AF, EF 29%, severely dilated and impaired LV function. Advice please.

[Anabel21]

Hi,

Following my previous post regarding my husband’s new HF diagnosis, we now have a letter from the HF nurse with details of his condition. It says he has severely dilated and severely impaired LV function. His EF is 29% ,mild to moderate MR ( I don’t know what this stands for) , dilated RV with impaired function. To me, who knows nothing about this subject , this sounds serious but he is not showing any symptoms. He is so anxious about it that he does not want to read anything about his illness. I don’t want to show him the letter as it will make him very upset/ down. Is it as bad as it sounds?

[daveofpensby]

Hi Anabel21 if he is as you say showing no symptoms tell him to try to get on with his life. I personally have heart failure with EF of 34 % I’ve not long been fitted with an I C D I just get on with life I retired but still complete a fair bit of manual work in the garden do a lot of walking. I look at it in this way you’ve got what you’ve got get on with it and enjoy your time. When first told I had HF I was devastated but over the last 12 months I’ve come to terms with it good luck

[Yasyass in reply to daveofpensby]

Hi how long ago did u have icd fitted and did u have any problems with it wish I was like you with positive attitude I know we can’t change anything th has happened but I try to carry on life as normal but know that my heart isn’t normal it’s difficult to explain how I feel but I do feel sad as my ha was caused by meds I was taking and yes I am grateful to have survived the ha but feel that I live in fear even more than before

[daveofpensby in reply to Yasyass]

Hi my first HA was 26 years ago I was given 24 hrs to live then I survived that, it took me a few months to come to terms with it then.

I was marching along living life until 2 years ago then I had my 2nd HA and my thoughts then was I survived one HA I can survive another and that’s the way I live my life otherwise I’d be a nervous wreck every pain or ache I would be thinking I’m having another HA . I had ICD fitted six months ago last February, no problem at all oh it aches a bit now and then but hey ho what’s the alternative? I’ve said this before the ICD is like a guardian angel on my shoulder baby sitting my heart and it’s there ready and waiting to intervene if anything goes wrong, and so far I’ve not needed it to.

Try to just get on with your life there’s a whole lot of living to do don’t spoil it by being worried all the time you’ve got what you’ve got there people out there a lot worse off than you. That’s it sermon over for today Good luck and take care

[Yasyass in reply to daveofpensby]

Thanks for your kind time in replying it’s so good to hear good positive things take care

[SarahJLD]

When is he next due to have a cardiology consultation? Has he got any further investigations due? Cardiac MRI or exercise tolerance test? Does he know what all his tablets are for? Some of them may well be to improve his EF.

[Anabel21 in reply to SarahJLD]

Hi, he has a phone consultation with the HF nurse in 6-8 weeks. He is going to have a CT angiogram. He is on 7 different tablets including a water tablet and blood thinner. I’m sure some of the others are to help improve the EF. He also has AF but his heart Rate does seem to have come down but maybe not into a regular rhythm. I have no knowledge of heart failure but the diagnosis sounds very serious and I can’t believe that he doesn’t have any symptoms. Or maybe I’m wrong, he used to get tired but he works very long hours. He had no problem doing long walks during lockdown but was taken into hospital with suspected meningitis ( it wasn’t) . I agree with Dave, get on with it , especially as he doesn’t feel unwell, but the HF nurse is just so negative about it.

Thanks for the reply.

[SarahJLD in reply to Anabel21]

Maybe you need to speak to the nurses on the BHF helpline as the HF nurse shouldn’t be so negative at all. I also find the helpline and support groups at Cardiomyopathy UK really helpful. They both will certainly give you some support as a spouse.

BHF also do a couple of booklets about HF. They have them for other conditions too, I’ve found them informative. Although he might not to read them you might find them helpful to understand.

Have you still not had a proper letter from his discharge? You should have one for your records. The HF nurse one should be supplementary.

[Elaine2020]

Hi anabel my function is also 29% just newly diagnosed it’s a lot of info to take .. sending love

[Yasyass in reply to Elaine2020]

Hi mine is 31% and because I am symptomless find it a lot to take in mine due to previous ha cardio suggested a icd but since the virus I haven’t heard from the hf nurses or the cardio so in a way I’m wondering do I need a icd I am alwaz worrying not knowing what is going on or if possible my condition could improve I feel as thou I can do things but feel afraid I may make things worse I am in early fifties

[Anabel21]

Thank you. I hope everything goes well for you too x

[Ignoramus]

There is a lot of hope: if a cardiologist constantly manages his condition, utilizes medicines like ACE inhibitors, and your husband maintains a healthy lifestyle “Reverse Remodeling” where HF improves is very possible ncbi.nlm.nih.gov/pmc/articl... I’ve even had an elderly cat recover from DCM after receiving similar treatment from his vet.

And even if it doesn’t, reverse, ventricular assist devices are a great help and let people live normally.