Husband newly diagnosed with cardiomyopathy at 47 years

[Winelover69]

Hi my husband is 47 years old, long story short was rushed into hospital 3 weeks ago to stay there for 2 weeks and be diagnosed with severe heart failure, cardiomyopathy.

He’s been home a week now, what my questions are, since obviously because of Covid I only got one call from doc while he was in there.

1) Any one else out there been through this at such a early age, who can give us ideas what/what not, to do, coping mechanisms, how to adapt your lifestyle ?

2) He’s only allowed 1.5-2ltrs of fluid a day, how did you adapt this to your new lifestyle. We were a very “sociable” couple before. But obviously now due to fluid allocation it’ll be hard to go out and have a few coffees with friends, let alone pints of beer 🙈

3) tips on building yourself up, he was going on one walk a day, about 15 minutes. But yesterday I got him to hoover downstairs while I was prepping lunch. Also went out on 2 x 15 minutes walk, one lunchtime & 1 at tea time. He was fine, but I don’t want to push him to hard, he use to go walking up hills 3-4 hrs a year ago, he was fine after. But I felt guilty for making him do it.

Thanks 🙏

[Thanksnhs]

Hi the same happened to me although I was 58, I presume your husband takes ferusomide and or spironolactone for fluid retention, I never had any trouble with it but I know others had a terrible time, I only had one coffee a day, for a kick start ! I put a two litre jug of water in the fridge every morning and just used that for drinks so I knew how much I was drinking, but I will put my hands up and confess as I am a very sociable person I somehow forgot to add the wine to it, guilty as charged, I also stuck to flat routes when I was out walking I couldn't manage hills at all, housework was fine, I had no choice since I live alone, the stairs were a nuisance, I did have an Icd fitted which gave me more confidence when I was out and about, I also got a blue badge for the car and a free bus pass with a companion on it, which was great when I lost my licence due to my icd firing, I still went abroad a few times a year although travel insurance is a total nightmare, but worth it just to stroll in the sun, I can't wait to get back when we are allowed, I had arythmogenic cardiomyopathy and severe heart failure, last July I received a transplant which went very well, new heart doing extremely well, just some side effects from the meds which hopefully eventually will settle down, I hope with the meds, I was on entresto, bisoperol, your husband will feel better the NHS are wonderful with the treatment they can give now for heart failure, I know by reading this form ef can actually be improved, take care and keep us posted how your husband is doing char

[Drummerboy62]

Hi there I can relate totally with your situation I was 58 last year when I was diagnosed with cardiomyopathy with an ef of 35% and came as a c complete shock we to were very sociable walks,

[Drummerboy62 in reply to Drummerboy62]

Sorry about that don't know what happened there but to continue socially we had a good life also and for a while it ended while my medication kicked in tbf it's still kicking in a year later but just to let you know it does get better tell your husband to stay the course he will suffer with side effects from the meds I bought a bike and go off maybe twice a week don't overdo it and I go walking 2/3 a week house work anything really just to keep active make sure he always brings his phone with him when we had s break during lock down we went for a coffee (decaf) I cut down on alcohol instead of every week it's now once a month it took me a while but I've come to terms with my "new" life and feel healthier and more positive now also I'm back to work in 6 weeks time so all good tell so tell your husband no matter what he's feeling to stay positive stay active (within reason) the meds will play havoc with him for a while he'll come through that best of luck😁 by the way my ef has increased to 51% so I'm proof it does get better

[Shar28]

Hello, In my experience it’s such a scary time when your husband is first diagnosed with a heart condition, not just for him but for you too. It’s normal for you both to be knocked about by it. My husband was diagnosed with a Dilated Cardiomyopathy (DCM) at the age of 54. He had a week in hospital and came home with an EF of 10-15%. He improved over the following months and years and we have a new normal, which isn’t bad or worse than before, just different.

Have you discovered the charity Cardiomyopathy UK? In case you need it here’s the link

cardiomyopathy.org

They have loads of really good information and a fabulous nurse helpline. They have an introductory pack they can post out too. We found them extremely helpful.

The BHF website is excellent too as are their nurses on their helpline.

To specifically answer your questions from our experience

1. The best advice my husband was given by doctors he met on the ward:-

Do enough but not too much

Life’s for living, so live it, just be sensible.

2. I used to measure his fluid intake to ensure he had 2 litres a day but blood tests showed he was dehydrated and he was told to drink more, so he just drinks normally now. So the limitation may or may not last, just see how he goes.

3. A little and often is the way forward. And take time just to enjoy being outdoors as much as possible as the weather improves, hopefully in the sunshine! Even just sitting watching the garden grow is good. He’ll have good days and low days, enjoy the first and don’t worry overly about the second.

My husband keeps a daily diary of his meds, his BP (not every day) what he did and how he felt so when he looks back now he can see how he’s come along. It also gives a useful objective record to discuss with his cardiologist when he has reviews.

Best wishes to you and your husband.

[Winelover69 in reply to Shar28]

Thanks so much shar28 x

[Thanksnhs]

Hi and thank you, there has been a good few wobbles to get to this point and I know it will never be plain sailing, but at the moment I am looking forward to getting out of lock down and hopefully going on holiday, I will aim for that just now, take care char

[woodygilly1]

Hi there, I'm the same 42 Covid then a dilated cardiomyopathy and stage 3 heart failure. The fluid thing, I got a small tea cup for my tea and coffee at home obviously decaf, Costa do Mini drinks which are only 200mls, failing that drinking half a cup is an option, alcohol wise maybe shorts with a mixer might be an option? A pint has too many mls, I walk 15.000-20,000 steps a day I'm a nurse, and I can't push myself anything like I used to do, I can't do intense cardio. I wear a Fitbit and if my HR goes anywhere the 120bpm I have a little restI have been told that I have a strong chance of making a full recovery with medication, but until he's up to full levels he must not push himself too hard, I don't hover, I do dishes, put clothes away, and if I do 3 tasks in the house I don't go for my walk, ask his GP, consultant or Heart failure nurse for some advise too X X hope he gets in well and he's lucky to have such a supportive person by his side X x

[Gm24]

Hi. I was diagnosed with chf and dilated cardiomyopathy last August. I was 48. I am 49 now. It’s a shock. I am male. I am on all the drugs. I get some counseling. Things take time. I get worried but doing what I can gives me some control. The walking you are doing is really good. It builds up. I try and swim every day. I used to love a beer but I don’t really miss the hangovers. I do have to intellectualise it, though. There are other things to do. Water tastes good. Things take time. Stick to the positives. Do what you can when you can. Retain and remember the positive comments you hear and read. Positive comments keep me going, I know that. Ask a thousand questions. Things take time. Keep a sense of humour. I do hope some of this makes sense and helps you. Take care.