Husband’s HF seemed to arrive from nowhere….in the last few months my husband has been complaining he’s more tired and he has been overweight for some time….literally the month of December was in hospital with fluid overload, BNP 6200 and breathless… echo showed left ventricle EF 10%
having defied the odds, and fought back from an end of life diagnosis….he remains in ‘palliative care’
Since 12 December he hasn’t really left bed…he sits of the side of the bed and sips drinks but quickly becomes exhausted…..he’s only eaten yoghurts since then too…although now he has supplements…
I have the following questions….
1) he had severe overload of fluids but that looks much better…he has diuretics for this…but I wonder if he is laid in bed most of the time if the fluids lay somewhere else other than his legs?
2) his lungs still have crackles apparently….but his legs have no fluid…can fluid build up elsewhere
3) he is still breathless some of the time and he isn’t even doing much…during these times his sats drop to 82but then come back up to 95 ….this has been ongoing for 3 weeks - is this normal with HF?
4) why doesn’t he have an appetite for anything other than yoghurt and ice cream….anythubg savoury is making him nauseous…
I witnessed lots of improvement last week but today he is so tired …..so trying to work out what to panic about. Everyone keeps saying we need to take each day at a time…
Nance. X
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NanceHope
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Please do try not to panic. If he is on medication for his low heart function then it will start to improve. I work as a Cardiology secretary and I type letters that say since been on medication ejection fraction what they measure has now improved from 10% to 50%. They consider 55 to be normal.
If you are still worried I would tell your GP because most of us aren't medically trained
I suggest you talk to the BHF Heart Helpline nurse who may be able to give you a professional opinion on your husband's situation, details as below. Whereas people on here can give you their own personal experiences which may be helpful, they are discouraged from giving medical advice and opinions on another members medical circumstances since it is against community rules.
Thanks. I was seeking other experiences and not medical opinions…but I wasn’t clear in that. I talked to the HF team and palliative nurse today and said I was confused that they give me different messages…I have requested a MDT next week that includes everyone in his care (he also has a brain injury)
Hi, I have HF, although my EF has only been as low as 30% that I'm aware of. My experience of fluid retention has shown that it can disperse around other parts of the body when lying down.
When I've been at my worst, my face would swell overnight, I would be coughing heavily and clearing my chest in the mornings. As the day went on and I was upright the odeama became more obvious in my legs.
Three years on and I still have a crackle in my left lung, but, between Cardio and Respiratory Consultants they're not overly concerned. Currently, I have very little or any fluid in the legs/ankles, however, I'm prone to fluid in the chest cavity/lungs, (sub-pulminary or pleural effusions) which is best picked up by CT Scans rather than X-Rays. I've had three scans in the past 12months which has shown a slow decrease in the amount of fluid.
Everyone's situation is different and like others have mentioned, cardiology will need to advise on your husband's individual case, but I have been in a similar situation to your husband. Two years ago I suddenly came down with severe tiredness, breathlessness, lung crackles and severe odeoma and was diagnosed with severe HF with an EF of 10%. I was put on the highest doses of the 4 pillars of HF meds and had an ICD implanted. Thankfully 9 months later my EF increased t 45-50% and my symptoms disappeared, but we are all different and our bodies react differently. Your husband's cardiology team will no doubt have the best care plan in place to suit his situation. As regards to the yogurt preference though, I didn't have that. Wishing you all the very best.
This sounds very similar to me, but I'm a year ahead in terms of recovery so my story might chill you out a bit.
I was hospitalised with acute cardiomyopathy 13% EF, had fluid all around my organs, waist, legs ankles and massive fluid filled blisters on my feet like melons & lungs filled with fluid. I had intravenous furosemide and a cocktail of other meds... 1.5l fluid restriction which made me want to eat icecream alot, mainly due to the dry mouth from all the fluid restriction, its hard to eat alot of other food as your throats so dry, might be similar for him I guess?... I was stuck in hospital for a month before I managed to be let out and the road to recovery was long
I was in hospital Nov-Dec 23 and it was not until Feb-March 24 that I was able to start moving about on my own properly. I still get breathless in very cold weather and when I overdo it to this day, its a symptom of heart failure.
I now manage any water retention with furosemide tablets and I am on the 4 pillars of heart failure medication.
I now go to the gym a couple of times a week and a weekly cardio rehab class and my EF number has increased to 38%
There should be a non urgent advice line you can get from your cardiologist that you can call if you have any heart failure related questions like this that can put your mind at rest, ask your cardiologist about it.
Hi NanceHope, sorry to hear your husband is now receiving palliative care.
They always seem to think fluid can only be in the ankles legs, but my experience is I get fluid in my belly more than my legs and I get cracking in the mornings when I wake up and sometimes during the night it wakes me. I now sleep upright propped up by pillows to get a goodnight sleep. It is difficult. When my EF went to 10% I lost my appetite and couldn’t eat or hardly drink. I just felt full all the time. On the meds mine went up to 23%. Maybe it also depends on what caused the heart failure. Mine was caused by dilated cardiomyopathy and arrhythmias. I hope he’s being looked after by his medical team. Let us know how he’s getting on.
I am sorry to read about your husband’s health and your worries - supporting a loved one with HF is difficult and I am supporting my husband and raising our 15 yr old
My husband is level 4 hf and extremely poorly but still at home
He sleeps for 12 hours at night plus extra sleeps in his chair- his life is bed & chair downstairs
It takes him over an hour to get washed and dressed - breathlessness is awful to see and he is exhausted
He eats very little, he has sought medical advice and he has been told to eat what he wants- some days he eats a croissant and a cappuccino and biscuits , rarely does he eat a meal - initially my son and I really struggled seeing him not eat properly but now I just have a vast selection of sweet things in the cupboard and light meals just in case
We do live day to day - it’s a challenging way to live but we actually appreciate the little things each day
Ask questions but I recommend ask one at a time and digest the answer before the next question- Tuscan become swamped otherwise
Enjoy the time with your husband, and look after yourself
Can't offer any more advice than you've been given but just a thought. If your husband is only eating yoghurt can he eat greek yoghurt? I have a sore mouth due to some unrelated treatment and find eating difficult. Currently I'm having 5% fat greek yogurt as it has a high protein content. If your Hubby prefers something sweet a drizzle of honey is nice. When you're not well and not eating it's difficult to get protein into the body and any little helps
When I was pregnant I had toxaemia and retained so much fluid that the nurses didn't recognise me at all after the birth when the fluid had gone. MY face had swelled as well as the whole rest of my body. A different scenario yes but fluid can build up absolutely anywhere. As your husband is eating so little he's going to lose a lot of weight and become weaker so talk to your GP about meal supplements in teh form of drinks. They do sweet ones as well as savoury. My dad had them when he had cancer.
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