guys too. pumpingmarvellous.org

[Morzine]

Can I ask a basic question? How do you get diagnosed with heart failure, is it cos you’re tired and no energy ?How do you know?

Just thinking that I always blame bisprolol for lack of energy…..it’s just made me think do we blame the tablets and it’s something else…..

Sue

[ChiChi123 in reply to Morzine]

My partner was admitted to hospital with breathing difficulties an echocardiogram showed up his heart failure

[philologus]

It was about ten years ago that I was diagnosed with HF. (I'm 77 years old now.)

I'd been having problems with fatigue, breathing, etc and had made numerous visits to my GP's surgery only to be told that I was OK.

One day I was out walking our two Border Collies in the dunes near the beach and I felt really ill so I tried resting for ten minutes but it didn't improve so I very laboriously and determinedly headed back to where my car was parked. I really didn't think I'd make it.

I drove to my Dr's surgery and the only person available to see me was a trainee Dr.

She talked to me and then did an ECG. She said I was having too many ectopics and my heart was confused.

Off to hospital for tests she said.

They monitored me and said I was having 30,000 + ectopic beats a day and this was causing the problems. After a consultation with a specialist it was decided that my taking Tramadol for more than two years was the cause of the problem so this was stopped.

A month later I was still not well and I had a heart scan.

I was told that I had HF at level 4 and that a specialist would contact me soon. No explanation, advice, no leaflet, nothing!

I was dazed when I left that room because I thought that HF was God's waiting room and I was next. I had to explain all this to my wife who was sitting in the waiting room.

I got home and googled Heart Failure. (google can be your friend.)

My GP should have monitored my Tramadol better and should have recognised that this might be the cause of my problems - but he didn't.

I learned everything I could, took control back, and started taking steps to improve. Iodine helped (but be careful with this as it can cause hyperthyroidism.) Switching from 'ordinary' table salt to using sea salt helped , and so did Earthing myself.

Here we are ten years down the road and I have mild HF (level 1).

I can easily manage 3 miles a day on my Peleton type excersise 'bike. I don't have a problem with ectopics. My resting BP is usually 120/75 and my resting heart rate is around 60bpm. The only heart related medicine I take is 1.25mg Nebivolol a day.

There is light at the end of the tunnel.

All I have to do now is figure out a cure for arthritis. 😜

Best wishes to you both.

George

[GordonEdin in reply to philologus]

Trainees can be good! They have just studied the latest curriculum and are likely to be keen to diagnose your problems. I saw a trainee after I came down with arthritis symptoms and got quickly referred to hospital and got effective treatment for Rheumatoid Arthritis. Pretty sure that my regular GP would have put it down to a virus for quite some time.

[ChiChi123 in reply to philologus]

What a fabulous outcome I’m so happy for you. If you manage to get a cure for arthritis please let me know 😆

[belindalore]

I just recently read a good article that stated walking with Nordic poles (tall poles) is good for heart failure. The poles help to work the upper body and exercise is good for the heart. I had a friend who had heart failure and his Dr told him to exercise. Not running a marathon but something within his tolerance. And walking was what he was asked to do. Only he was lazy and didn't do it like he should have. It's good your husband seems to have a good attitude about it all Now you have to be positive. Don't run out and buy a pair of Nordic poles. If you have good Drs discuss what exercise might be tolerable for him. Maybe it's already been discussed. Just hang in there. You both have many prayers sent your way. 💞

[ChiChi123 in reply to belindalore]

Thanks so much for your advice and kind words l really do appreciate it 😄

[waveylines in reply to belindalore]

Nordic walking exercises most muscles in the body. The great thing aboit it is you can grade it to your level so can go from a beginner all the way up to olympic skiers using it as a part of their training. However of you are not used to walking a good start eould be building walking up with a pedometer.

[JOY2THEWORLD49]

HiMy father had long standing heart failure and lived until 86 years.

He was also a mild diabetic.

The hospital carried out a post-mortem and he died of undiagnosed Lymphoma.

With the right drugs your man will cope.

In 2019 had a stroke showing AF. Still on hospital when the staff did a Carotid scan I showed a shadow on my thyrod. 4 mths later all cancer removed - luckily it had not spread to central lymph node network. 12 lymph nodes removed 2 affected as well as the two lobes of the thyroid.

I'm still here, can talk almost perfectly, dropped face resolved mostly, right hand - I started my knitting, swallowing resolving.

To control AF I was on metroprolol (186 avge day) 47 avge night. Changed to Bisoprolol under heart specialist (156 avge day, 47avge night).

Still uncontrolled so I went to a Northland Mr Brandon Fong who takes a history and is interested.

From Dec controlled on Diltiazem CCB Calcium Channel Blocker 120mg am.

and

2.5 Bisoprolol at pm.

BP 123/72. 77h/rate. Day and 47h/r at night.

125mcg Synthroid (Thoraxin replacement synthetic thyroid hormone). I keep level 2.0--3.0 TSH. Taken under tongue. Early morning without food for 1/2-1hr.

B12 deficiency - I take 1 nugget x 2 days SOLGAR (gold top) Level 400-500.

I take 110mg PRADAXA x twice day.

Statin 10mg if I want to.

Sometimes hospitals will call AF heart failure when it is uncontrolled so it is super important to have right meds for the individiual..AF is caused by Thyroid problems.

Take care.. I had a husband with leukaemia and I know the worry.

Cheers JOY 73 years NZ

[ChiChi123 in reply to JOY2THEWORLD49]

Thanks for replying and l wish you all the best and good health 😁

[rubyr61]

i too have HF ,AF and mecanical mitra valve i was told but i am told mine is moderate with care will be alright

[ChiChi123 in reply to rubyr61]

That’s great news 😁