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British Heart Foundation

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Goldenkindness profile image
8 Replies

Hi,

This is my first time on the site. Reading through some of the posts it seems to have a real feeling of community spirit and support. I have recently been diagnosed with heart failure. I am finding that the tablets I have been given are really helping. But today I am feeling quite breathless, tender in my back and I keep getting a bit overheated. Does anyone have any advice please?

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Goldenkindness profile image
Goldenkindness
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8 Replies
FeetheBookworm profile image
FeetheBookworm

Welcome to the forum. I have HF and was diagnosed 2 yrs ago next month. I am often very cold - particularly inntje winter months but also since it cooled down recently. In the winter we have the hearing 24 hrs a day and I still sit with a rug and wearing multi layers! And a hot water bottle is my new best friend in the colder months.

Being tired comes with the territory and I have good days and some when I can barely move. I have joined a gym (5 day membership as the GM kindly gave me 8 months FOC when I rejoined) and going 2-3 times a week. Do feel better for that. I do also walk my large hairy hounds daily whatever the weather!

Back pain is also something I experience and up high in the lung area.

I also have issues with the skin on my face when it burns and peels for apparently no reason whatsoever. Strangely enough it is usually fine in warmer weather so has started again since it cooled down.

Good news is the pills have done their stuff and my LH ventricle has gone up from the initial output of 19% to 45% after 18 months.

So my advice is to be patient (not easy) and hopefully things will improve for you.

Goldenkindness profile image
Goldenkindness in reply to FeetheBookworm

Hi FeetheBookworm, Thank you so much for your advice and reassurance. I am so pleased that your medication is working well for you. I will keep taking the tablets. I am looking to increase my levels of exercise. I love walking and find it also helps me to relax. I think you are right about being patient, it is new to me and I need to work out what is normal for me and what is not. Thanks again.

laura_dropstitch profile image
laura_dropstitchHeart Star

Hi Goldenkindness. Do you have a heart failure nurse? I had one for the first few years after diagnosis and she was amazing at sorting out my medication, balancing the side effects with effectiveness of treatment. It's always worth letting someone know (HF nurse/cardiologist/GP) about new symptoms/side effects, especially if you have only been diagnosed recently. Over time, you get to know what's normal for you. Good luck and hope you feel better soon x

Goldenkindness profile image
Goldenkindness in reply to laura_dropstitch

Hi Laura_dropstitch, Thank you so much for the information. It is really helpful. No I haven't got a heart failure nurse. I think it would be a brilliant support. I will ask my GP how I go about asking for the support of a HF nurse. I really value and appreciate the advice you have given me. Thank you.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Goldenkindness

I think provision of HF nurses varies according to area, but definitely worth asking. I found it really helpful to have a point of contact who really knew about/understood my medication. Hope you get lucky with it! X

Goldenkindness profile image
Goldenkindness in reply to laura_dropstitch

Hi Laura_dropstitch I took your advice and rang my GP who put me in touch with the right department at the hospital and I spoke to the HF nurse. She was lovely, really helpful and reassuring. I can ring her anytime I am worried or have a question. She told me thatI had probably been drinking too much when we were away on holiday and things should be settle in a couple of days. She also said that if things don't improve I should speak to my GP about water tablets. She also said that I will get used to my symptoms in time and will be able to manage my HF better. Thank you so much for your advice. I am so glad I have joined the group.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Goldenkindness

Great news! Makes such a big difference to have a knowledgeable point of contact like that. Hope you do feel better soon xx

Hi I haven't heart of your company did you find out any luck in help with it I'm new here best wishes

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