Heart failure nurse.

[Patjo]

It is 4years since my hubby 's heart failure diagnosis and his gp has finally mentioned getting him a heart failure nurse. What should we expect to happen now?

[Lezzers]

I'm surprised your husband hasnt been referred to a HF nurse before now! The first time my husbands nurse came to see us, she talked us through what HF actually means, what we can expect, what may or may not happen. She discussed how my husband & myself felt about his diagnosis and how I felt etc. She discussed symptoms, what to look out for, she changed his meds, took his BP. We talked end of life choices (long way from that right now). Discussed our worries & concerns, etc. I would suggest you write down anything and everything you want to ask about. Have a look at the Pumping Marvellous website, lots of info on there that is really helpful.

[Patjo in reply to Lezzers]

Thank you Lezzers.That's very helpful, albeit very jolting when you mentioned end of life. I will make notes as you suggested.x

[Lezzers in reply to Patjo]

I think EOL is just of the things they tell you about, it wasn't a big issue and and it wasn't done in a morbid way at all, just in general conversation. My husband is a long way off that yet, please try not to focus on it. I can truly say his nurse was so helpful & informative we felt so much more at ease as we understood the diagnosis so much more.

[Prada47]

Hello Patjo

Nice to meet you.

I was just smiling at lezzers EOL comment it's one of the things that comes up from time to time.

I (we } were at a forum for Heart Failure when (we) my wife and I first heard EOL talked about and it was a shock !! To cut a long story short I have discussed this with my Heart Nurse and she just said you have a better chance of dying of something else long before the heart failure gets you. LOL So I (we) just live life to the full.

It looks like your GP may have got the NICE guidelines Everyone with Heart Failure should have a Care Plan keep us up to date on how you go on .

Regards

[Lezzers in reply to Prada47]

That’s exactly what Kevin’s cardiologist said to him as well, more chance of old age getting him first.

[Hidden in reply to Lezzers]

Interesting post. My specialist told me exactly the same and how well the operation and health had got so much better. Would that be the reason I had no idea of a heart nurse or even a care plan? But to be fair, if I have done so well, would we (wife and I) benefit from this in the long run. Even considering EOL advice since we knew from the start the whole episode from HA to bypass, I was incredibly lucky with the health choices I had made some time before.

[Nanasboys]

Hi I found out I had heart failure in April and was rushed into hospital my consultant is lovely and I have heart failure nurses that I go and see at royal Bolton and they check that everything is ok and that my medication is doing what it should when your husband see 1 they will do the same tell him if he has any worries to talk to them about it and they will put his mind at ease good luck

[Patjo in reply to Nanasboys]

Thanks for your replies everyone.You guys are the best. I will let you know how things go.

[SpiritoftheFloyd]

Hi Patjo

Glad to hear that you've finally got a HF nurse allocated, seems strange that it should have taken so long.

End of Life is a subject that frequently comes up. I also asked some months ago what the prognosis was, to be told that the chances are that something else would get me before my heart gave up!

The subject came up again when I discussed having an ICD fitted, this time the issue was about deactivating the ICD as getting a shock wouldn't be appropriate at EOF.

End of Life is not something we're very good at talking about, and I think nor are a lot of doctors. I like the attitude in Mexico where they have the Day of the Dead(Día de Muerto) shave a picnic/meal around the graves of their ancestors where rather than being morbid they have a celebration of their departed loved ones

[Patjo in reply to SpiritoftheFloyd]

Thanks for replying.Thats a wonderful attitude to aspire to but I wonder jow many of us are able to adopt it! X

[Qualipop in reply to Patjo]

Pretty sure a lot could. When my mum died, our vet, a good friend, arrived with a huge bouquet of flowers and a message saying "Look at these, they are for YOU. May their beauty remind you of the good times and laughs - and they did.

[Patjo in reply to Qualipop]

That's wonderful!

[Qualipop]

After watching Corrie last night, ( Incredibly well done) this is just what we were discussing; the reluctance of almost everyone to accept the fact that we are all going to die at some point. Heart problems force you to face your own mortality and even if it may be many years away or you may be hit by a bus tomorrow, it is something people need to think about. I too have been told thee chance of me dying of something else is far higher than heart.

[SpiritoftheFloyd in reply to Qualipop]

You're right, heart problems do indeed force you to face your own mortality. I'd been intending to make a will for some time, after heart attack/cardiac arrest, it was one of the first things I did. We all put this type of thing off, and that leaves a lot of mess for other people to sort out after us. People really should talk about these things

[Qualipop in reply to SpiritoftheFloyd]

That's what I did too. I had a will but it needed updating. Am also thinking about power of atttorney but the cost puts me off and the house is getting a darn good clear out. NO matter how old we are, death can happen to children, people in their 20s and, like a dear friend of mine just last week, at 91. Make every day count but make plans.

[SpiritoftheFloyd in reply to Qualipop]

So it isn't just me who had that reaction - some friends looked at me strangely when I said I was off to solicitor to make a will, but to me it seemed logical. I also gave the house a good clear out, did some decorating and sorted out a few niggles around the house

[Qualipop in reply to SpiritoftheFloyd]

I also went through all paperwork with my son to be sure he knew what to claim and where it all was. Still can't get hubby to do a will though. OR sort out his non existent filing system!

[Patjo]

Thanks for replying. How are you now? What was the problem with ramipril?

[Patjo]

Good t hear you are doing well. Long may it continue.