Any ideas how I go about planning for the time I might be too poorly to provide for all my needs myself?
I was admitted to hospital last year with multiple organ failure and while there I went into cardiac arrest and this speeded up the progress of my heart failure that has been around since the early 90's.
I am in fairly OK health right now all things considered but I just want to plan ahead
hello, sorry to hear about your condition
you should have a look here, nhs.uk/chq/pages/1082.aspx?...
and here nhs.uk/Conditions/social-ca...
Your surgery should also be able to give you some infrmation on what is available in your area from social services.
Hi Nancy - were you not assigned a Heart Failure/Cardiac Specialist Nurse on release from hospital? Track down your local NHS Heart Failure Team through your GP or hospital as they have community nurses etc in place to care and organise what you need both now and in the future.
I do feel your fear as every now and again the reality hits me too.
It is an odd place to be as it is so unpredictable. Part of me wants to 'do all those things I have wanted to do and not got around to or couldn't afford' and the sensible side keeps on interrupting to say things like 'but in doing this and that you may over exert yourself and actually shorten your life or you may live longer than expected but run out of money'! I even argue with myself about what food I should eat and drink I should drink now!!
It truly is an odd place to be in!
But do not fear about who will care for you in the future - there are things in place which your community HF nurse will tell you about.
good luck and peace of mind for now and the future Nancy.
Your back-and-forth thoughts and fears sound very like my own. It is a strange situation, isn't it? Nowadays I spend most of my time thinking things will probably be OK, treatments are improving all the time, but every now and again I read something that makes my stomach fall right into my feet. I'm working less hours, which works for me in the present, but every now and again I worry about money, old age etc... I guess life is an unknown for anyone though. I remember asking my cardiologist about life expectancy etc in the early days and he said that he or my husband might get cancer or be hit by a bus and be dead long before me. At the time I found it very unhelpful (I'm not immune to buses and cancer just because I already have heart failure, after all) but I do think more along those lines now. Very complicated!
Hi there. I was never assigned a cardiac nurse and have only seen the GP since I came out of hospital April 1st last year. I was sent home with no advice nor medication and only had my first meds prescribed in August this year.
On the up side, I had a very helpful chat with my pharmacist this week that says I can only be referred to the cardiac community team through the cardiologist who is organising an outpatient appointment with him for me, This will be my first appointment with him since my cardiac arrest.
Hi Nancy - sounds as if things are beginning to get on the right track for you with the planned cardiologist appointment and that makes sense to me now, as I was concerned as to why you didn't have the cardiac community team in place already, particularly with both heart failure and organ failure!
The waiting game is probably the hardest part to deal with when it is you that has the illnesses, and NHS waiting lists are notorious....
Rest assured that you will be provided with the information and care that you need, and ...love this site as it is a great place for REAL information in the hours that we need it.
Hi Nancy, no advice I'm afraid but I'll be interested to see what others come up with. Well done for taking the bull by the horns and planning ahead. All the best x
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