Paralysed Brother diagnosed with severe heart failure, scared and confused as constantly getting conflicting information

[FrazzleRock]

DB was taken to hospital last week suffering severe breathlessness and erratic heartbeat.

He is paralysed following a spinal cord injury 7 years ago. Upon admission he was also discovered to have low sodium and calcium and "deranged bloods".

I live very far away and so called the hospital every day until I could get a day off to visit. The ward nurses always said he was OK in himself but still suffering the above symptoms as he also has excess fluid.

On Wed I spoke with the doctor who said he had been diagnosed with severe heart failure.

I went to see him the next day and it was so much worse than I expected. He is not "ok in himself" at all. He is confused and delirious. He has no memory of any visitors and will randomly shout at empty spaces before getting agitated and drifting off to sleep. When he talks its slow and slurry and breathless and incoherent. Though he is apparently not sleeping at night. Oh and now he also has MRSA too.

He's agitated and confused. His stats are still all over the place and as long as they remain that way he's at risk of heart attack or stroke.

Best case is that his stats stabilise and his heart rate comes under control and he can go back to the nursing home he lives in with care from the heart failure team to manage his symptoms and try and keep him stable.

Due to complications arising from his pre existing heart condition (a form of angina) and the risks due to his paralysis he wouldn't be suitable for more invasive treatment. So as his named next of kin I had to agree to a DNR.

It was the hardest thing to do and I can't stop crying. Once explained I knew it was the right thing to do but it hurts so much.

At the moment he reminds a lot of my mum when she was nearing the end with Cancer. But I don't know if what he is going through is down to his low sodium or the meds he is on (both potential explanations given by the nurses on the ward).

But right now, I can't sleep and I know that until he stabilises I won't be able to as I just keep expecting "the call". But then they talk about cardiac team treating at home, which sounds like we still have hope,but then the DNR discussion scared me. Honestly right how, I am so tired and confused. I've no idea whats happening and I'm so scared my brother will die

[Hidden]

Hello

I was so sad to read your post and what is happening to your Brother and obviously the severe impact it is having on you to I cannot even imagine what you are going through

I am not medically trained so I have no idea what is what on that part except he is in the right place and where there is life there is hope and that is still there while they are treating him and what they can do now is a miracle so do not give up hope

As for having to sign DNR your heart must be in bit's and I know we say this to others and is not as easy when we are having to do something like that but you have been so selfless in doing so as if the worse did happen you have made sure your brother would not go through anymore suffering which is what only a person that really loves someone can put their own feelings to one side for their loved one he is lucky to have you as a Sister

I really hope he will get better and I hope you find the strength to get through this and when you need to talk come and talk with us

I hope you will update us when you have time and I hope even more it is good news

Be kind to yourself x

[meadfoot]

So sorry to hear you and your brother are having such a dreadful time. Be gentle with yourself to enable you to keep strong for him. He will know your love is supporting him and everything you do will be in his best interests.

I so hope there is a better outcome for you both than is currently the case I feel for you. Sending a cyber hug. Stay strong for both your sakes.

[Organplayer]

so very sorry to hear your sad news regarding DNR. I wish with all my heart I had signed one for my beloved late son, he was on end of life care ( DS , autistic and non verbal) diagnosed with dementia , could do absolutely nothing for himself! We sat with him day and night ( hospital bed in our lounge) turned him over, changed him etc every 4 hours for months! Sadly he passed away in the afternoon , we were devastated and spent ages just holding him and loving him before calling surgery, only to be told to call 999, we explained Dr had said call her but no we had to call 999, he had been dead for over an hour before ambulance came and the nightmare began! We told them he’d been dead for an hour is so but they just carried on trying to revive him in the floor! I will never ever get over the sight of my beloved son being handled like that, I know it’s their job and they were so very kind to us afterwords but still ….. the Dr was very angry but I feel it was my fault for not even thinking about signing DNR form,

I really feel for you at this so sad and worrying time , best wishes to you from a still grieving mother

From Organplayer

[FrazzleRock in reply to Organplayer]

I am so sorry you had to go through that. Genuinely xxx

[FrazzleRock]

After further tests it's been established that my brother has a 20-25% ejection fraction, more likely at the lower end.He is being discharged to his nursing home today.

So his blood is only pumping out to the rest of his body at around a third of what it should be. He has been put on medication to help his heart to pump as well as medication for fluid retention. They can't give us a prognosis at the moment. He is being referred as an outpatient to a consultant cardiologist to see if they can investigate the cause of the huge attack he had last week, however its unlikely, given his vulnerability that they will investigate too much as some of the tests are invasive and require minor surgery.

Even though he is being discharged today, it'll be about 2 weeks before the heart failure team come out and see him and carry out the first lot of tests to see how his medication is working, they may know more about his long term prognosis at that point. But something tells me that all in all, if your heart is only operating at (at best) a third of what it should be and investigations or surgeryaren't an option, then that isn't going to be good news is it.

[Milkfairy Heart Star in reply to FrazzleRock]

Hello,

I am sorry to read about your brother.

I don't live with heart function problems ( I am not a fan of the term heart failure , nor was my father who had HF nearly 30 years ago).

However there are others on the forum who do.

Hopefully they will be along to share their experiences with you too.

The recent advances in medication has dramatically improved the outlook for patients living with HF. Your brother's heart function may improve overtime with the appropriate treatment.

The HF specialist nurses are very knowledgeable and will be able advise about the best combination of medication for your brother. Sometimes it can take a while to tweek the medication.

Everyone responds to medication differently.

I hope you are able to care for yourself too.

Is there anybody who can support you at the moment?

[bridgeit]

It's a tough time for you and your brother Frazzle.

Do bear in mind that you are trying to do your best by your brother; no-one can ask for more than anyone's best.

Please don't fret about signing a DNR. Resuscitation in hospital is nothing like it appears on the telly. It's a brutal process through which a mere 20% (approx.) of people leave hospital alive, rarely undamaged by the process. Dramatically less survive resus if they're elderly and/or have serious health issues. Resus very often does not extend life, it prolongs the process of dying in the most invasive way imaginable. I think you did your brother an immense service by signing a DNR.

I think making best endeavours to ensure that your brother is kept comfortable and calm is the best you can do for him now.

Is there anyone with whom you can talk through your worries and fears? If not, I suggest you look for a support service, perhaps approaching a hospice that is local to you even though your brother is not (yet) a patient. You may find hospice advice, support and information surprisingly helpful.

I hope you and your brother are able to find some peace.