I hate the term HF as it is not Failure but an Insufficiency and should be called HI!
Anyway I was talking to a fairly elderly gentleman a few days ago. He had a major event at the age of 58 which left him with part of the heart muscle dead and a much reduced EF. These days he takes an array of medication each day (he says he has never questioned his cardiologist about them). He can still manage the half mile to the local Tesco Metro and paper shop. How old is he? 84 years young! He is so a slim Type II diabetic on insulin. I told him he was entitled to a Libre under current NICE guidelines!
So if you have been diagnosed with HF tell people you only have Heart Insufficiency and ignore Dr Google!
Written by
MichaelJH
Heart Star
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Brilliant Michael, love to hear stories like this. I've already told Kevin he's got to get to the same age as his mum, she was 91! She didn't have HI or even indeed any sort of heart disease, but she used to ensure she exercised every single day, even if it meant just walking up and down the stairs in the winter when she couldn't get out. Until she was about 89/90 she'd never spent a day in hospital, not even to have her children. Kevin gets his determination from her & despite his current health issues he's still going for his newspaper at the local Tesco's, albeit on a mobility scooter 🛵 🤣
Lovely to hear your friend is still doing so well after all these years, I was also diagnosed with heart failure at 58 but mine wasn't an insufficiency mine did fail due to a faulty gene, maybe they shouldn't generilise the amount of conditions they put under the wing of HF and name them for what they are, reduced EF ect. Char
for some people heart failure is the correct term, for my husband most definitely. He was fit and well, non smoker, non drinker & perfect weight and He had sudden catastrophic mitral valve failure followed by successful repair 3 years ago BUT and it is a MASSIVE BUT he suffered two cardiac arrests a week apart post surgery. ICD fitted and Recovery was going well for first 12 months then he started to struggle again. He was diagnosed with heart failure level 1 - irreversible damage to his heart from cardiac arrests. Cocktail of meds and within a year he went from level 1 to level 4 heart failure - isn’t a candidate for a heart transplant and life is really difficult- in November last year he was given 6-12 months to live - he manages 300 steps on a good day , sleeps 15 hours in 24 hour period and is reaching end of life due to heart failure. Yes some people can reverse with meds , exercise and diet their heart failure diagnosis but for some it is literally because their heart failure is irreversibly damaged and life becomes very difficult. My husband, teenage son and I literally live day by day not knowing how long my husband has.
I’m sorry to hear the struggle that you’re going through as a family, it must be so hard.
I am both a hearty and the daughter of a fellow heart; I often say ironically heart conditions are not for the faint hearted but I actually think it’s often harder for the families and friends than those of us who have the conditions.
You sound very strong, I hope that you have lots of happiness making memories for however long you have left with your husband, I’m sure he appreciates you being by his side on this journey.
I know it’s not the same but when my Nan’s husband was diagnosed with terminal cancer, they gave him 6-12months and he lived for another 8 years; I hope your husband has a similar fortune.
I'm so very sorry to hear about your husband. My husband also has HF & he has deteriorated a lot this year which has been hard to watch. And whilst he is doing a bit better now, not sleeping so much, walking a bit more etc, getting him to eat more is difficult, he really is far to skinny. I do understand what it's like living day by day, everyone seems to be making plans for their future, holidays etc whereas you can't even plan for the day after tomorrow. I hate the unpredictability of HF, wondering if today is the day they'll turn his ICD off.
I hope you have lots of support to help you all through this. My husband is currently getting support from the local hospice. They're there to support me too & in time, if necessary, they can arrange respite care so that us partners can have some time to ourselves. Often when we're caring for our loved ones we forget that we also need looking after at times.
gosh, your story sounds just like my husband’s- sorry to hear yours. It is indeed a hard road - we have had that difficult discussion with the Gp regarding the ICD and what medical treatment my husband wants to receive- quality of life rather than prolonging life at all costs - we receive excellent support from our GP, due to our extreme remote location we don’t have hospice care / heart specialist nurses etc but our GP works amazingly well with our cardiologist and cardio thoracic team based on the mainland. We will receive district nurse support if when we need it, my husband never caught a cold or off work ill so this is very difficult for him and for our teenage son who sees the constant decline in his Dads health and this week is really difficult with the temperature rising - hot weather puts my husband’s heart under extreme pressure just as cold weather does. But we are grateful we have had bonus 3 yrs since his mitral valve collapse - makes you appreciate the small things in life 😌best wishes to you too
We too have had those discussions about when to stop meds, end of life care etc, my husband has chosen to have his end of life care at the hospice though we're a long way from that yet, I hasten to add. Unfortunately, extremes of weather is not kind to those with severe heart conditions. I'm very glad to hear your GP & medical team are on board, that really does help massively.
Is your GP able to arrange counselling for your son? It must be so difficult to watch your husband's health deteriorate & your son having to deal with it at such a young age.
we have been offered counselling individually and as a family but for now it’s not for us - we would prefer to enjoy our time together rather than chat with someone- our GP gives us welfare phone calls as well as seeing us all face to face. My sons welfare officer at school works with us - I opted to home school my son for most of this year as he wouldn’t leave his Dad but now his dad’s health is too poorly to do anything my son is trying school again. I do think this thread raises terminology discussions the heart foundation and medical professionals need to have 😊
I think there's been a campaign for years to get the name changed but it seems, certainly in the UK, that that's not going to happen any time soon. I think the medical profession take the view that technically the term is correct, inasmuch the heart is failing to supply the body's needs whether that be a mild or a more serious failure. My husband has had HF long enough that we're not too concerned about the terminology but do get very cross when people don't really understand what it is really like to have this condition and the worry & stress it causes, whatever stage you're at.I wish you all the very best for the future
Thanks for this post. Iceterrain's post is a timely warning that the term HF expresses a range of symptoms and, to some, the word failure definitely applies. I do wish your husband well, Iceterrain.
My own situation is, fortunately, at the milder end so heart inefficiency applies. But its unpredictable. Some days I think I could take on the world - others I just want to crawl away into a corner and sleep. I have (finally) learned to pace myself - its taken a while - and recognise that inclines are a no-no unless walked slowly and there are days when I simply could not do that 30 minute brisk walk. Not even for the elusive pot of gold at the end of the rainbow. Most of the time it just chugs away in the background.
I too look forward to living a long life - my father died in his early 80s (held together by medical advances in cardiology and probably pickled in red wine) and my mother into her late 80s - so good genetic inheritance.
Its always great to read positive posts about the condition and whilst I never wanted to be that old lady who carried her meds home from the pharmacy in a carrier bag, here I am, and looking forward to another decade (at least).
thank you and agree there is a difference between heart failure and heart inefficiency and perhaps now , with medical progress in drugs and treatment , heart inefficiency will become a more accurate diagnosis with heart failure reserved for those who it accurately describes.
I preferred the term Impaired Heart to HF. I think HF should be used for those who have severe issues that are unable to be managed by meds alone. HF is an awful catch all term that creates so much fear and anxiety.
Hi, what a good news story. I was diagnosed with Angina pectoris some 8 months ago which was a big shock. Then I started to think back to my mother's side of the family. Her youngest brother died at 13 with heart failure and diabeties, her father died in his late fifties, heart attack. Her brother died aged 40, heart attack, she died aged 78, heart attack. It is a wonder that I reached 80 and then had the above diagnosis. Now at 81 life has taken on a whole new dimension, I am sorting how much exercise that I can safely do, which normally consists of me having about 2 hours in my garden just pottering about, keeping it tidy and sitting in the greenhouse sowing seeds, taking fuchsia cuttings and generally potting on.My GTN spray is always in my pocket in case I need it, but by doing my breathing exercises to stop the pain,I can usually manage without having to use it. We are very lucky that locally we have a Angina Management Team, who explain what Angina is and how it forms. The team consists of heart surgeons ( NHS) who very carefully, using a lifesize model of a heart, take me through how the heart is affected by this illness. We also have meetings with others with angina, one of whom has had it for 16 years, two stents and a by-pass he is probably of a similar age.My goal is to see our three grandaughters, 21,& 13 year old twins, leave university qualified for whatever they want to do. If I acieve that then I will be a very happy grandad.
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