End stage heart failure.

[mitsy]

My mum is in this stage....had acute decompensation weeks ago and told had weeks to live.She seems to be doing much better now.Obviously that could change in an instant but is there anyone on here that's been in end stage for over 6 months as most literature suggests life span 6-12 months on diagnosis?Thanks

[Lezzers]

Hi Misty

I really am so very sorry to hear about your mum, my husband has HF so I understand how worried you are.

People with end stage HF can live for some months but this depends on how their health is, whether they're still taking their medication, if they have a heart device (ICD, pacemaker, etc) and if this has been turned off

I belong to a dedicated HF support group, (I can post you the details if you'd like me too) someone on there might be able to help/support you more at this time.

Thinking of you & your mum x

[am1875 in reply to Lezzers]

Hi. Sorry to hear about your mum. Did the Dr. discuss the LVAD device, and whether your mum was a candidate. Curious because it’s used often in the US.

[mitsy in reply to am1875]

No they didn't.She is in her 80s and has a number of other comorbidities which I think wouldn't make her a candidate.At the moment she is doing ok,no fluid,more energy etc and we're due a cardio appt Monday so we'll see what they say....

[am1875 in reply to mitsy]

Godspeed!

[Deejay62]

Hi sorry to hear about your mum. 6 yrs ago my heart function was 10% and I had to go to find out about transplant. I had my device updated from a CRT-P to D and my meds changed to heart failure cocktail with entresto, which was a trial drug at the time. A year later I went up to 15%, then last year I had an echo and it went up to 23% after another new medication was added. I have dilated cardiomyopathy (DCM), kidney function of 38% and severe pulmonary hypertension which is progression of the DCM. I am still hopeful and I feel stable in a way. I’m just battling low blood pressure.

We are all different even if we have the same illnesses. I hope she continues to recover with the medications given.

All the best

[DodgyTickerMum]

Hi, so sorry to hear about your Mum. My Dad was diagnosed with Heart Failure 13.5 yrs ago and sadly deemed Palliative in July last year.

He’s still under the local Heart Failure Clinic and attends every couple of weeks, as has extreme oedema in both legs. Unfortunately he was hospitalised last week due to being prescribed a different diuretic, which caused him to lose a dangerous amount of potassium and put him at risk of a cardiac arrest. Fortunately, we recognised the signs (as also happened last year - with another different medication) and called an ambulance. Luckily after several bags of I.V potassium, he was discharged home a couple of days later.

He is very frail now (he’s 83) and has a variety of different ailments in addition to H.F. He’s so stoic and rarely complains. I think we all realise his condition has deteriorated again of late and just cherish the time we’re able to spend with him.

[Murderfan58]

My dad was in end stage heart failure for a year before he died. He came to hate the sight of his own body as his heart was failing. He hated feeling weak and having to rely on my mom and me more . He just want to die and stop mom watching him like a hawk . He was a very proud man and had always looked after others he hated being looked after . He got to weak to shower but washed at the sink with help from my mom but she wasn't allowed to touch from his waist to just below his bottom . He would not let mom help wash his private area or bottom.

Thankfully he had a massive heart attack in his sleep while they slept. Unfortunately my mom died realise he was dead and though he was sleeping so got washed and dressed as usual then went round his side of the bed to wake him for breakfast and even though he was stone cold it didn't register he was dead. She phoned my brother and picked me up and had to explain he had died in his sleep . The doctor came quickly followed by the undertakers .

I striped the bed and cleaned the small amount of urine off the mattress and my brother turned the mattress over . Mom never knew his bladder had voided . I had to lie to my mom which I don't do as I don't lie. But she wanted to know if dead people always looked that way . Dad's face was frozen in massive pain . This was in 2007.

I had already looked after my own husband dieing from cancer so knew what would happen at death . He died aged 47 in 2004. My husband was given 5 weeks to live he on the 3rd,the day after his birthday he died on the 6th.

I have watched 4 people died and anyone who says dieing is beautiful and peaceful. Well that wasn't my experience. It was horrific every time as they where dieing they go skeletal. I had to tell my husband to stop fighting as he couldn't breath on full oxygen. He died a few minutes later at home with me and our children.

My mom lived with me last 18 months of her life she had cancer and dementia and died at my home with me and my children in my home . My mother in law died in hospital. I sat with her 15 hours the last 2 days of her life by her hospital bed. I had only just got home on the second day and the hospital phoned to say she died few minutes after I left.

Sorry if this has upset you but this is my experience of death. The important thing and it's takes time until you do stop forgetting how they died . And to remember then as they where when fit and healthy.

Like I said this is only my personal experience. Not everyone has the same experience.

[Murderfan58]

Didn't realise not died . Sorry for the mistake but it was hard writing about it.

[Hidden]

This all looks familiar but what the cardiac nurse said to us is "Plan for the worst and hope for the best." She explained to us that heart problems are different from cancer, or lung or kidney failure where the clinicians and family pick up signs and everyone knows the person is likely to die soon. With heart problems she said there is little or no knowing and death could be very sudden. It was thus with my husband who was out and about doing things actively and in good spirits when he came home from shopping and had a cardiac arrest and died a few days later in ICU. He had no pain and came out of sedation knowing who I was and smiling and talking away. The staff had ordered lunch and he had a second cardiac arrest as he took a mouthful of lasagne. As other people said we took on board that we did not know when he would die and made sure we treasured each day and did what we could with it.

[Qualipop]

My dad died of prostate and bone cancer in massive pain. His consultant actually came to our house and had him admitted to hospital for the last 3 days to get better pain relief. I too had to tell him to stop fighting, that it was ok to go and I would cope. Despite his pain the end was extremely peaceful. He opened his eyes, looked to the end of the bed, smiled and slipped away. I've had dogs for 60 years so I know well the practicalities of death and they don't worry me. We know we all have to go through it but we just don't know when. I just pray it's peaceful.