Help and support

[Norm75]

Hello, I am new to this site and feel as if I need some support as we have just had none at all from the clinical world. My husband was diagnosed with heart failure in April this year, totally devastating, he is 54. He has had his HGV and now car licence taken off him, so unable to work although doing some odd jobs. He is totally devastated and finding it hard to cope although he won't admit it. He is having a cardioversion on Thursday, we are both very worried, I just wondered if anyone on here has experienced this and what was the outcome after. I feel that our world has come crashing down, and I don't know what the future holds. 🥺

[devonian186]

Heart Failure is a very emotive and often wrongly used phrase.

During tests and treatment he would have been told his "Ejection Fraction " (EF) That is an indficator as to where your husband currently is.

What treatment has he been offered-surgical and medications?

[Norm75 in reply to devonian186]

Hello, thank you for your response, he is currently on medication to stabilise him and he has his cardioversion tomorrow, apart from that the odd blood test, but nothing has really been explained, I have heard of the EF only because I have gone online to do my own research as I feel we have just been 'left'.

[devonian186 in reply to Norm75]

No doubt you will all let us know how the cardio diversion went. As you will have read in other comments 30% EF is by no means a disaster and he can reasonably expect that to improve given the right care/procedures..

Consultants really ought to find another phrase for 'heart failure.' Average is around 50% or so , no one has 100% so its not functioning as well as the 'average' but as that includes many young and fit people its not that far down on a lot of older people.

I notice he has an HGV licence. Can I ask as diplomatically as possible whether like many such drivers, often working unsocial hours, whether he sleeps and eats as well as he should and is his weight within recognised guidelines?

[Norm75 in reply to devonian186]

Hello, I have just posted on here as a generic comment for all, not sure who can see it, but I just wanted to let you know that the cardioversion went well and we are now waiting for a scan to see how well the heart has repaired and we hope that it will be above the 30%.

I used to pack him up with lots of fruit, the odd bag of sweets and meals for an evening, so I think his diet is ok, maybe to much drink, but alot of us do I guess. He is 6.3 and did weigh 15.5 now just under 14stone. Which I think seems to be fine. I have though changed alot of things in the diet, and watching the traffic light system on foods. I have found it very hard to get any information, support and advice until I joined the BHF.

Thank you for taking the time to reply.

[devonian186 in reply to Norm75]

Excellent news! Diet and exercise and taking the medication is now the order of the day

[Kristin1812 Heart Star]

You have both had a really tough time. Many of us will have been roughly where you are now, in shock at the news and trying to make some sense of it all. Things will get clearer.

I am certain there are people in the forum who have had a cardioversion and would be happy to share their experiences with you.

We are here to help. Do call the BHF Helpline (if you need informed nursing advice). They are very helpful. 0300 330 3311.

[Norm75 in reply to Kristin1812]

Thank you for your comforting response, its a very worrying time and I guess early days, I do have the helpline number and its good to know that we can call them and also to have this forum.

[World1inmotion]

Although I don't have your husband's conditione t There are lots of people on this side who have been told they have heart failure and gone on to live long and happy lives. I saw one post suggesting that rather than use the scary term heart failure medics should use something like heart inefficiency as it d

[World1inmotion]

Sorry accidentally clicked on reply before I had finished. Your heart is not working as it should rather than not working. I would agree with the earlier post of contacting the helpline so you can speak to an expert and understanding cardiac nurse who can explain the options, what to expect and hopefully provide you and your husband some reassurance

[Norm75 in reply to World1inmotion]

No problem! appreciate your response, I will call them and ask for some advice, I'm not sure my husband will, I know he's worried but I think he's a little in denial too which is understandable.

[Deejay62]

Hi welcome. Why is your husband having a cardioversion? As he got an arrhythmia? The reason I’m asking is when I was diagnosed 20 years ago with heart failure, my EF was 43% and I had an arrhythmia, they did a radiofrequency ablation to get rid of it. After it was done they noticed my heart started pumping again.

I’m not comparing myself to your husband as I know whats causing my heart to not function properly.

After the cardioversion, which I’m hoping will be successful, begin to ask questions. What is your Ejection fraction, what is causing it etc but I think they will probably explain it all to you anyway. Many of the times they just say you’re in heart failure even if your heart function is in the 40s. A normal function is 50% and above. Mine is 23%. That word heart failure scares the life out of people. There are so many medications and devices out there now to help extend life, don’t ever give up. I’ve had years to deal with mine and I can still remember having all these terrible feelings. I gave myself 6 months to live. 5 yrs ago my EF went to 10%. I thought this is it. My cardiologist asked me if I wanted to try new meds and also if I wanted to go on transplant register, which I looked at for a while but as since declined, so never give up. There are a lot of options out there now and medical science is improving daily. Let us know how you’re both getting on, I say both as you’re together on this journey. All the best Diane

[Norm75 in reply to Deejay62]

Hello, and thank you for your response, it really is appreciated and also to hear other peoples stories, as sometimes you think you are the only one. His EF is at 30% and the last time he was checked he was still in AF 90-110 bpm. We are still waiting on a decision for an ablation, and his cardioversion should of been done in May, we have had to chase most of these procedures, its shocking and has not helped the situation at all. It's difficult to try and stay positive and motivated. Thank you for your positive thoughts and I need to dig deep. I hope you stay well and wish you all the best.

[Hidden]

Sorry to hear of your husbands diagnosis. It is a scary time. It is the unknown that is the scary part. Your feeling ring very true and they are natural. Personally I have been through the mental aspects of finding out you have a problem with the heart. Iam still on a journey to find exceptance. Trouble is the feelings are very similar to grief. I hope that you find the answers. If you read my bio you can see that i have a different issue. But rambert heart failure is really the wrong word to use it just means that it is inefficient. And the medication we have now will help.

[Norm75 in reply to Hidden]

Hello and thank you for your response, I know that my husband is suffering mentally but he won't admit it. I can see it though he is very down and I sometimes fear what he may do. I have come across many people saying that the word 'Failure' doesn't help and I agree so I am no longer going to say that. I will read your bio, and I appreciate your words.

[Cymrucurious in reply to Norm75]

Im do so sorry, it's horrible watching your hubby suffer both physically and mentally, I feel for both of you.Hope tomorrow gives you answers

[Britomartis29]

Just chiming in to encourage—he’s lucky to have you in his corner—and to tell you about my close friend’s cardioversion she had last month. They put her in hospital and used chemicals in an IV to restore the proper rhythm. The chemicals are strong so they told her that’s the reason for in-hosp: to be sure she reacts well and the rhythm is restored/reset. She was in for four days. She said it felt weird h but not bad, not painful. And she was fine, rhythms all reset. So there’s a good anecdote from the US for once. She had previously had an ablation that worked for a while but not long enough. But she has multiple troubles, not HF. Anyway, the other bit of encouraging news: of the three others who came in that week alongside her for cardioversion, in that same hospital, all were fine, all had their rhythms reset, all went home safely. Now she has a new friend-group!

No doubt, it’s scary, and you’re not wrong at all to feel worried. But this procedure is evidently something that works, and isn’t so rough on the patient either. She felt tired and wanted to rest (and did for a few days) but otherwise fine. So I’m wishing you and your husband the same. Good luck!