Jezrun

[Jeremyrunicles]

I'm 45 and was diagnosed with ef of 25% in February. Severe heart faliure with dillated cardio myopathy, due to chest infection which was diagnosed as asthma for months..had three weeks in hospital to stabilise me and get rid of infection, and the rest is history, as they say.

I'm on bisoprolol, ramipril, dapa, furosemide(when needed)and spironolactone.

I have been walking , taking meds religiously and I am fit healthy, diet Is pretty healthy also.

The only thing I do, which the cardiologist days is fine, is drink approx 6 pints of cider a week. My only vice. But the social aspect of it for me is a great tonic to lifes pressures.

Can I ask what people have done to improve ef. Just meds and excersise?

Or did you do yoga, supplements, stop working etc?

I have two beautiful 3 and 7 year old girls and very much want to give my self the best possible chance to stay part of their lives for as long as I can. I am fine with what is happening to me, it took me a few weeks to get my head round it, but there is nothing I can do to change what has happend to me, so no point dwelling on that bit.

I've read lots of medical journals, studies, and researched foods an so on, it would be great to know if you have any further advice to offer.

Thankyou in advance for any time you spend responding.

Jeremy.

[EU95PTM]

I am sorry to hear about your diagnosis. Something that I always recommend to those with HF is to take a look at the Pumping Marvellous website, it is an excellent resource with easy to understand guides. They also have a welcoming Facebook community group which is really supportive. I too have HF but mine was brought on by a heart attack. I walk briskly most days of the week for my exercise and take my medication religiously. In a year my EF went from 38% to 53% and I am largely asymptomatic and I hope it stays that way for a long long time. Wishing you all the best in your recovery.

[Jeremyrunicles in reply to EU95PTM]

Thankyou EU95PTM, I'm glad to hear you have had a good recovery. Exactly what I'm hoping for of course, and I hope yours continues also.

I'll keep up with the walking for now. And meds are all organised in a week/am/pm dispenser.. so I'll not forget those.

[Hidden]

Dear jeremyrunicles

A warm welcome to your first of many { we hope } posts.

Well it looks like you have all the right qualities to get you through this set back in your health that you have.

You seems interested enough to be able to understand fully your condition and how best you can add to the medical advice and medication that you have already been given.

You seem to already be doing the best that you can, very soon you will have a check up to see if your EF has improved with the medication and the changes you have made in your lifestyle , both of which seems to be the key to living with your type of diagnosis.

Its a mine field out here of information that span from the medically proved to the down right dangerous .

Let established known facts guide you that are provided by trusted persons or industries.

That doesn't mean you can't question them, it just means that they have done all the hard basic footwork to reach some conclusions for you.

You have a young family that needs you, please once you are settled allow this illness to live with you and not you with it.

You are doing fantastically and hopefully they have caught all this early for you.

Take care and please keep us informed.

[Jeremyrunicles in reply to Hidden]

Hi there,

Thankyou for your welcome and also your very encouraging message.

It's great people can reach put and help one another here. It's hard to explain the motions you go through in the early days of diagnosis to people who are not in the same position or similar.

I certainly will not let it control me, I feel like I have it fairly measured already. the first few weeks I wasn't resting enough but soon learnt that lesson.

I have to remind my self some days I actually have the illness. I'm lucky I feel so well with it,

Once again, thank you for your message, and hope to keep posting in the near future.

My first echo is in a few weeks, and cardiologist a week or do after that. Although it's expected I will have stayed the same for now, and looking for improvement at the 6 month scan.

Bye fir now. 👍👍

[Qualipop in reply to Jeremyrunicles]

My mum developed heart failure aged 25, when she had me 75 years ago when there was absolutely no treatment. She had eclampsia which damaged her heart. All she was ever told was that she shouldn't have a general anaesthetic so when she had a hip replacement aged 67 she had it done by epidural. Considering there was no treatment in the 1940s and she never did have any, she lived to be 69. No reason you shouldn't do better.

[Jeremyrunicles in reply to Qualipop]

Cheers qualipop. Thanks for the reassurance.

[Shar28]

Hello and welcome to the forum. You sound very similar to my husband. He had “asthma, a chest infection, possibly a small clot on the lung” -not! He actually had DCM and an EF of 10-15%, in hospital for a week then home on meds. He was 53 at the time. After about 4 months his EF was up to 25%. He declined an ICD. Then he had a MRI which showed his aortic valve needed replacing (he was born with a bicuspid valve, 2 petals instead of the usual 3 so prone to problems eventually). That was replaced and his EF stayed stable at 25%. Last year, 6years on from first diagnosis, he had an echo as he needed an op for something else and his EF is now 66%! Amazing. Its at the top of the normal range but his heart isn't normal if that makes sense.

He takes Ubiquinol, which his cardiologist and GP are aware of and puts his recovery down to that. There are clinical trials to prove effectiveness but it is said to help heart muscle and its the only real difference to what everyone else is on in terms of medication. He uses an exercise bike and does a bit of yoga (certain poses, not inverted). He too drinks moderately and has recently discovered some good zero lagers.

It takes time for your body to adjust to the meds and to the way your heart is working now. It takes time to get your head around it too, just as it does for your loved ones. We found the Cardiomyopathy UK website and nurse helpline excellent. The BHF nurses are brilliant too.

cardiomyopathy.org/

Best wishes to you and your loved ones. Feel free to shout out if you have any questions/queries etc and keep us up to date on the forum.

[Jeremyrunicles in reply to Shar28]

Thankyou so much for your message. It's very encouraging and such good news about your husbands recovery.

I was told to take cq10 by my osteopath after explaining my condition to him. So I got some from my local day Lewis pharmacy, then switched to a heart health multi vitamin which has cq 10 and many other ingredients which claim to be of use.

I also take turmeric and other tablets I can't remeber them all tbh.

I have read about Ubiquinol now and it appears it is a purer form of cq10 in some way.

Either way sounds good.

As your husband has had such a great recovery from the 10-15% ef, would you mind telling me which one he takes/took in particular please. It has to be worth a shot.

I have had such amazing care from the NHS its incredibly humbling.

Although I have had a few worrying weeks, I'm now very much ok with what has happened to me. I never give up, so I'm taking it as a bit of a challenge to control it, and not let it control me. And so far so good. Quite often I forget I have anything wrong with me as I feel better now than I have for over 6 months.

I know it's a long road to recovery, and then ongoing for the rest of my life, and that's fine.

My community cardio nurse who I see monthly, the consultants, as well as the hospital staff have been so good. I can't thank them enough.

If anyhting, this has given me the kick up the bum I needed to spend more time with family, Less time thinking about work, and enjoying my life more than I already do.

Once again thankyou so much for reaching out to me. Its greatly appreciated. It can be a lonely world at times this hf dcm.

But knowing people are out there with the same or similar issues, understand the motions and who are willing to talk, is a great help.

J.

[Shar28 in reply to Jeremyrunicles]

Hi, lovely to hear from you. its this one

healthspan.co.uk/shop/ubiqu...

I can’t say it will make a difference for you, and if it does it will take time, but the thing is that it does no harm. He takes omega 3 and vitamin D too. Meds are Ramipril, Bisoprolol, Spironolactone and warfarin for his valve.

Best wishes,

[Jeremyrunicles in reply to Shar28]

Cheers Shar,

I have been taking it for a few weeks now. Anything like this I'm willing to try. I read that it's natural supplies stop replacing in our bodies after a certain age, I think 40. Which I'm past 5 years ago now.

Do you mind if I ask your husbamds age?

I have also been on omega 3, turmeric, muti vits and have just read about one called carnitine(I think that's the spelling).

Your husband's recovery sounds amazing. So I'm keeping my fingers crossed. We are all different so I'm not relying on it, but if you don't try you won't know hey. In it to win it and all that.

Do you also mind, sorry, if I ask if your husband's drinking was/is similar to mine. I'm.currently doing as told so only 6 pint a week..

But usually a couple after work each day. And a few more at weekend. It's the pub I like really and the social aspect. I'm lucky to have a great old fashioned pub 1 min from my house and some great advice is given from some wiser, older locals.

It's not the booze it's the pub, but I'd do also enjoy a pint. They have not ridiculed me for having blackcurrant and soda yet!!

Whatever happens to me and my heart. I will drink less in the future, even though two consultants were not concerned by my 2 a day ..

Thanks again for the ubiquinol advice.

Jr

[Shar28 in reply to Jeremyrunicles]

Hi, my husband was 53 when he was taken seriously ill and is 61 now. I’m so thankful he responded so well to treatment. He’s also fortunate that his arteries are/were crystal clear so the blood flow to his heart is unimpaired - a lifetime of irritable stomach making fatty foods a no-no!

Drinking varies, but always within government guidelines since his diagnosis and now mainly alcohol-free lager (Heineken zero in his case) cos it tastes nice and like having a drink.

[Cherrelleford]

Hey I'm 36 and have DCM also. The cause is unknown in my case. I spent 2 weeks in hospital. I had blood clots within my heart and an EF of 10%. My EF is now 18% after 2yrs. I have a 4yr old and a 9yr old. I have an ICD fitted. I still have a fair amount of tests, like I have to go see the transplant team every 6-12 months and am waiting for an appointment for an ablation procedure.

Exercise wise I do anything my body will allow (I have good and bad days). I do dance workouts with my daughter, I walk lots and have a healthy diet. My kids keep me active even on bad days.

I take dapagliflozin, warfarin, furosemide, entresto and bisprolol. These are still constantly changing but at a happy place with them now.

My advice would be to listen to your body, do what you can and rest when you need to. Some days I have tons of energy so I move furniture and exercise etc which my consultant encourages and other days I struggle to walk upstairs. Everyone is different.

Good luck on your journey x

[Jeremyrunicles in reply to Cherrelleford]

Hi cherrelleford,

Thank-you for your time. Sorry it took so long to reply. Its been a very busy time with medical and family stuff.

I'm.sorry to hear about your diagnosis. Our efs are not too far apart now then, my last one was 25%. I hope you keep improving yours.

I have read about people slowly moving up with time, like 5 and six years still improving until normal. So I think always staying positive it very important. Its a long journey I've decided. Not one to just settle with.and accept.

For me my kids are the most important reason to get better. I hate the thought of not being with them as they grow older to help them and provide for them.

Most of the time my body says I can do what I want. Too much fast walking makes my heart feel sore, but seems to be getting better the more I do. It's hard as you can't see the thing which is giving you the issue.

And as people can't see your heart, they can't see there is a problem. Which can be frustrating as they forget you are ill.

Anyway. I wish you good luck with your heart and please keep enjoying life with your children, they are so precious, even if a little annoying sometimes..

I've been referred to Papworth transplant team now, so maybe I'll see you there sometime.

Take care.

Jr.

[SLK-14]

Hello there...this forum has given you some excellent advice, the only thing I can add is that I was advised by my cardiac rehabilitation nurse to take Coenzyme Q10 and Magnesium, I also take multiple B vitamins. My Consultant is aware of my supplements, but I would always check with your Cardiac Team first. My heart meds are...Nebivolol, Spironolactone, Perindopril and Dapagliflozin. I have Heart Failure due to Left Ventricular Systolic Disfunction which has improved from severe to moderate and my EF has jumped from 25 to 41 in three years.I also walk briskly every day and enjoy an over 50s fitness class.

Wishing you all the very best 😊

[Jeremyrunicles in reply to SLK-14]

Hi slk,

Than you for your time. It's great to hear from people with similar ailments.

I have been walking fairly quickly for a few weeks now. Usually 10,000 steps or more a day. So 4miles roughly. I feel it helps me a lot.

I also have been taking cq10. Also ubiquinol, which is a similar supplement.

I've not heard of the magnesium benefit before but will read up about this. I suspect. It maybe in my multi vit anyway.

Great to hear about your excellent recovery from low ef. Fingers crossed this will further increase into normal ranges.

Thanks again fir your time.

Jr

[SLK-14 in reply to Jeremyrunicles]

🫰🌈😊

[uzininemm]

Welcome,

Good to hear you have come to terms with it and are positive going forward that is the way to go, one thing you didn't mention which you should get is heart rehab, have you been offered it? If yes do do it and if not ask for it. It is very good and is another piece in the jigsaw of life with heart failure.

Based on my experience dependent on what you did activity wise before you may find you can't do the same intensity or length of activity as you did before and that some days you will feel more tired that before.

As you are finding out, you will see what works for you and what doesn't, I am sure your cardiologist has told you the signs to look out for.

Whilst I don't drink, my heart failure nurse did say you can enjoy a drink but don't exceed the 14 units recommended a week. As you have not mentioned are you on a fluid restriction of 1.5l a day (which includes the cider😀).

All the best on your continued journey going forward.

Just one other thing to bear in mind the weather, be careful when it gets really cold or really warm.

[Deejay62]

hi Jeremy welcome. I also have dilated cardiomyopathy, which runs in my family. My EF is now 23% it was 15%. It’s a struggle most days to do things, but I began to swim and do Aqua aerobics which I think improved my EF, but also the cocktail of medications I take, but I do struggle. I had a bi ventricular pacemaker fitted 11 years ago when my EF went to 15%, and about 4 yrs had an upgrade with a defibrillator added.

You are still young and I’m sure in good hands medically. Just keep exercising and eat health you will be ok. I’m sure you get enough exercise with 2 little ones. There are various support groups run by the BHF.

I wish you all the best and hopefully your EF will improve over time.

[Jeremyrunicles in reply to Deejay62]

Hi deejay,

Thank-you for your time.

My main aim in life is to have fun. Always has been and will be, for as long as I'm here.

So staying alive and well is very high on my list and has been for years.

Having our low ef is not ideal, but I gird dim currently lucky as I can do most things (except have more than 2/3 pints which I want to do.

Having only been recently diagnosed with hf with low ef in Feb I'm keen to get mine back up as far as I can with meds, then have crt, to fo the last bit when I need it

I have been refereed to the transplant team for review as I'm a good candidate I'm told. Not sure if that's good or bad to be honest. Fingers crossed I won't get that far into this whole business.

Anyway, thanks again, and good luck with your ongoing care amd health.

Jr

[Deejay62 in reply to Jeremyrunicles]

I was referred also and went there in 2019 and wasn’t sure after speaking to the coordinator. I was due to go back, if I decided to go ahead, but covid came and since then I’ve changed my mind. Hopefully your EF will go up, but at least you will have the transplant option if not. I’m 62 now and I’ve had a good life so I’m not interested in going through a transplant I will leave that to you young ones. All the best.