Hi, I am an old time poster

[Ruth15]

Hi,

I was a member of the dilated cardiomyopathy forum at BHF. I signed up there 10 years ago when my mother was diagnosed with dilated cardiomyopathy and left bundle branch block. There used to be a thread called "how long?". I wanted to post this there, but here I am.

So, my 65 year old mother suddenly developed breathlessness one night. ECHO showed an EF of 20%, and heart size twice the normal. After a week in intensive care, she was discharged with EF of 35%, on digoxin, frusemide, spironolactone and losartan. Later, frusemide and digoxin (it was causing arrhythmia) were stopped. And she was put on bisoprolol (slowly built up to 10mg), amlodipine 5mg, losartan 50mg and spironolactone 25 mg.

Something else, I added after advice from the BHF forum was Co-enzyme q10. That really helped stabilise her blood pressure. She still takes it.

ECHO done after a year showed the heart had shrunk to near normal, EF was somewhere in mid-forties.

Her last ECHO was in 2011. EF was 72%!!! The cardiologist said, if he had not known of her dilated cardiomyopathy diagnosis, he would not have guessed. There was still the left bundle branch block, otherwise the heart was perfectly normal (for a healthy 70 year old).

He recommended (slowly) reducing bisoprolol dose to 5mg, but a chest x-ray in 2014 showed mild enlargement of heart shadow, so she went back to 7.5mg bisoprolol.

Currently, DCM is not something we think about at all. She has other age related problems like osteoarthritis and macular degeneration. But her heart is holding steady.

So, here we are. 20 July was the 10th anniversary of her diagnosis. At the time, the doctor had said, two years is the best we can hope for...

I received a lot of advice and reassurance at the BHF forum. I hope this post gives a little of it back.

[skid112 Heart Star]

Thank you for sharing Ruth that's enlightening and inspiring, ten years, here's to many more

[Ruth15 in reply to skid112]

Thank you, skid

[Hidden]

Hi it was lovely to read that, great to hear your mum is well, I got diagnosed in Feb this year, heart failure, dilated cardiomyopathy with severe left ventricle systolic dysfunction, I take furosemide, candesartan and spirolactane I was taken off ramipril, at present the old ticker hasn't got any worse, but none of the docs have said about any improvement, mabe it's too soon? But the question I think of all the time is. How Long! it really gets me down, I would love to hear from more people that have the same condition as me, especially if they have had it a long time, that would def help me get on with things a lot better, I am 58 x

[Ruth15 in reply to Hidden]

When I first joined the bhf forum, I read through all the posts and threads, and made a list of people whose ejection fraction had come back to normal, and there were many, many...

I wish bhf had migrated all the old posts to this new place. There was a ton of good advice, inspiration and invaluable experience in them.

All the best Chaz.

[Sina-6491 in reply to Hidden]

Mine isn't the same as your issues I'm afraid. But I hope you do receive the answers you are looking for.

I also hope others with the same as you can offer good advice & support.

Hugs, Jo

[Hidden in reply to Sina-6491]

Thanks,hugs much appreciated, sometimes I just think the docs don't really know what the outcome will be, or they are just not saying too much! it's a worry x

[Ruth15 in reply to Hidden]

Oh, I definitely lean towards the not really know the outcome side..

[laura_dropstitch Heart Star in reply to Hidden]

A very delayed response to this, Chaz, but your worries about this are so similar to how I have felt over the last six years. I still have the odd paranoid dip, but overall I think they don't say because they really don't know. There are so many new medications and treatments being developed all the time. In this last year, I've swapped my ace inhibitor (enalipril maleate) for Entresto and, while there's no improvement in heart function so far, it has helped my symptoms. I'm also taking part in a trial where I'm given intravenous iron every few months. Again, not improved my heart function but it has given me so much more energy, meaning I'm able to be a bit more active (good for the heart) and enjoy life more. The resynchronising device I have fitted (CRT-D) blows my mind! My heart function did improve during the first year of having that and I credit it with keeping me off the transplant list so far. And then there's transplant... I remember one of the cardiologists referring to transplant as the "get out of jail free card", which drove me mad, as transplant is hardly without risks and downsides, but now I do think of it as an option that's there if things ever do get that bad. And people are living for decades after transplant, longer and longer all the time. I don't know if it's the same at other hospitals, but the Jubilee team seem really forward thinking, always at the forefront of developments and keen to improve their patients' lives. I sometimes remind myself, "THEY WILL NOT LET ME DIE!" Heart failure sucks but we are so lucky to have it now rather than 20 years ago and I think things can only keep getting better for us. Do you read Heart Matters? I find the features on new research and treatments really help to keep my long-term outlook positive.

[Hidden in reply to laura_dropstitch]

Hi it's the jubilee I attended and the heart failure clinic at the Rah in paisley, I can't praise the nursing staff and the cardiologists high enough they have been great, It is just the unknown for the future I can't get my head round! I have to go back to the jubilee in a couple of weeks to discuss the meds again, mabe like yourself they can get a balance to improve my quality of life at the moment, on the plus side the old ticker hasn't got any worse, which was great to here, staying off the transplant list for now, the waiting for the phone to ring, mabe for years must be so hard xx

[Sina-6491]

That is wonderful!!!

May I congratulate your mother & thank her for her never give up attitude. Life is for living & it sounds like she is doing a fabulous job of it.

Also sounds like she has great support from you.

Lovely happy storey, take care now, Jo

[Ruth15 in reply to Sina-6491]

Thanks Jo

[marierob43]

Really needed to read that today. My husband was diagnosed with DCM in 2015 at the age of 42. Been some ups and downs since he now has an ICD and is on all the usual DCM meds. We have good appointments where all is stable and ones where there is a new issue to be addressed but on the whole he is doing well. On Thursday our 3 children will be gene tested for the condition. It helps enormously to read positive posts where people with DCM go on to live full lives as some of the information is so scary so thank you for sharing.

[Ktomoph_]

Thats incredible Ruth, really inspirational!

I went into hospital with severe breathing difficulties and complete exhaustion.

The echo showed EF 13% and enlarged heart which then had caused a valve to leak. I was put on intravenous diuretic to drain the accumulated fluid from my body - removed over 2 stone in weight of accumulated fluid that my poor old heart just could not pump around!

My EF reading after 3 weeks was 19%. I was already on furosemide, losartan, digoxin and rivaroxiban, but digoxin was stopped and losartan increased 4 fold on discharge. I was also prescribed spironolactone and told to up the furosemide dose if needed.

3 months after echo shows EF reading of 20%.

So, my question is - do you think the Co-enzyme q10 has been a big factor?

Your post really has given me a lift! Thankyou so much.