Heart Failure

[Kayjay2018]

My mum was admitted to hospital via A&e at the end of last week after being noticeably unwell since Christmas. She had a cough, painful chest and breathlessness that didn't get better after 2 bouts of antibiotics. Her liver function tests were all over the place too. Last weekend she was getting worse and saw OOH GP who gave her an inhaler and codeine. Fast forward to GP visit and ECG followed by a GP call on Thursday who sent her to hospital. They initially thought she had had a heart attack possibly weeks or months ago, now seem to think it's just heart failure. Her heart is operating at 25%. She is in the coronary care unit at her local hospital and after declining all weekend seems a little brighter today (she was told yesterday that if she didn't stop moving around and stressing her heart - by going to the bathroom herself- she wouldn't be here much longer).

I have zero experience of heart failure and my parents are not the sort to ask too many questions of the medical staff. My understanding from reading articles on BHF she is really sick, I don't know whether with medication she can improve things or how long we may have her around. She is only 72 and until the end of last year was doing ok (lupus in remission) type 2 diabetes under control. She has lost quite a lot of weight and my lovely strong mum seems so much more frail and vulnerable.

Does anyone have any experience of someone in the same kind of position? My dad is seeing the consultant tomorrow so has a chance to ask questions. And if I'm honest I'd like an idea of what may be to come. Thanks

It really varies so no one will be able to give you an accurate idea of your mums prognosis but I'll tell you about my experience with my dad just as a reference point.

He was only early 50s when he went into hospital for some checks as he thought he had lung cancer. They hooked him up to an ECG for a routine baseline and he was having a heart attack at that moment.

Tests showed less than 25% function and the next day he had a quadruple bypass operation.

He recovered well initially but heart function was never great and he was deemed to still be in heart failure. He lasted 8 years after the bypass, for most of that he lived a really full and active life, had to have a pacemaker fitted around year 4 and was on daily medications for blood pressure and other linked conditions.

The last year was tough as his heart failure resulted in fluid on the lungs and for his kidneys to fail so he was having daily dialysis and required a catheter.

@FatAgainItsLettuceTime thank you for sharing and I'm sorry this happened to your dad. They though she may have had a heart attack around new year when she experienced some chest tightness but they seem to be less sure now.

My mum had a full body CT and a heart ultrasound (maybe more things but I'm only going on what she has said) and no mention so far of operations. It's awful not knowing and not being able to ask questions. My DH had a stroke last July and I was able to be in hospital and ask questions or talk with the doctor about what was going on. I think my parents are trying to shield my brother and I (even though im 41!) and actually we would rather know how it is so we can process it and help as best we can

Hi. I'm sorry to hear about your mum. The very name "heart failure" is scary, and you have every reason to worry. Survival statistics for heart failure aren't great.

However, statistics look at large groups of people, not at individuals, and the main thing is that your mum is in hospital, and has got the diagnosis. This means that she will be able to get treatment; so please don't feel that it's all too gloomy.

The vast majority of people with heart failure will be treated with a "cocktail" of several tablets. It can take a while to get the balance of the different tablets right, but with the right balance for the right person, treatment can improve life expectancy and (maybe even more important), improve symptoms - sometimes quite dramatically.

What can you and your family (and your mum!) do to help? ---- Get her to take the treatment that she's prescribed. Stop smoking (if she smokes), keep alcohol down to a sensible minimum (if she drinks). She may need to limit her fluid intake - be guided by what the specialist and GP advise about this. She should try to limit her salt intake. It will do no harm at all to really, really work hard at sticking to her diabetic diet to try to keep her blood sugars under control too.

These are general points that you might already have read on the BHF website. None of us here can be specific about your mum. But please try not to assume the worst ---- treatment is possible and can help a lot.

@mauvish thank you. She is definitely taking her medicine (she just wasn't listening to the rest piece) lucky she doesn't smoke or drink at all and they eat an ok diet (my dads is probably worse than my mums) she didn't exercise much before this though. They have her recording all her fluid on a little chart at the moment so she is on that (and she did used to drink quite a bit of tea and decaf coffee. She isn't even allowed at the moment as shower as that would put too much stress on her heart so it feels like coming home is miles away. It feels so out of the blue. She has had a stupid cough for years and had loads of checks on her chest and lungs last year and they were treating it as post nasal drip before this all seems to have come to a head. I had the dreaded test before 7 this morning from my dad saying we needed to see her today (haven't seen her for a month as she refused to have us round while Ill) as they both wanted us to see her in case she was still on a downhill spiral.

My mother in laws partner (she only knew him a few years) died from heart failure in June after a rapid decline this time last year. We live some distance away and knew nothing of his health issues till near the end. I suppose that is in the back of my mind that she is worse than he was in Dec 21. The diuretics seem to be working to remove fluid and another positive is that she held a conversation for over 30 mins and she couldn't manage 5 mins last week when I called

How is your mum now? Praying she's OK. My mum is between stages 3 and 4 of heart failure, that's the only info I can get from her. My mum is very old school and doesn't like any fuss. She gets very breathless when moving around, particularly going upstairs. Her chest feels painful so she has to stop even light activity. She has a build up of fluid on her lungs. Medication helps a lot with all this but I can see she's worsening which is scary. The plan is for a stairlift and oxygen at home. She needs a carer really but won't accept that. She's very strong willed and gets on with things but pushes herself too hard at times..

I hope your mum is OK and home now. If you want to talk about this I'm around.

As prev poster has said very variable and not linear also depends on the reason e.g structural problems etc. Very sorry you are all going through a very stressful time. Sounds like she certainly has alot of rehab to do and adjusting to a different way of life but once everything is optimised people often do well albeit not how they were before.

If your mum consents then you can have your own conversation with the hospital team or she should get a heart failure nurse specialist either from the acute team or community teams once discharged home who can also support/educate/answer these questions.

Sending positive thoughts your way

I'm sorry I didn't come back to post an update. She has been home a few months now and her local gp seems to have her on a good balance of medication. She wasnt sleeping at the beginning and they tried sleeping tablets which didn't really work, she is now on an anti depressant and it's like I have my mum back. She wasnt hugely active before this and she is mostly back to how she was before. They have altered the diuretics a few times as she had very low blood pressure. She is getting more confident about my dad leaving her at home while he goes out fishing and is managing some walks near home.

The hospital advised that the % the heart is working at is almost not relevant. Their aim is to get people back to the quality of life they had before and that people with really really low heart function can have less symptoms than someone with a higher one, it's all very down to the individual.

It is something she will have to live with, I think the shock etc has worn off with her now and she is seeing life can be ok again

@SlB09 thank you for the positive thoughts. My mum is lucky she has my dad around as chauffeur and he is attending appointments with her and I get debriefs from him

@existentialpain if your mum would allow it may be worth you attending an appointment with her? My mum had some worse I no early in and they needed to tweak the medicine till they get the correct balance. The diuretics should help with the fluid, maybe they need a review? Make sure you look into any benefits she is entitled to and things like a blue badge if she is struggling to walk far, they might help with things just a little. I'm sorry you are going through it x

Heart failure is when the heart isn't pumping efficiently.

Treatment depends on the cause.

Digoxin is often used as this makes the ventricular contraction stronger.

If the cause is a blocked coronary artery then a stent or bypass can be used but if it has a different cause then obviously that doesn't work. Eg the heart muscle can become thickened and a bypass will not change that.

The ultrasound (echo) shows the structure of the heart and is also used to measure the 'ejection fraction' which is probably where you have got the 25% from.

25% isn't as bad as it seems, this is the amount of blood ejected by the left ventricle when the heart contracts, normal is 55% so the 25% is more like it is working at 1/2 its normal value.

Sorry I have just seen your update. Glad things are going well but I'm leaving my original answer in case it helps someone else.

@sashh yes you are right with the 25% ejection fraction. They were unable to find a cause and there is a query over whether she had a heart attack at some point and was unaware, she seems in a better place physically and mentally which I am so very grateful for.

The BHF is a good place for info www.bhf.org.uk/informationsupport/conditions/heart-failure and the leaflet she was discharged with was a BHF one.

@SlB09
My understanding (from memory) is that unlike stages of cancer, it is possible to move from day stage 3 back to stage 2 or 1 with treatment (although you may want to check that with a doctor)

@Kayjay2018 I'm glad she is on the mend.

When I first started to work in cardiology and I was learning to read ECGs there were 4 stages of MI (AKA a heart attack) and you could see whether the MI was happening now or a few days ago or a few weeks.

Then Streptokinase came on to the scene, closely followed by other clot busters, so no one learns about the stages because it doesn't often happen that someone presents at hospital a few days or weeks after an MI.

I also remember stents first making their appearance.

I really am a dinosaur.