I've not been a patient long but having the heart failure nurses over the last 9 months has been such a help even though I only saw them every 6 weeks. I assumed that the support would continue as I am a heart failure patient. So at the end of the last appointment the nurse said she would see me in 2-3 months. Ok. But in the follow-up letter she says they are likely to discharge me after the next appointment. If I was younger, if something was planned to improve my condition, if I could feel I was getting better I would feel differently. So it seems I will just continue on bisoprolol, furusemide, spirolatone, losartan, thyroid meds, etc,etc ., waiting for angina or something else to happen. I just want to know if any others expected long term care from heart failure nurses or is this a local issue?
Changes in support.: I've not been a... - British Heart Fou...
Changes in support.
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Hi,
It’s difficult when they discharge you, as somehow you feel someone was ‘watching over you’ when supported. However one, it’s not feasible for the health system, but two, and importantly , it is / will be best for you. We have to move on somehow.
We (I certainly did) become dependent on that support & it’s not mentally healthy.
There is support in other ways, your GP, a forum such as this, local rehab classes for example.
Take care it gets better
I like your last thought of a new normal. My priority has to be caring for my husband but the heart.f. nurse is insisting I go out just 20 mins each day. I'm looking a bit pale and oxygen levels are low. So that is part of my new normal. Thankyou.
It's tough looking after someone else 24/7 when you have your own issues.
That's the position I'm in, and have been for a few years, my own problems have taken a back seat.
I do get an annual "mot" though, general health, eye health, feet etc. Anything to do with MVA though, I have to ask.
My partner , who has MS, muscular dystrophy and lots of other things, has regular visits from a community matron, who keeps an eye on me too, I get good, general advice from her if I need it.
I have met a couple of MS sufferers lately who have gone on a plant-based diet. I looked it up for you. See this link: nutritionstudies.org/multip...
You know the first paragraphs so skip down to "Plant-Based Diet and MS".
I hope this helps.
In the past, I've felt quite vulnerable, it's a huge responsibility looking after someone, especially if you become unwell yourself.
I was a bit timid, but realised I had to take charge of the situation, for my partner and myself.
I decided I'd ask for names and phone numbers, should I need them.
Just knowing I could contact someone was very reassuring.