Dilated cardiomyopathy

[Humbie64]

Hi everyone. I am 57 and was diagnosed with dilated cardiomyopathy earlier this year, and with a cocktail of meds and change of lifestyle my health has improved. Recent MRI and Echo scans showed that my heart function impairment had gone from serious to moderate with a EF of around 33. Better than before but not great. Does anyone have any experience of getting heart function and EF back to normal/average?

[GracieOS]

Yes I do. It took best part of two years to get there but my EF went from low to mid 30s to 54, which is marginally below normal. Normal is 55 to 70 as I understand it. I was diagnosed 3 years ago with dilated cardiomyopathy and heart failure. I was 55 at the time, 58 now.

[Humbie64 in reply to GracieOS]

Thanks GracieOS. Sounds like you are doing really well

[FeetheBookworm]

My EF was 17 when I was first diagnosed and after 3 yrs had gone up to 43 so I was discharged from Heart Failure clinic to GP care. It has remained at that figure for last 3 yrs. I have bloods twice a yr and take the usual load of tablets. Also have DC. I have an ICD. My overall care is now at Harefield and they arrange full range of tests there annually. I had palpitations quite often earlier on this yr and a holter monitor picked those up. The doctor I saw for my last ICD check at local hospital referred me back to local HF clinic and have had an app with HF consultant next August.

[Putterguy]

I have DCM and at diagnosis I had an EF of 17%. This was back on Dec28 th 2020. Lots of usual medication. Put on Entresto a few months back plus just gone onto dapagliflozin, had appointment with cardiologist couple of weeks ago and EF gone up to 30%. Which is a slight improvement but I’ll take it. As the cardiologist says I have had a severe event with my heart and it is not a quick fix. ( but any improvement is good)I generally feel ok, have my moments of a bit breathless and tight chest plus a bit of thumping going on in there now and again. ( learning to live with it) have to rest a couple of days per week, ( took a while for me to accept that I need rest days)but generally feel ok on the other days. Whilst I know we all want to improve quickly, we all heal( when we can) at different rates. As the saying goes time is a great healer 🤞. My advice, Don’t try and rush the healing process. Take your medication, eat reasonably well( My treat once per week is fish & chips, fish very lightly battered of course)exercise as best you can, listen to the experts and be kind to yourself. Always important being kind to yourself.

[Curlyman83 in reply to Putterguy]

Hi putterguy - I’ve been on Entresto since Apriland my cardiac nurse is looking at Dapa for me in the new year. How have you found yourself on this?

My BP is quite low and the cardiologist has got me on almost the highest dose of bisoprolol due to ecotopics.

I’m wanting to try dapa as I’ve heard good things, but worried it could negative impact on my BP. How has your experience been?

[Putterguy in reply to Curlyman83]

Hi curlyman, I tried Dapa once previous for a week and came off it. I had a problem with my stomach and loosing weight. My weight loss and stomach problem started a few days into trying dapa, so came off it. As i have posted before it turned out it was just a coincidence as what I actually had was a stomach bug called Helicobacter pylori a common bug that can cause stomach problems and stomach bleeding plus stomach ulcers. Anyway The consultant really wanted me to try dapa again as it has good results for HF patients, he told me about the trials which show various benefits for us. So been on it a fortnight now and so far had no problems at all. It hasn’t made any difference to my BP as I also have lowish BP, mine is below 100 usually in the 90s but does drop into the 80s occasionally. Especially when I go from sitting to standing. I’m fairly well practised now in standing up slowly. From settee to settee arm then stand up. I’m also on maximum bisoprolol 5 mg twice per day and on middle dose entresto due to my low blood pressure. Give Dapa a go as I’m sure you’ll be ok on it and there are benefits for us hearties.

[GGiraffe in reply to Curlyman83]

Im on entresto 49/51mg x2 per day, having a blood test today before going up another dose, was put on dapa 3 weeks ago with no problems at all, my problems was when i first went on entresto & bisoprolol 3.75mg took about a week to settle down, i did take advice from hf nurse to try tablet at night helped within a few days 👍🏻

[Humbie64 in reply to Putterguy]

Thanks Putterguy. That’s great advice

[Caravan-lover]

Hi Humbie64,At the age of 54 (June 2020) I was diagnosed with HF & Dilated cardiomyopathy EF <33%, I am on optimised medication:

Furosemide 1x40mg daily

Eplerenone 1x 25mg daily

Ivabradine 1x 7.5mg twice daily

Sacubitril 97mg/ valsartan 103mg 1x twice daily

Dapagliflozin 1x 10mg daily

Lansoprazole 1 x 30mg twice daily

7mths after diagnosis my EF had increased to 54% ( was told normal EF range approximately 60%) was very pleased with this good news….. however I do get very tired & breathless. In March I had to wear a cardio memo machine which showed I also have unsustained LVT.

Hope this info helps. 😊

[Humbie64 in reply to Caravan-lover]

Thanks Caravan-lover. That is really helpful. Well done on increasing your EF. I will have to keep working on mine