Husband diagnosed with heart failure - British Heart Fou...

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Husband diagnosed with heart failure

KMS10 profile image

Hello,

My husband was diagnosed with heart failure this last Christmas Eve. I dropped him off at the doctor in the morning as he was complaining of breathless. They sent him directly to hospital and the day after he was diagnosed. Due to COVID the family could not visit him in the hospital and no doctor called me or thought to informed me of his condition. The next day he was put on medication and sent home and told he had left ventricle HF with an ejection fraction of 30% - a total shock! He is 48 years old and has always been healthy. He has had regular health checks for 10 years and has complained of a high pulse to the doctors, but no notice has been taken of it. The last 5 years he has slept a lot and was always tired, however since the doctors didn’t seem to be worried I didn’t think it was anything serious. I feel so panicked and scared after his diagnosis and literally don’t know what to do. I haven’t really received a any information from his cardiologist ( we see him in 1 month) and ended up googling. How I regret that!! I have been with my husband for 27 years and he is the love of my life. I am so scared and am in tears. Does anyone have any words of encouragement? Any positive stories to share? I would so appreciate if someone has time to send me a reply.

Thank you!

21 Replies
MichaelJH profile image
MichaelJHHeart Star

Hello and welcome to the forum!

I have no direct experience but ended up needing a quadruple bypass despite BP and cholesterol being fine. My resting ECG was also normal which makes me dubious of some of these health checks!

Anyway onto your husband. The EF although important does not form the main basis of treatment but the symptoms do. With appropriate treatment and any appropriate lifestyle changes his EF could improve.

For further information look at the BHF or websites. As you have found much of Doc Google is out of date or total rubbish! You could still have many happy decades together. I imagine someone with direct experience will be along later or tomorrow.

KMS10 profile image
KMS10 in reply to MichaelJH

Hello Michael and thank you so much for your reply. It really helps to hear from others in a similar situation. I am so glad I found this site, it has already made me feel so much better! I am crossing my fingers and hope his EF will improve. I am also researching how we need to change his diet and make sure he gets enough exercise. His cardiologist said they will do various tests in a while. Until then he is being followed up by a cardiology nurse. Thank you so much for taking the time to reply! Have a great weekend!

Hello KMS10. Welcome to the forum. Having a diagnosis of heart failure out of the blue is a shock and does leave people in a daze. First of all, I hate the phrase Heart Failure, it sounds so final and defeatist. I prefer a term like Impaired Health Function, his heart isn't failing it just needs a bit of help pumping blood around his body. While the use the ejection fraction to determine the condition, what the medics are more interested in is how the patient manages with the condition. For this they use the New York Heart Association classification system, see link below

heart.org/en/health-topics/...

The BHF also produce a very comprehensive booklet on the subject, which answers the most common questions, link below

bhf.org.uk/informationsuppo...

Google is sadly notorious for providing poor information, which is frequently years out of date - you're best sticking to the sites of NHS, BHF and places like the Cleveland Clinic and the American Heart Association for accurate information.

There are lots of members of this forum who have been diagnosed with Heart Failure, and who are living full lives many years after first being diagnosed.

I had a heart attack/cardiac arrest in December 2018 and was diagnosed with Heart Failure with an EF of 30%. Since then I adopted all the suggested lifestyle changes to manage the condition, link below to American Heart Association

heart.org/en/health-topics/....

Just over 2 years later, I'm a lot lot healthier, and my EF is 40-45% and I am completely asymptomatic and exercise without problem and feel so much better than I have for years. So it really isn't all doom. I hope my post will help you, and I hope you have a productive meeting with the cardiologist (make a list of questions before the go).

Best Wishes

Hello and thank you!

Your reply really has helped me so much already! In 24 hours (since sending my first post) I feel so much more positive. I really am so thankful to have come across this website. Thank you for the links. I will read this weekend. Although I have never been an enthusiastic cook, it’s amazing what a shock like this can do. I am planning meals and cooking- my husband is in shock and I have gained many brownie points! 😄I feel so relieved to know that it is not all doom and gloom and I so appreciate you taking the time to answer me. I am so happy to hear you are doing so well!

I will write down all our questions and make sure I go to all his appointments with him. You are so right- heart failure sounds so final and we were initially petrified. My husband always tries to protect me by pretending everything is ok, but I can tell he is very worried. I will make sure I have a good talk with him and share all the great feedback I have received here. My first priority is to make sure he is as calm and positive as he can be. The absolute worst is not being able to take his worry away - but I will give it my very best shot!

Thank you so much again. Your post has made such a difference! Have a great weekend and take good care of yourself.

I'm so glad that you feel more positive after getting some replies to your post. This site really is very helpful with lots of supportive and knowledgeable people. I only found it 4 months after my event when one of the nurses at cardio rehab pointed me towards it.The tendency to Botte up your feeling up a very much a male trait, so getting your husband to talk about it is important.

I forgot to mention that there is also a brilliant Facebook Group it's called Pumping Marvellous the Heart Failure Charity Help for Hearts Facebook Group - it is a very supportive group that is well worth joining.

Best of luck with the cooking 🥘😀 and have a good weekend.

Hi, I also hate the word HF, it’s a very scary phrase but it’s not immediately life threatening. My husband of 87 years, was in marginal HF with an EF of 35% because of Atrial Fibrillation with Aortic Stenosis (stiffening of the Aortic valve) some 2 years ago. Establishing what is causing the HF is the most important step as then actions may be taken to treat the cause.

A high pulse could indicate an arrythmia but what would you call high? Knowledge is potential power as it not only informs you but also enables you to ask pertinent questions of your cardiologist. I would point out that doctor’s have to respect patient confidentiality unless a patient gives signed permission to inform you and I suspect that in these times that was the last thing to occur to either your husband or the doctor’s.

After investigations, an angiogram to ensure there were no blockages, scans and ECG and a failed cardioversion, he was medicated. He reverted to normal sinus rhythm and then started to recover within a few months, once on the correct medication and the lasted scan he had showed that EF was back to almost normal - 50%.

Now obviously my husband is nearly twice the age of yours and he has had heart damage from Diptheria as a child, which didn’t impair him so lived a very active life, running at least 1 marathon in his time.

My point is that once the shock has receded and you can start to think clearly, read the links already posted from the BHF. Compose a list of questions to ask the doctors. Understand what the medication is and what it does. Medications sometimes cause side effects, often similar to the disease so encourage your husband to keep a symptom diary and perhaps even do some monitoring, as long as it doesn’t increase anxiety, because that sort of data can help the cardiologist to establish the cause.

Look at Lifestyle factors such as managing stress, sleep, moderate exercise and nutrition and see what your husband cold do to improve because even small adaptations can really help.

More than anything - breath - LSD = Long, Slow, Deep breaths. You need to be his support and remain calm. Freak out here if it helps but be the voice of calm and positivity for your husband.

Best wishes

Good morning. I totally get your situation. I was diagnosed with heart failure, out of the blue, a little over two years ago now. I was 55 at the time. My EF on diagnosis was in the low 30s. It is total shock, I was, or so I thought, fit and well at the time of my diagnoses. I too hate the term heart failure, preferring Impaired Health Function. The later is a better description of what is happening.

Fast forward two years and with medication and a few pretty minor lifestyle changes my heart function, EF, was back in the normal range at about 56/57. Normal isn't 100, it is a range of about 55 to 70. It can take a while to get the drugs right for each individual person, mine were changed and tweaked many times.

I'm asymptomatic, apart from a bit of tiredness, probably a drug side effect now rather than heart failure. I walk, cycle, do yoga, go travelling (when we can that is). I still work but I choose to reduce my hours to 4 days a week.

My diagnoses did make me sit up and evaluate what is important in life and make a few changes. That has been a really productive thing. I live well now doing what is important. Which for me revolves around family and friends and getting out in nature.

I googled heart failure when I had my diagnoses and it scared the Sh** out of me, but what I read there has not been my reality. It has been so much better than that.

I wish you and your husband well. Best wishes x

Hello and welcome,I have to say your story seems to completely echo my life over the past four years.

Me and my husband have also been together for 24 years and have a 16 and 13 year old, he is my world (along with our girls)

Hubby had been poorly on and off for ten years (nothing serious but just not 100%) right, gps were never that concerned about progressing a diagnosis. Five years ago he went to the gp as he had a virus and couldn't shake it. He was referred with stomach problems but took consultant took one listen to his heart and told him he severe aortic regurgitation. A huge shock for us. My world was completely shaken, I completely went into panic and struggled with the diagnosis. He had open heart surgery a few months later and all seemed well. Life was back to normal.

Fast forward last year and he became breathless, he went to be monitored after a call with 111 and ten days later came home with pacemaker and is still waiting for full diagnosis. Due to the pandemic we have been completely on our own. I especially have really struggled with this, not being able to be with him for treatment and appointments. Anxiety is at an all time high.

Anyway sorry for the waffle, I'll get to my point. This group has saved me! There is so much valuable information and support. I have been given so much support and helped me feel connected with people who are in similar situations.

Like you Google initially seemed the only way I could get any information, this also really scared me. This support group I find is far more helpful.

My husband sees things a little different to me, he is happy we now know he has issues and that we can get treatment, medication and support to help us find our way through.

Try to take one day at a time, life will get easier, you are still in shock and are raw. Wishing you and your hubby well and remember we are here if you need anything. Take care.

KMS10 profile image
KMS10 in reply to GreenMonday

Thank you so much for your reply. You have no idea how much it helped. I went from being very low and seeing no way out to feeling very hopeful. Thank you! At a time like this it’s so important to try to see the positive and not the negative. Our stories are very similar- I so appreciate you taking the time. I am at work now but if you don’t mind I would love to get back in touch with you with some questions. I will write more soon. Again THANK YOU!

GreenMonday profile image
GreenMonday in reply to KMS10

Hi there. I am pleased that I can help and yes of course get in touch and if I can answer any of your questions of course I will be happy to. I totally understand and share your anxieties. Kerry.

KMS10 profile image
KMS10 in reply to GreenMonday

Hello and good morning. I just wanted to send you a message to hear how things are going with your husband? And you? I have thought about your post a lot and how we are in such a similar situation.

I live in Norway ( Oslo) and am Norwegian but have grown up in the UK so it felt more natural for me to join a group in the UK as I am a British at heart. Although I live in a different country the way they follow up patients seems to be identical. I also really understand how difficult it is feeling that you are on your own due to the pandemic. The frustration of not being able to be with my husband when he received his diagnosis was difficult. The doctor told him on December 24th ( which is when we celebrate Christmas) “ this isn’t really what you want to hear today but you have HF”. He gave him a lot of info, but I think my husband just shut off. I am actually not sure what he is thinking or how much he has taken in. He is like your husband- he thinks positive ( which is great) and says that at least he knows now and that they can treat him. I am being supportive and positive, but dare not share my worries with him in case I make him worry. As I am not sure how much he knows/ thinks about himself, I just don’t want to add to his worry.

Have you had any more news? As I was not informed at all I called his cardiologist and had a long chat. That really helped. It put things into perspective and he was able to reassure me somewhat. He focused on the positive and told me his plan. He also told me I needed to be at every single appointment with my husband so that I could ask questions and also understand. Have you had a chat with your husbands doctor? If not ( and if your husband is OK with it) I would really recommend it. It put my mind at ease. However, it may be difficult due to the lockdown in the UK.

I am having difficulties knowing how to talk to our 10 year old. Our oldest son has moved out as he is soon 21. Our youngest doesn’t understand and seems very anxious. Any tips on how you spoke to your children about your husband?

What a month it has been. I did not know it was possible to love my husband more than I already did - but yes 😄 We have become even closer. It is wonderful but at the same time heartbreaking. The moment you realize that your wonderful and carefree life is forever changed. I do find this group so supportive. If I feel anxious or worried I read some positive posts and that balances me. I just started a new job 3 months ago and work 10-12 hours per day. My boss is amazing and basically told me that I can work whenever I feel like it. However, working a lot keeps me sane and helps me find some normality. Also it stops me from overthinking.

I just wanted to let you know that I am here if you need advice or just to share. I so understand that the Covid situation makes it difficult. I do hope your husband’s cardiologist will let you join ( as ours did). If not in person, maybe you can join by phone ( if there are Covid restrictions)?

Take good care of yourself and your family!

All the best.

GreenMonday profile image
GreenMonday in reply to KMS10

Hi there, Really good to hear from you, I hope that you are all doing well and that you guys are feeling more positive.

I am not sure how to send a private message on this website so apologies. If you know, please feel free to send pm.

We have finally had some good news over the past week. We had a call from the cardiologist last week (on speaker phone so I could join in). Paul's ablation in December seemed to be a success so for the moment they are happy they ablated the rhythm that his pacemaker had picked up. It will be reviewed in March but at the moment they aren't looking to do a biopsy nor upgrade his pacemaker after all. It has taken a while for the good news to sink in after being so worried for the past eight months.

Regards to discussing the situation with our children (especially the youngest) we have been fairly open. My youngest was nine at the time of the Open Heart Surgery and we explained the situation as simply as we could, the doctor had found Daddy's heart was struggling and they were going to help fix it. She pondered this and asked a few questions. The school were also a great support and kept an eye for any concerns but they seemed to deal with it ok. My eldest daughter actually took herself off and spoke to the science teacher asking how they change an aortic valve, he was very shocked at her question initially!

Is your son currently in school (we are all home schooling again).

I am so glad your work are being supportive to you, that will help enormously. Like you my work were fantastic and have been a real support with time off but after the initial shock last May (I had three weeks leave) I find work gives me a good focus.... something I am in control of.

Has your husband had any further appointments yet? I hope that you are all doing ok, remember we are here for support.

Take care

Kerry

Hi KMS10,Welcome to the forum.

I turn 51 this year and was diagnosed with Heart Failure 17 years ago.

You didn't say what the cause of your husband's heart failure was.

For me, the Heart Failure was a result of Dilated Cardiomyopathy (Enlarged heart) which I inherited from my dad.

As others have said EF is just one indicator and not the be all and end all.

Your husband's symptoms were similar to mine (High Pulse and constant tiredness). My pulse rate has been sorted with drugs but not the tiredness. A small cocktail of drugs keeps me upright and breathing.

I'd avoid using Dr Google. His / her glass is definitely half empty. According to Dr Google I (and quite a few others) shouldn't be here.

The term heart failure is a horrific name and really should be changed. It makes it sound as if someone's heart is about to pack up right away. My mum had eclampsia when she had me and it damaged her heart. It was described as heart failure. She was never allowed to have a general anaesthetic but the only symptom she had was getting tired easily and breathless when walking up slight inclines although she was ok on big hills. Apart from the refusal to give her a General anaesthetic even for a hip replacement in her 60s, it was never treated or even mentioned ( We are going back a lot of years) and there was n no treatment for it. She died at 67. If it had happened in more recent times I think she would be alive now with modern treatments. For now ring the BHF nurses hen make a list of questions for the consultant when you do see or speak to him

Hello KMS10

i have been diagnosed recently with heart failure (sept 2020), ejection fraction of 25%. I am 48 years old, good health - i don’t smoke, I don’t drink alcohol, i eat healthy no junk. It was a shock to me. Currently i am on medications - the advice from consultant is change of lifestyle, exercise, diet (recommended here Bhf - mediterranean diet).

I am slowly taking this in, i have excellent support from my family and friends, above all, you must have faith. This bhf site is excellent because you can share your concerns with other good people, thats why i am here - i want to share my experience with those who have the same condition as me - this way my mind is at ease. I am not alone, i want to learn from others etc, and they can learn from my experience.

I would like to know, what diet is your husband on and what length time of exercise is he doing.

I have started to exercise - walking only - no jogging or weight training.

In terms of diet is mediterranean diet, Fruits, salads and vegetables, fish (salmon) And lentils. Bread and chapati etc

Thank you so much for sharing your story....

I was diagnosed with HF over a year ago, with an ejection fraction of 20%. (I was suffering with a chest infection) A shock, as I was not aware of anything wrong. Please note a healthy heart has an EF of about 55%, so 30% isn't as bad as it sounds. I am on medication, and started on cardio rehab classes, cut short by COVID. I didn't cancel my winter holiday in the Alps (naughty) but had no problems. Gentle exercise (plenty on the main BHF website) is good.Last October I had a pacemaker fitted, but am not aware of any improvement, as I had no real problems, Has he been in contact with a cardiac nurse? Mine checks on me regularly. It is a worry, I know, but not an immediate danger. Just spoil him for a bit, make sure he eats well, and encourage light, safe exercise.

Remember, there are plenty of us on this forum who are here for you both. Let us know how you get on.

Hope I can give you another positive story. I had a heart attack and cardiac arrest 7 years ago resulting in a diagnosis of Left Ventricular Systolic Dysfunction and an ejection fraction of 30%. It means the heart muscle has lost some strength and doesn't pump as much blood to the lungs leaving blood oxygen levels lower than a healthier person. Mine also came without warning. As mentioned already there is plenty of information on this on the BHF website. The cardiologist should prescribe appropriate medication to manage your husbands condition. Regular exercise will aid recovery and just walking is good enough. My wife joined me in a daily walk increasing the distance as I could until there came a point where she couldn't keep up with me and I continued on my own. I was able to join a cardiac rehab class with supervision from a qualified instructor giving instruction on how hard to exercise. Although not overweight I also managed to lose weight through good diet, curtesy of my wife, and regular exercise. Advice on diet from BHF. Sticking to prescribed medication, staying positive and exercise will all help manage your husbands condition. Once you are on this journey the worst has already happened and there is nothing to worry about. I am in my 70's and back to mountain walking, swimming and cycling all at my own pace - a bit slower than before but I can still whistle when I walk.

Wow. Thank you so much for sharing. This just lifts my spirits more than you will ever imagine! I am so happy for you. So glad you had such a great outcome! Although I am not an enthusiastic cook I am making healthy food from scratch. My husband is in shock 😄 We have a dog that he walks about 3 hours a day which is great! Has your EF also improved? Thank you for taking time out of your day. You have made mine so much brighter!!

Good to hear my story helps. If your husband is walking 3 hours a day it sounds good and I am sure mans best friend is a good comforter to help him get over his concerns. I didn't mention that disappointment and worry hit me straight away as well and seems to be the normal reaction. Just talking about the experience helped me work it through in my mind so keep him talking and involve others who he can talk to as well. BHF have a free cardiac nurse helpline he can phone to talk through any concerns or change in the way he feels. I found that specialist cardiac nurses are far more switched on to the psychological effects than my cardiologist or GP were. Two years ago I asked my GP for another echocardiogram to check any improvement in my EF but he said he couldn't justify it. Not a very helpful GP or maybe resources were stretched locally. I certainly feel it has improved and other heart patients I know tell me they had improvements on further testing so plenty of hope there. One thing to be aware of is that there could be good days and not so good days but keeping up the walking and watching weight should keep the improvements coming.

Hi hope all is well. I’m 38 next month and was diagnosed with heart failure and AF almost 3 years ago. My ejection fraction was down to 25% for the longest time. Got no help really in the uk. Especially once covid hit All my appointments were cancelled. So moved back to Canada where im a permanent resident. Anyway they have been brilliant here and saw me almost every two wks. Optimised all my tablets which was something they failed to do in uk and gave me entresto instead of ramipril. It’s a wonder drug and now my heart has jumped up to 47% which is absolutely amazing. So maybe have a word with your cardiologist and mention that drug. It worked for me and there is hope. Keep stress free and exercise I swear it helps. Anyway hope things turn out for your husband. All the best.

Chris

Thank you so much for your post Chris! Also, thank you for the suggestion regarding entresto! Will definitely ask his cardiologist. It helps so much to receive posts like yours. It does lift my spirits and I also tell my husband and it makes him feel better too!

Thank you for taking the time to reply! I feel that my husband is being well looked after. His HF nurse is not the most empathetic- but his cardiologist assures us that although she lacks some bedside manner...she knows her stuff. Also, I have faith in his cardiologist. I also have friends and family that are cardiologists, so always ask them for advice and check what I have been told. Am so happy to hear of your improvement!! That is truly amazing!

Luckily we have a dog, so I make my husband do ALL the walks to make sure he gets enough exercise ( naughty). I have also started cooking ( which really is a big deal for me 😄) to make sure he has healthy food.

Have a great day. Canada is a lovely place - the nature is very similar to Norway I have heard.

All the best.

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