I’m sorry you’re feeling down at the moment. It is normal to feel like this, so try and be kind and patient with yourself.
I don’t have heart failure myself, but I know the term sounds very scary. There are more than a handful of positive stories on here of people’s experiences with heart failure which you might find uplifting and reassuring.
I have seen a Facebook group which is linked on this forum often for people with heart failure. I’m not sure if you have Facebook or are already a member, but I’ve attached the link below if you wanted to have a look. It seems like a great, supportive group too. I’ve attached their website as well in case you want to have a look at that too.
The good thing is you’re seeing your cardiologist soon. I suggest you write down any questions and concerns that you have so at least that way you are more equipped with information about your heart health.
Let us know how your appointment goes with the cardiologist.
Heart failure only means your heart is not as efficient as it should be. It is a horrible phrase,
I spent a week walking in the alps in winter with a E/F of 20%, unaware of the problem. Medical help means I am now even better, so keep looking forward, and follow advice.
Further to what I said last time, let me start by saying been able to walk 8 kms most days is amazing, when I was first released from hospital I could only do 50 yards.
One of the heart nurse told me at my first post hospital appointment 'you must have rest days' and she was so right.
I get your feeling of what you have lost but please try and not think of what you can't do but what you can, I suppose the reason why I dealt with it was when I was told I really did think I had days left so anytime extra time was appreciated, (and I still do).
Look at other alternatives which you may have enjoyed but have found you have given up or go and try something new. There is really nothing to lose.
I can understand you wanting to know why however please don't dwell on it, when I saw my cardiologist after 2 years he said he still didn't know why and was thinking of genetic testing and a health family tree (even though there is nothing in the immediate family).
Yes I am interested to know why but that's and I doubt dwell on it as it won't change anything sadly so please do the same.
As I said you are doing amazing, you are in good hands and you will hopefully find a happy medium but it does take time.
All the best and keep posting this really is the place for advice based on experience.
Hi Walkswim. I tried to write a response and just ended up sounding like some ghastly paragon of virtue!! All I will say is, 8km most days is awesome! Accept the rest days are necessary and there will be days when it gets to you but to be able to walk 8km regularly is darn good going!
heart failure is a difficult condition to get your head around - have you been offered counselling so you can freely discuss your diagnosis and work through your emotions relating to it.
Understanding what is causing your heart failure is also essential- my husband has heart failure, he wrote to his cardiologist and asked for a full explanation of what is causing his heart failure and how his heart is damaged - his was caused due to complications during heart surgery and two cardiac arrests but he now knows exactly which parts of his heart are irreparably damaged and why he takes his meds he does.
My husband was fit and well and now he can barely walk 300 steps a day, he is extremely frustrated but has come to terms with his diagnosis and this has helped him and us as a family - set small goals - yesterday we went to the cinema and loved it , today my husband will be very tired but we can talk about the film and that is lovely, 8 km walks are great but we all need to do housework, food shopping etc so getting a balance is what will help you manage your heart failure.
Some people see improvement in their condition with medication and some see improvement with correct cardio rehab - it’s important to ask your cardiologist and heart nurse questions re these to make sure you are receiving the best treatment.
And remember even fit and healthy people have days they want to sit down and relax , it’s ok not to be living in the fast lane all the time .
Hope you get the support you need to live with your condition 😊
I am sorry to hear you are feeling this way. I was diagnosed with HF in 2019 and I struggled with breathlessness. prescribed various of medication until a suitable one fits my body. Yes I was feeling tired and breathless, however this had improved wen I was fitted with ICD in July 2022 and this did help in my mind an mark improvement in my condition. However, by January 2023, I noticed that I was started to become more breathless and extremely tired and lethargic. Had more scans ECG, NM Rubium 82 and it showed that ejection fraction had decreased to 20%/25% hence, why I am feeling my recurrent tiredness. I am not sure what is to happen, but the worry is increasing. I try and put up a good front of my family. Yes the first point of call is with your heart nurse and GP but also being on this site is also a source of comfort and support.
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