Hi, my GP has told me that I have end stage heart failure and have a year at the most to live. Everything is very vague at the moment as she hasn't explained anything as to what's next. I'm frequently calling 999 at night for support but cant spend hours on end in A&E without any benefit.Hopefully something is going to happen soon and I'll get some sort of support,as I can't go on like this , it's a nightmare. Can anyone advise me as to what may happen as regards to any help I may get. Thankyou.
End stage heart failure: Hi, my GP has... - British Heart Fou...
End stage heart failure
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Grayjay
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42 Replies
•
Hi,
I'm sorry to hear you've had such shocking news - it's understandable that your head is all over the place just now as you'll still be reeling from this.
What level of support are you needing from 999 or A&E? Do you need oxygen/treatment, or is it more like reassurance and emotional support?
The health service should be in communication with social work to have support put in place for you - although my experience in this is limited, I hear it can take some time.
You might find it beneficial to call the BHF helpline and speak to a trained cardiac nurse, they would have more specialised advice for you.
And of course, this forum is here for advice and support as well when you need it, there's some great folk here!
Thankyou, any support will be very welcome at the moment, I seem to spend my life gasping for breath and it's getting pretty scary. I have 02 for my COPD but needs some adjustment when I can contact O2 nurse for change of use. Just hope GP will get something in place soon , maybe home help.
• in reply toGrayjay
Aww, I hope so. I really do. It might be worth a Call to Adult Social Services at your Local Council and explain everything to them. It might get the Ball Rolling a lot quicker for you as well! 😊
Aw GrayjayI don't have any advice as I have no experience what so ever with this subject but I'm sorry for you and I wish you all the best 😔💔.
I cannot give you any practical help but so sorry you have to have been told this.
I hope you have some family support to help you through this difficult time.
Sorry I have nothing more to offer.
Dear Grayjay
What a shocking way for your Dr to tell you such news.
It would be interesting to find out how your Dr came to this conclusion and could tie the timing of demise so precisely especially about the heart.
I can only presume that you have had more tests done by your Cardiology dept but even then it is rare that they give you such a diagnosis .
I would not worry with 999 or A&E again until you have found out how your Dr has come to this conclusion.
No wonder your worried, who wouldn't be having been given that news?
But news like that needs answers and only the person that said it to you can provide you with the medical evidence as to how they { Dr } got to this stage of diagnosis .
If your not happy with what you hear then get another opinion , which is your rights.
Take care and find those answers it will help you move on to your next stage of treatment.
Never give in you are not alone.
We are here for you.
Qualipop• in reply to
MY feelings exactly. I would want to know exactly how he came to that conclusion and why a GP instead of a cardiologist and I'd be demanding an immediate urgent referral to cardiology or at very least phone your cardiologist's secretary and ask to speak to him urgently. It sounds as though you are living alone in which case contact adult social services and explain what's happening.
I am also sorry to hear of your situation. There was another post on here within the last few days concerning palliative care which is what I believe would be the sort of support you will be looking for in the coming months. The NHS has several webpages explaining what is involved concerning palliative care and an end of life programme and it seems to me that your GP has the responsibility of setting this up if you are still at home. I can only suggest that you go back to speak with your GP about this, perhaps taking someone with you to help you through the process. I hope you get something positive sorted in the near future to make your life more manageable for you.
This must have been devastating news for you. I agree that you should have a chat with the BHF nurses. Are you getting any treatment, meds etc for your condition?
Love and best wishes.
Yes, got meds etc but feeling unsupported.
I'm so very sorry and sad for you to have received this news. My heart goes out to you Grayjay and I hope you get the support you need soon ❤️.
Lily
hi. I’m so sorry to hear that you are going through this and that your GP hasn’t been very supportive. I imagine that you are feeling completely overwhelmed at the moment and I really felt for you when reading your post. Your GP should be coordinating your palliative care and ensuring your care needs are met, this includes your mental health. I would ring (or ask someone else to do it) the GP surgery tomorrow and ask for a further consultation to discuss your care plan. I would also ring the BHF helpline on 0300 330 3311 Mon-fri 9-5. Of course people on this forum will support you online and I’m sure that every one of us feels a great deal of empathy for you at this time.
Thankyou.
Yes thankyou.
I am really sorry for what you’re going through but it’s very strange that your doctor informed you of such news. Honestly I would not surrender and accept but I would ask for multiple opinions and let’s be honest no one know when their time is up except god. My uncle was told by his doctors that he has months to live and he went on to live 5 years before he passed away may god have mercy on his soul.
If you need someone to speak to just to vent you’re more than welcome to message me and I would be happy to listen to you.
I am very sorry to read this. What a strange Dr to give you this terrible news but no ongoing plan for your care. I have no experience of this but I feel for you and your family and hope you get the support you need which the lack of must be contributing greatly to your stress.
X
sending love
sending you love ❤️
Dear Grayjay, I'm so sorry to read you have been left without the support you need at this time. Have you called any helplines? BHF could be a start, and also your GP practice for a second opinion. Even if you can't get into the practice you might demand a telephone consultation. They should refer or signpost you at very least. I'm sure you've done all you can. Please be kind to yourself and know we're all out here thinking of you.
Thanks for your concern everyone. I'm just about to phone the GPs after being left in the lurch over the weekend. Hope something comes of it. I can't believe how it went.🤞💕
Why does bad news always come at the end of the week and we have to spend a horrible weekend before we can take the steps we feel necessary on Monday.
So sorry you have received this sad news and having to deal with it all must be so stressful for you. Hope you soon get the help you need. Sending you lots lots of love x
Please let us know how your appointment goes. It sounds like you need a bit of a package of support, and a coordinated response.It's not OK to be left with so many unanswered questions and feeling your only option is 999.
I really feel for you and your loved ones. If you feel you are still not getting answers, the BHF helpline might be a good option for you. I've found them informative and supportive which sounds like what you need most right now. Good information and support.
Sending warm wishes 🌸
Thankyou, I will be getting a home visit between 12.00 and 14.00 today. Should be a bit wiser.
Good Morning
I am sorry to read of your prognosis and the fact that you seem to have been given no support alongside the information . You must feel very shocked, stressed and lonely at this moment.
It seems to me you would benefit from a plan drawn up with the help of experts, so that you know what care /help/treatment you can access and when .
The BHF nurse may be able to assist and tell you what to ask for and who to ask for it. You definitely need and should have support , mental, physical and medical, to help you now and ongoing.
Please do let us know how you get on-you will be in my thoughts and I will be worrying for you.
Maybe you should see a cardiologist to discuss your options extending your life.
I believe my mother sister had also a heart failure and they said to her that a heart valve replacement could help her, but it was too late for that and accused her not coming to them earlier for this operation.
I would definitely want to talk to a cardiologist as soon as possible.
Sorry to hear your doctor as told you this. I don’t understand how she can telll you this and leave you to deal with this information unless things are in place. In my experience my cardiologist said they can’t give you a time line. 6 years ago my heart was stopping, I literally could only take a few steps, but at no time did they tell me I’ve only got a few days to live or anything. They might thought it. What they did was to discuss my options, and discuss what I would like to happen at the end, they offer palliative care, hospice or help at home etc. They also allocate you a heart failure nurse, and they see you more regularly. It’s not like cancer where they can give a timeline, all they can do is try everything they have to keep your heart going, and if that’s not possible offer end stage help. If you have other things going on which is causing it your doctor should of had all the information before she even spoke to you. Speak to a BHF nurse.
I’m sorry to hear this, Grayjay. No ideas but I wish you well.
I am so sorry Grayjay. I cannot offer advice on heart failure but my heart goes out to you. Do you have family around you for support? My prayers are with you 🙏 ❤️ x
hi so sorry to hear this. The advice you have been given on here sounds great.
All good wishes and I hope you get some answers and the help and support you deserve.
hello Grayjay,
I’m really sorry to hear the news you were delivered by your gp. By reading your profile I gathered that you have heart problems for a few years, are you are under the care of a cardiology team in a particular hospital or everything has always been happening through your gp?
I’m asking this Because I was going to suggest to contact your cardiac nurse to make her aware of your struggle in order to organise support as soon as possible with the palliative care you need and deserve.
If you are not followed by any particular cardiac centre if I were you I’d call my gp every single day in order to make him move his butt and organise the assistance you need. If that doesn’t work ask you talk to the gp surgery manager.
No one should suffer and feel abandoned like you are in this day and age.
I truly hope you’ll get this resolved soon, please keep us informed, this group really cares for each other ❤️
God almighty that’s awful that a Dr can give you this news and not go through it all properly with you - there must be some Support out there so you’re not left in limbo wondering wth is next - I might also consider getting a private appointment (if you’re able) with a Cardiologist to talk you through it all properly as GP’s often like to talk even when it’s not an area they understand as well as they would need to in order to talk you through this - Fingers crossed for you !!
Thanks everybody for your kind comments. I had a different doctor today who explained things far better and has helped me a lot. He has prescribed morphine which will help with the breathing, (hopefully). Nothing mentioned about care but think it will follow in due course. I'll keep you posted.👍
Maybe it would be helpful to have carers coming in to help you and chat with you ,you may be entitled to an overnight carer just having someone else around may make you feel happier. Another option is a live in carer
So very sorry to hear your deeply upsetting news Grayjay. I’m glad you got some better information today which has helped you. I like many others on this forum wish you the very best on your journey and I really hope you get the care and support you obviously deserve.
Take care my friend.
So sorry to hear your news and the poor manner in which it has been told to you.No doubt you are in shock, as well as frightened and worried, and the Dr really should have prepared a package of info and / or a follow up discussion for you (and a family member / friend) to ask questions. Please do push for this to happen as soon as possible.
It sounds like due to your illness you are used to taking life one day at a time already, but please do try & do & enjoy as much as you can in your remaining time ...., keep mindful and cherish each special moment you can especially with friends and family, so that you try not to dwell on the future too much or waste precious time succumbing to depression. Enjoy re-living / discussing special memories & sharing laughter.
Palliative Care should assist you with getting the best out of this stage of your life, so think about what you need over the coming months to keep you as healthy, comfortable and postive as possible and then go looking as to how those things might be obtained / provided. (Some sources are detailed below).
Then looking a bit further into the future ...
think about if you'd like to stay at home or go into Care, during illnesses becoming worse & in last stages - consider what's best for both you and your family. (Discuss this with your GP and Care Team.)
Also consider if you have wishes regarding your funeral ...dont be frightened to discuss death....if you have wishes you need to let family know.
If you are well enough you could look at what you can sort to make things easier for the family once you are gone ...
Do you have unfinished business to sort. can a friend / family member / solicitor assist to get this done? Are there bills you could get paid off? Can you sort your paperwork, Will & wishes, to assist your family once you've gone?
And also, is there anything you can do you make both yourself & others feel better? Are there disagreements you could resolve? Is there time to make an apology & say Sorry if it's neeeded? And more importantly... have you told all of your family and good friends what they mean to you and that you love them? They might love the chance to respond & tell you how great you are too!
From a mixture of experience with parents (who we lost this year) and a quick look on the web, and assuming you are in the UK...
Nursing Care / Hospice Care is arranged via your GP. This ought to be paid for via the NHS.
Contact Social Services Dep at your Local Concil ... you need to get a Care Needs Assessment done first. Social Services can then arrange (Home) Care or give funds for you to arrange privately. This will likely be means tested so you may have to pay towards it.
Also if you have a Relative looking after you they might be able to get a Carers Assessment done & claim for assistance with looking after you.
If you go into hospital then before being released a Care Package with Nursing & / or Social Services Care should be set up if needed. Unfortunately this doesn't always happen.
Look on NHS Website - type in the search bar "End of life care'. They appear to have some guidance there that might help you thing about the future stages of your health.
Try "Palliative Care" also as that is a bit different to "End of life care" as it is is there to help you get the best out of each remaining day!
Also type in " Care for the Elderly" as that gives info re getting Care also.
Age UK should be able to assist you also... i saw there is some information on line about Care via Social Sevices, but I would expect them to have both Palliative and End of Life Care also.
Local library staff may have time to assist you with finding out information too.
I wish you all the best, and hope that your GP and Social Services between then can sort the card that you need.
....Can sort the CARE that you need...
Hi Grayjay. Well, we all know that it's never a question of whether or not we are going to die, merely a case of when, where and how - and all of those can be unpredictable in the extreme. I think that being given a time frame without accompanying support is harsh at best and unethical at worst. Our NHS is certainly in need of reform when such tactics are employed.
Based on my experience of witnessing several family members and a couple of close friends die, a well-managed death is of paramount importance to ensure a fear-free experience. Good support, knowledgeable palliative care medics and access to effective pain-killing drugs helped several I know to deal with the run up to and the end of their lives with dignity and without fear.
My advice is the same as Beekite's. I agree that you are well advised to contact your local hospice. My experience is that a GP may need to refer you so that you can obtain hospice support, assuming the hospice has capacity to accept you as a patient, whether 'at home' or as an in-patient, or a mixture of the two.
Two myths about hospice care. Myth 1: they only help patients at the very end of their life. Myth 2: GPs will always offer a referral to a hospice without having to be asked and understand the timing issue.
You can ask your GP for a referral to a hospice right now; you have been given a terminal diagnosis. I suggest you speak with a hospice of your choosing to ask what support they can offer you. My friend had 'hospice at home' and had access to a doctor and palliative care nurse 24/7 for over six months. She was referred to Arthur Rank Hospice 12 months before she died and occasionally went in for short stays to have such things as blood calcium levels managed.
The support the hospice offered was fantastic. The staff knew what they were doing; nothing fazed them. My friend's experience was anything but morbid or dismal and the drug availability was astonishing. For example, after a while morphine can cause confusion (and it did). That's when alternatives need to be offered, such as fentanyl. All of this is meat and drink to hospice staff, as is the telephone call (and home visit) in the wee small hours when things can get tricky.
So, my recommendation is to find your local hospice, speak with them, visit them and, if you feel that it's the right place for you, ask your GP for a referral; insist upon it.
Finally, who has the crystal ball that says you have 12 months of life remaining? A terminal diagnosis can be notoriously unpredictable. You need to continue living life in a good way for as long as it is available to you without worrying about "how long". That prediction is anybody's guess, truly it is.
Meanwhile, I wish you peace and the reassurance of finding the strong support you so very much need and should have. I hope you are able to obtain this very soon and find something that makes you smile every day from now on.
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