My brothers in hospital again. He's over loaded with fluid, in Feb it was 5st this time it's 3st. He's 53 has had a defib/pace maker fitted since he was 31. He's in hosp on the renal ward, waiting for a bed on cardiac ward. He's not eating very much, the fluids around legs and lower body. He's restricted to 750ml of fluids a day, but don't even think he's hitting that. He's very confused. He's got the tremors in his hands. He's breathless. He's in and out of "sleep". His left side of the heart is working at 15% capacity. They can't give him any dirate because his blood pressure is up and down, mostly low. He's cold but his temp is "normal". The consultant says they are doing all they can but he needs to be on cardio ward, but no beds and a "waiting list for beds". He's been in hosp since last Saturday. I'm just so scared. I don't know what to do or say to him. He's said himself "you can't live forever". This is taking away any firm of independence he has no quality of life. I'm writing this down and I see it's really bad, there's nothing I can do to make him better no matter how much I want him to be. How will I know it's "near the end" what will the hospital to for him? Is there palative care available for Heart Failure patients?
How do I know it's "end of life?" - British Heart Fou...
How do I know it's "end of life?"
I'm so sorry to hear about your brother.It seems that he's been ill for so many years.Can you ask to speak with a doctor to get some clarity about what is going on re. his ongoing care? I hope that you can and that a cardiac bed is found for him very soon. I would think that he could then receive palliative care as needed.Take care .
Thanks. We've spoken with doctors on the renal ward and they are carrying out further tests they like us are desperate to get him in to the cardiac ward. It seems no more can really be done until he's on the right ward.
That's such a shame, I hope a bed becomes available today. xx
Thats not a shame its a total disgrace and would have never happened some years back. I would try contacting my MP and asking for assistance with this!!. If this is permitted for a 53 rear old what chance would you have in your 60s or 70s. Bloody awful treatment.
I'm really not sure my MP could or would do anything but will try anything. Thanks
I was one of the first to say how well the NHS do how devoted staff were and how smooth the service runs. I've seen a very different side to the NHS over the last 3 months. There are still slot that care and do their best, but there's still those who don't care, who make excuses after excuses and things don't happen. I know they are really overwhelmed, over worked under staffed and under paid, but in this case it's my little brother that's suffert from lack of beds, lack of care and compassion. Yeah he's 53 should be in his priney. He's coped with heart Failure since his 30's but now he needs help there's little help really on offer.
I think the problem really lies with management and the NHS is top heavy with management who are paid way in excess of what they are worth. And you will always have people that do not care and a few years ago they would not be tolerated by the Matron who would put them in their place but due to lack of funding the Drs and nurses are overworked and underpaid and the lions share of the budget goes to management and contractors. I am from Ireland and the UK NHS back in the day was the envy of the world and as such being our closest neighbours we emulated the same system which was great for a long long time. But now like your NHS our system is exactly the same with long waiting lists and top heavy top earners resulting in over 50% of the population taking up private health insurance which is really great once you can afford it. I think the UK will eventually head down the private health insurance route as I can not see any fix for both our health systems in the future. I hope your brother gets the help he most definetely deserves as it all seems to be a lottery.
I stand corrected!!
Thanks. Sorry to hear about your mum. My brother isn't on morphine just yet, he doesn't seem to be in much pain, but he wouldn't complain if he was. His lower part of his body is just "heavy". Thankfully no skin has broken just yet.
Bless you what a terrible situation your brother and you are in. I am sure medics are doing all they can to seek out a cardiac bed. From what you say they are caring and supportive. Is there another hospital close at hand they could try to see if they have a bed to transfer him too.
It doesnt sound as though he is at end of life as horrendous as things are and if that became the case you will get all the support available.
Palliative care is for all conditions. Feel so sad for you both and your brothers suffering. Stay strong and fight for his needs, yours too. Best wishes.
So sorry to hear about your brother. It is so hard for him and all the family.I think the renal team are probably doing their best but I'm not sure why they keep making the excuse there are no beds on the cardiac ward? A Cardiologist should be visiting your brother on the Renal ward every day to assess him and surely they have cardiac monitors in the ward he is on? I think I would demand a bit more attention from the right people. It is simply not fair that he's left without the critical help he needs. Unfortunately, as we've all come to realise, you have to kick up a fuss to make things happen in the NHS now.
I really hope things improve for your brother. It must be so hard for you to watch.
God bless you both,
Susie x
Thanks. I keep asking about a bed but still nothing
How often do the Cardiologist team visit him?. Its fairly irrelevant which bed he's in. The right team should be looking after him wherever he is in tje hospital. I would ask for an appointment with his Cardiology consultant. Please let us know how he is doing x
Good morning....so sorry to hear about your brother's situation and I hope they sort it quickly. If they haven't got a bed on the cardiac ward I'm sure the doctors should still go to see him ....I would check this out. Also ask about options for him being transferred to a hospital that has got a bed on an appropriate ward . Pals are usually pretty good at giving answers....as someone else has suggested....give them a call at the hospital. Hope you at least get some answers and that your brother's situation changes for the better x
He's not fit enough unfortunately to be moved. Thanks for PALS will contact them
Oh bless him. I would definitely be kicking up a fuss as to why a cardiac doctor has not been to him though. It must be so upsetting for you all. Take care and I hope something more positive happens x
That's my next step today at visiting thanks
I am so sorry to hear about your sad situation. Your brother is so young. Life seems so unfair sometimes. I just wanted you to know that I am thinking of you xx
So sorry to hear about the situation 're your brotherHe's lucky to have you fight his corner
Prayers and hugs to you both
Hope you soon get some help and answers
Stay strong x
So sorry to hear you are going through this terrible time. Its heartbreaking seeing a loved one suffering and you can't do anything to help. I have been in that situation myself. I hope they can get him a bed on the heart ward and get him feeling better so his organs can start working better and getting rid of the fluid in his body. Thoughts are with you. Brian
Hi
I’m sorry to hear about your brother, what a very difficult and upsetting situation to be in.
I completely agree with Sljp0000 reply
I would be demanding a few more answers, the cardiology team should be visiting your brother and directing his care.
The answers they have given you so far are not acceptable even in these days of the NHS crisis
Sending strength and determination to you x
Dear Table Lady, I wouldn’t say this if you didn’t have such a clear assessment of your brother’s sad situation. It may be that his doctors don’t have much hope but don’t feel able to be honest with you because you are naturally begging them to help him. I do think an honest conversation would be helpful to everybody (assuming you haven’t had it before). My husband died of cancer quite recently and we were told quite flatly that absolutely nothing helpful could be done. But in your brother’s case something can be done, but considering his poor quality of life, is that what you both want? Hopefully he will get to the cardiac ward very soon and he will improve but then maybe, as he seems accepting of his possible death, you could talk about the future.
Letting someone go is the hardest thing, bless you both xx
Dear You,
I am truly sorry to hear the way both your Brother and yourself are suffering with lack of knowledge on how to handle both his illness and his prognosis .
Whatever stage your Brother is at he deserves the best care that there is to make his situation as tolerable and comfortable as possible.
By now you would have been contacted by the palliative care team if he was at that stage, not being contacted by them seems to point to the fact that his medical team thinks there is more that can be done to prolong his life, these are the questions to ask.
The process of death is a very known one and indications are present well before the patient dies.
This part of care is very specialised and you { being next of kin } will be involved as much as you want to be, while being guided by specialist nurses/Drs.
This normally involves a hospice where you and your brother will both be looked after.
My thoughts and pryers are with you both
Thanks. Didn't realise that palliative care team helped with heart failure patients. Will see what today brings.
hi. I’m so sorry about what you and your brother are going through. Having been in a similar position myself I can empathise with your situation. I would encourage you to be assertive with the staff and ask them what his treatment plan is. They should be able to deliver his treatment plan irrespective of which ward he is on, of course it’s always better to be on a cardiac ward as a heart patient as there are always specialist staff around. I’d encourage you to get PALS involved. Sending you hugs. Xx
Hello,
I am so sorry to read about what you and your brother are going through at the moment.
End of Life Care is offered to anybody during the last year of their life.
Palliative Care/ End of life nurses tend to be available during the week. Very few hospitals provide a 24 hour, 7 day a week service.
Waiting for a Cardiology bed is unfortunately becoming a more common occurrence.
I had to wait for over 48 hours in pain on an acute medical ward, recently before a bed was found for me on the Cardiology ward and my treatment started.
My Cardiologist was very apologetic, there was nothing they could do as they had difficulty discharging other patients.
I was reviewed by the Cardiology team every day on the ward.
One other suggestion. Have you considered contacting the Chaplaincy service to support you during this difficult time?
You don't need to be religious to use this service, however the Chaplains can provide a bridge between you and the medical staff.
They can help support you in the discussions of the ongoing plan of care for your brother.
So sorry to hear what you going through I really hope your brother can get a bed on a cardiac ward soon ❤️ take care and sending hugs x
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