Non ischemic dilated cardiomyopathy

[Elaine2020]

Hi guys. I’m 36 and recently been diagnosed with non ischemic dilated cardiomyopathy the function is 29% I’m still learning about this, is there anyone else who would be in same boat? Many thanks

Elaine

[Milkfairy Heart Star]

Hello Elaine2020

Welcome to the forum.

I don't personally live with your condition however those who do I am sure will be along to share their experiences with you.

There are a couple of other support groups where you might find further support.

Cardiomyopathy UK

cardiomyopathy.org/

And Pumping Marvellous

pumpingmarvellous.org/

I hope you are able to connect with other people soon

[Vivi2711]

I am a sufferer of non ischeamic dilated cardiomyopathy for the past two years aged about 60 yrs now.

Initially it was devastating since I was engulfed with sudden shortness of breadth, excessive fatigue, loss of appetite, constipation and depression.

My EF was 39% at the time of diagnosis and within a fortnight reduced to 33%.

I was obese (90 kgs) & alcoholic till then.

Administered with carvedilol twice daily, spironolactone plus toresemide (diuertic to flush out fluids) clopidegril 75mg, atorovastatin 10 mg & losartan 25 mg all once daily.

Day by day I became very weak with heavy fatigue. Used to wake up suddenly gasping for breadth after 2 hrs sleep during night time(they call it as paroxysmal nocturnal dyspnea) which scared me a lot.

Angiogram was done & no blocks.

Read almost all the related posts in Google which were quite scary culminating into the theory that the patient has to suffer till his death with these symptoms.

One day, I just questioned my cardiologist, " kindly offer your esteemed opinion on my morbidity & mortality"

He smiled and said, don't be obsessed by Google.

Reduce your salt intake to 1200 mg a day, restrict fluids to 1 litre per day. Try to walk slowly on a flat surface daily to the extent possible. With all these life style changes, medications and quitting all bad habits, I can assure you that within 6 months you will become asymptomatic & could live upto another 20 years.

Made up my mind and took a challenge that I will win and started walking slowly but daily. Gradually, I was able to walk 30 mts daily(CAUTION: PLEASE PERFORM EXERCISE WITH THE APPROVAL OF YOUR CARDIOLOGIST AND NEVER ON YOUR OWN)

Started Maintaing a log to record my weight daily after waking up in empty stomach after a visit to rest room.

Able to see that I am loosing weight by 200 gms daily.

After 6 months I have become almost asymptomatic and walk briskly now but still on restrictions & medications.

In these two years what I learnt is if we take it as a challenge we can win this.

Hence, don't worry and I reiterate that you shall also become normal very shortly with the blessings of ALMIGHTY

[Elaine2020]

Thank you guys really appreciate it very much!! I have no idea why I have it they think genetic or from a virus or something so I’m not sure just learning as I go .. iv started healthy eating and walking on flat surfaces to try and be the healthiest I can be. I’m super tired ..

[Pikaia]

Hi Elaine2020 , welcome to the club! I have non-ischaemic dilated cardiomyopathy too!

I suffered a bad bout of pneumonia about 4 years ago which led to diffuse scarring and a mildly reduced EF. Four years on, with a few change of meds and a reduction in running about and sport in general, and I'm back onto a quasi-normal even keel. I was 36 when I had pneumonia so I appreciate what you're going through. Happy to talk to you about adjustments, just PM me.

[Elaine2020 in reply to Pikaia]

Thank you so much! Thanks for the info! Has your function increased now?

[Pikaia in reply to Elaine2020]

Yes, thanks to drugs and light exercise a lot has improved. My EF is now on the border of being normal. Long may that continue! Good luck, you'll find a way to cope with this.

[Shar28]

Hello. My husband was diagnosed with Dilated Cardiomyopathy (DCM) 3 years ago at the age of 55. It was a complete bolt out of the blue and very scary. His EF at the time was 10-15% but meds brought it up to 25% after a few months where it stayed for some time, including after having his Aortic Valve replaced in 2018. His Echo last year showed EF 45%. As normal is 55%ish, he’s doing really well.

Life isn’t the same as before because it’s not the same old normal but his new normal is good. He’s slowed down and can’t do everything he did before, he takes his time and works around stuff to achieve what he wants to do and modifies his activities so it’s manageable. Motorcycling still features heavily, as does going to the gym (in non-Covid times). He took Ill Health early retirement and that’s what really boosted his EF - in combination with getting 2 little puppies who are great for relaxing with.

It takes time to get used to your condition so be kind and gentle with yourself. Note down questions when you think of them and don’t be afraid that any question is silly or stupid. Ask your GP/Cardiologist/BHF nurses/cardiomyopathy UK nurses but not Dr Google. Feel free to shout out on here for support or even for a rant if you want.

Best wishes to you and your loved ones.

[Babsben]

Hi Elaine,

How are you? I was reading your story. I've recently had an angiogram and the cardiologist thinks it's been viral as I have no family history. (diagnosed with low ef 6 weeks ago) I have mild dilated left ventricle and it goes on to say my cardimyopathy is non ischemic in origin. I'm baffled nothing ever seems clear in there letters. My ef is 30% I've been put on Medication and changing my lifestyle. I'm assuming its called dialted cardimyopathy. Im pretty much asymptomatic.

How are you getting with general day to day life?

Thanks

Lynnx