Changes in support.

[Love100cats]

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?

[pinnelli]

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

[Love100cats in reply to pinnelli]

Thankyou pinnelli. I knew as I was writing my post what the logical answer was. But I'm still caring for h.f. husband who will see nurses (end of life) so perhaps they reason that they can keep an eye on me when they do his home visits. I just had to get some negativity out of my system🤔

[Love100cats]

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.

[Griff-64]

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.

[Love100cats in reply to Griff-64]

Thankyou. This need to feel you are not alone in a situation is so strong. I didn't post for a week thinking about it all but so glad I did. Yes. You can say you understand because you do as obvious in your post.

[jimmyq]

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.

[Love100cats in reply to jimmyq]

Thank you jimmyq

[Griff-64]

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.