Any advice gratefully received

[Battie]

Hi, about 6 weeks ago my husband was diagnosed with heart failure. I’m not really coping very well and I was really looking for any help/advice anyone could give me. Thank you

[heartmatters1]

Hi Battie. My husband has been diagnosed with heart failure & I know it is a very scary diagnosis. You feel that it’s the end of life as you know it. British Heart Foundation have some fantastic helpful fact sheets on their website on heart conditions, including heart failure. Also they have an email address where you can contact their dedicated nurses. I contacted them with our concerns & they responded very quickly. You can also ring them.

Tel: [phone]

[e-mail]

Hope this helps & best wishes to you & your husband 🤗

Ally

[Battie in reply to heartmatters1]

Hi,Thank you for your reply. I will certainly take a look. I think it’s the word “failure”. The heart nurses that we see have said it’s not the correct word to use. Best wishes to you both and thank you.

[Celtic1956]

Hi Battier Tony here heart failure not a nice term is it what it means is the heart is not pumping at a regular beat I was diagnosed with heart failure in (2020) (Jan) and I had no idea there was anything wrong with my heart other than when i walked I had leg pains My left ventricle was pumping at 25 normal is 50 + they found I had three blocked arteries and they performed a triple. Bypass at king collage hospital the opp was painless and successful and my (lv) is back up to (50) so I know the term heart failure is scary but it can be fixed I am one year on and I feel fine the cardiology team are magnificent there is some recovery time after opp and vast improvements in breathing and anxiety so good luck and trust the cardio team Tony

[Battie in reply to Celtic1956]

Hi Tony, I’m so glad that you’re feeling better. My husband to be honest thought the he had long COVID even though he had never tested positive for it. His leg did swell and he felt tired and struggled to breath when climbing stairs. His left ventricle isn’t pumping correctly but the medication is helping and the excess fluid has gone. He is coping better than me to be fair. Many thanks again, Tina

[Celtic1956 in reply to Battie]

Hi tina

[Celtic1956 in reply to Battie]

Hi tina has he ha an angiogram if not he should Tony

[Battie in reply to Celtic1956]

Hi, he is having another one in a couple of months apparently so the specialist at the hospital has said.Regards Tina

[RufusScamp]

I was diagnosed about 18 months ago, with severe heart failure, but now the shock has worn off, it hasn't made much difference to me. I am on quite a bit of medication, and I try to get regular, not too strenuous exercise. Like others here, I have found the information on the BHF website very helpful.

Heart failure is a bad term to use. "Inefficiency" would be better. It's probably worse for you than for your husband. Just encourage him to follow advice from medics, and join in where you can.

[Battie in reply to RufusScamp]

Hi, thank you for your reply. I agree with your comments on the word failure it is a bad word. I will pass your comments on to my husband. Thank you again.

[shopman]

The go to site for this is @ pumpingmarvellous.org/

[Battie in reply to shopman]

Thank you, I will have a look.

[madmary54]

Hi there. I was diagnosed in 2012 and still here to tell the tale. Heart Failure is a frightening description. If they can get the medications right for your husband he will feel a lot better. Best wishes to you both for the future.

[Battie in reply to madmary54]

Hi, yes the wording isn’t the best. They are still jiggling his medication at the minute. To be honest my husband has said that he has never felt poorly just tired and he was really bloated. Take care and my best wishes to you.

[GracieOS]

Hiya, I hate the term heart failure, it is unnecessarily dramatic and causes huge anxiety. I was diagnosed 2.5 years ago, classified as severe at the time. I was devastated. I was only 55 and perfectly fit and and healthy, or so I thought. I never felt unwell with it, just a bit tired. Post diagnosis, aniexty, caused by the diagnosis, was my main problem. But fast forward 2 years and I'm now fine, heart function back in the normal range, fit and well. It took a while to get the drugs correct for me but they are working well now. I'll probably be on them for life but its a small price for good health.

I wish you and your husband well. Hang in there it is a rough ride to start with but things do improve.

[Asti7]

HI Battie,I hope this thread helps. I was diagnosed with HF last April following covid starting early March before 1st lockdown and a subsequent clot on my heart. Nothing else wrong with my vascular system just my left ventricle. I can't say it's been an easy year but I have taken all the advice and medication and managed to get back to work in July. I have accepted that even with changes I will never be back to my old self, but life is still good.

Be supportive of each other and honest. I only have my 20 year old daughter for support, having lost my husband / father 10 years ago. I have been honest with her and she has been my rock. Life will settle. It is still early days and scary, but as you understand more and medication adjusted to suit your husband things will look brighter once again.

Take care of yourself through all this and best of luck to you both.

[spikynana]

Hi Battie,I share the views already expressed. My 93 year old mother was told she had heart failure 6 years ago. She has a lot of medication to keep her well, but apart from feeling breathless on excursion, she’s still okay and functioning. It just seems to be a very unfortunate choice of name. I wish you and your husband well.

[Danceawaytheblues]

When you hear that you have heart failure, it is a shock. I was told that I had HF last April. My EF was 35% . I felt out of breath, and constantly tired. Nearly I year on, and I am feeling so much better. My EF is now 55%, and I can do all the things that I could before. I am 75 and feeling good. My new motto was, and still is, `One day at a time`. Best wishes to you and your husband. x

[Battie in reply to Danceawaytheblues]

Thank you all so much for your replies. They have made the stress levels drop a little. I wish there was a way to change the wording they use as it certainly doesn’t help. I’m so glad I found this group and again thank you. Kind regards Tina

[Putterguy]

Hi Battie, I was diagnosed with Severe Heart Failure at the end of December. Having been a reasonably fit man this was devastating news for both myself and my wife. It is difficult to come to terms with as I have always been strong both physically and mentally. I have good support from the community heart team Doctors and my consultant, in fact seeing him today to discuss the future.

I can cope with tiredness but the anxiety I suffer with is off the scale. This causes me so many lost nights sleep and bad days,I’m hoping the meeting today will give me some better knowledge of my health and future prospects. I will be speaking to the community heart team to see if they have anyone who I can discuss coping strategies for the anxiety.

So far on my short journey through this I have found that this forum is exceptional, and helps me reading other people’s stories and how they have coped getting through the initial shock.

I ensure that any meetings I have with the professionals both myself and my wife attend. This also helps her cope with the stress of what has happened.

There is a lot of help out there don’t be afraid to get on their backs and get support.

The BHF are also excellent in providing help and support, lots of information on their web site.

Also this forum is great for support from people who have been through and going through it.

[Battie]

Hi, yes the forum has already helped me and again I cannot thank everyone enough for the replies. I do go to the community nurses with my husband and they are fantastic. We have had one telephone conversation with the specialist at the hospital but he has said the nurses would look after him at the moment. I hope you get some help and I wish you and you’re wife all the very best. Take care

[Dixy]

My husband was diagnosed with chronic severe Heart Failure about 18 years ago after several heart attacks and a cardiac arrest resulting in an ICD-CRT implant. We are not sure of the exact date because no one told us. The first we knew was when there was a knock at the door and a lady said I am the Heart Failure nurse and I've come to see XX. After picking myself up she came in. It sounds dreadful but he is still here after nearly 22 years of heart problems starting at age 46. It is a dramatic diagnosis and scary but take one day at a time.

[Battie in reply to Dixy]

Hi, I never knew so many people had this condition as you feel so alone and frightened. Thank you for sharing your experience and I’m so grateful for all the advice. Yes one day at a time. Take care and many thanks. Tina

[Dixy in reply to Battie]

To be honest, my husband found out more about his heart condition from the anaesthetist then he did from his heart consultant when he had to have gall bladder surgery. A lovely man and so honest and straightforward.

[Battie in reply to Dixy]

That’s not very good but at least your husband got answers.

[FeetheBookworm]

I was diagnosed 4 1/2 yrs ago with an EF of 17, it’s now 43. I have an ICD pacer. Once I was discharged from the heart failure clinic 18 months ago I get annual bloods done at my surgery with a nurse. Although last time they asked me to get another set done 2 months later and then got another set of tablets added - blood pressure is high for some reason.

I agree the term heart failure sounds awful and I was very grateful to get my BHF bible on heart failure from my HF nurse when I first met her. It explained so much more than the consultant who spent about 3 minutes telling me my diagnosis as if I was supposed to know all about it already.

Tiredness is a way of life nowadays but I try and follow a healthy diet and get regular exercise - walking at the moment and at the gym once it reopens.

[Battie in reply to FeetheBookworm]

Hi, we are trying to eat healthy etc, we drive all day so it’s not the best of jobs but he is doing little walks. Every thing in moderation and slowly but hopefully he will improve once the tablets have been sorted. Thank you

[Hidden]

Sorry to hear about your husband. Sometimes I think it’s equally hard if not harder when a loved one is ill than oneself. Glad you’ve found this forum as everyone is so helpful

[Battie in reply to Hidden]

Hi yes I’m finding that this forum is really good. The support is reassuring even though I’m still trying to get my head around it.

[Curlyman83]

Hi Battie. I’m another suffering from “heart failure”. Had an out of hospital cardiac arrest in late December 2020 while playing football and had to be shocked seven times before my heart came back to life. Needless to say as a 37 year old who could run a sub 20min 5k, the fact that my EF was in the 20’s was a big shock. No signs or symptoms.

The whole experience has definitely been more difficult for my wife as I can’t remember anything about the incident or being in ICU.

The upside of all this is that you come to appreciate the more important things in life. Work has taken a real back burner for me now and although we’ve not been able to do much because of covid, family time has become much more important to all of us. I’m on a whole range of medication now and have had an ICD fitted. The hardest part is that the doctors are still making enquiries as to why it actually happened - I don’t drink or smoke and I was a very fit individual (this has been the hardest part - being told I cannot exercise has been a real blow to ally mental functioning). But with time and patience things get easier - my wife is now going into work trusting me to be home alone which is a big step for her as she suffers terribly from anxiety.

I guess my take away message would be to take things slowly and not worry about things too much - this might sound stupid considering, but just try to enjoy your time together. Whatever you do, do not google heart failure as that’s a rabbit hole you do not want t venture down.

Sorry for the length of this message, but I felt it relevant.

I hope your husband’s health improves and you have many wonderful years going forward!

[Battie in reply to Curlyman83]

Hi, you never know what is around the corner do you? I won’t lie my husband is handling this far better than me as his attitude is and has always been what’s the point of worrying about things you can’t control.

Unfortunately I did google and that’s the worse thing I ever did, so that is now out of the window.

They have mentioned a pace maker for my husband but the heart nurses don’t seem to be to worried about that at the minute.

Thank you so much for you advice and sharing your story. Life isn’t fair at times and I really wish you and you’re wife all the best.

Take care of each other.

[Curlyman83]

Like I said, I’ve had an ICD fitted and it’s like my little insurance policy - it’s not zapped me yet, but I know it’s there if I need it. You should certainly ask your husband’s cardiologist or his cardiac nurse for advice on this. They’re are the professionals so they’ll know what’s best.

[Battie in reply to Curlyman83]

I will, we are at the heart nurses in a couple of weeks so I will mention it then. Many thanks