Heart Failure

[Tutina]

Hi is there anyone who I can talk to regarding Heart Failure. My husband has it and I’m struggling to cope at the moment. We are waiting for Cardiac team to say weather they are willing to operate. Surgeon has agreed but he needs the team to agree. He needs the old valve removing and a new one putting in after damage caused by endocarditis. I would like to talk about some of the symptoms he is experiencing and how to cope and deal with it. It would be good to know there are people who understand what we are going through. Thanks Izzy.

[Tos92]

Hi Izzy,

Sorry to hear about what your husband is going through. The BHF cardiac nurses are a great resource for help and support and you can ask them your questions and concerns you have.

0808 802 1234

There are others with heart failure, experience with endocarditis, and also having had their valves replaced. I hope they come by to share their experiences with you.

All the best.

Tos

[Bingo88]

Good morning Tutina. As been suggested ring BHF cardiac nurses and they will be able to help. Or ask if they know of support groups for patients and families in your area. You could also just try putting Heart support groups in your area in Google and see if you have any luck. Brian

[Lezzers]

My husband has had HF since at least 2012, I totally understand why you'd want to talk to people who know the condition & understand. Is there anything in particular you'd like to talk about?

[Tutina in reply to Lezzers]

hi thanks for your reply. I hope your husband is doing ok. My husband has just been diagnosed just after Christmas and I have had the Palliative care team contacting me. I am struggling to understand that they are talking to me about end of care when I don’t think my Husband is at that stage yet. It seems they want to help with making him comfortable but they are not giving him any medication for shortness of breath they have suggested he takes liquid morphine when he is struggling to breathe. He is waking up in the middle of the night gasping for air. His legs and feet are swollen with water for which they have given him water tablets. He is so depressed as anyone would be. I just wanted to know does deterioration happen this quickly? I’m having a hard time accepting this. We are waiting to see if the cardiac team agree to operate as it’s Easter we are having to wait until they decide. Any info on how quickly your Husbands symptoms have progressed would be helpful. My husband is 72. Kind regards Izzy.

[Lezzers in reply to Tutina]

Hi Izzy

First, can I say how very sorry I am to hear your husband is so poorly, HF really is such an awful condition to have. My husband's nurse says most medical conditions, like cancer, follow a pattern & you know what is going to happen next but that's not the case with HF.

When you say the palliative care team have contacted you, do you mean the specialists HF nurses? Palliative care is not the same as end of life care, palliative care is usually help with making the patient as comfortable as possible, managing & showing patients how to recognise & manage symptoms etc. From the moment they meet you the palliative care team/HF nurses always discuss where you want to receive 'end of life care' at what point to stop taking meds, do you want 'no resuscitation' etc. These preferences are then recorded on the patients records so that when you are approaching 'end of life' these difficult discussions have already taken place and plans are in place. My husband first had this conversation with a HF nurse back in 2016, however he had/has been very poorly in 2022 & 2023 & has twice been given hospice support, each time they talked again about his choices to ensure they had the correct plans in place. Although we're told he's approaching end of life he is not there yet, he 68yo. He also suffers with fluid retention which is proving difficult to resolve, mainly because he has severe kidney disease.

Obviously it's difficult to advise without knowing your husband's medical background but water tablets are the usual route to deal with fluid retention. Are the HF nurses aware of his breathing problems? It's possible this is due to fluid & the water tablets should help with this, if the nurses aren't aware then they do need to be told. They will advise you on how many pillows your husband will need to keep him comfortable at night & to when to elevate his legs. They may wish to increase/change the water tablets.

Your question about can 'deterioration happen so quickly' the simple answer is 'yes it can' but it can also improve as well. My husband's deterioration was very rapid, last year it was very touch & go a number of times as to whether he would survive. The surgery cardiac nurse said that last year 'he was an ill as you could possibly be!' the same nurse was astonished to see him walk into surgery recently, last year he wasn't even able to walk from one room to the other!

The Pumping Marvelous heart failure charity is the UK's only patient led HF charity & is recommended by both nurses and cardiologists for help, advice & support. I would recommend having a look at their website for information & maybe phoning them to discuss your concerns, they are incredibly helpful & friendly and are invaluable in pointing you in the right direction, their phone number is 01772796542. They also have a Facebook group page which again I highly recommend for support and advice, absolutely everyone in the group either has HF or is the carer of someone who has HF so they completely understand what you're going through.

Sorry for such a long reply but unfortunately HF is very complicated, I hope this has been of some help to you. Please keep in touch, let me know how you get on and if there's anything else I can help you with.

Best wishes

[Tutina in reply to Lezzers]

Hi Lezzers Thank you so much for your reply which I have read to my Husband. Yes this has been extremely helpful. I think I have confused Palliative care with end of life care. Everything you described makes sense. I’m going to have another word with the HF nurses regarding the breathlessness and also have a look at the pumping marvellous people. I will keep in touch if that’s ok, and I hope your husband is managing at the moment. Again thanks for sharing your story. All the best Izzy.

[Lezzers in reply to Tutina]

Hi IzzyI'm so glad it's helped you. Yes, definitely keep in touch, you can private message me through this site if you would prefer to do that.

Thank you for asking about my husband, he is absolutely amazing, I have so much admiration for him. Since 2020 he's gone through cancer treatment, sepsis caused by a tooth infection, the dreaded 2020 'C' virus (unfortunately we're not allowed to mention it on this site) VT storms resulting in loss of consciousness several times, I could go on!! But despite all this he remains incredibly upbeat and cheerful & determined to lead as normal a life as is possible for him! He's been dealing with a serious heart condition since 1997 when he had a massive heart attack resulting in cardiac arrest at the age of 42. In all that time I have never heard him complain, he just gets on with it.

The only other thing I would say is, your husband is/will be well looked after by his medical team, please make sure you look after yourself, us wife's/partner's/carers tend to forget that we matter too & that we're also affected by this condition/diagnosis.

Take care