Newbie - new diagnosis

[Eastwood25]

Hi everyone, im a newbie here, was admitted to hospital thursday only came in for an echocardiogram as an outpatient . Doctor has just been and told me that i have a weak heart 17% ejection level has said its dilated cardio... which my mum passed away from, im on medication which he said could help increase this. Im due to have an mri next 6/8 weeks to give more idea of what theyre dealing with. I dont have the usual symptoms only get a little breathless now & again(as asthmatic put it down to that). Doc said to take things easy and wait for mri results. Any one on here been in this situation to give me a bit of positivity? Scared isnt the word,i have 4 children youngest is only 10, im only 47 yeamy mum passed away with this aged 66. Any help very gratefully received.

[Shar28]

Hello, welcome to the forum. My husband has Dilated Cardiomyopathy too. It’s a huge shock when you receive a diagnosis like this and we found it takes a bit of getting used to. It must be frightening for you, with your mum passing away from the same condition. As time goes on you’ll find everything settles. Your meds will take effect and the MRI will clarify things further, so you can have a way forward.

My husband is older than you, he was 54 when he was diagnosed after emergency admission to hospital a 2.5 years ago. His EF was 10-15%. His GP taught he may have a “small cot on the lung or something like that” as he was asthmatic and had had repeated chest infections over the winter. He was put on drugs in accordance with the NICE guidelines ie ACE Inhibitor, Betablocker and a diuretic which in just a few months increased his EF to 25%. His latest Echo in April showed his EF has increased to 40-45%. He can do so much more than we thought he’d be able to and is otherwise well, although he does get tired more easily than he used to.

Some people with asthma find they can’t get along with beta blockers. My husband had a Spirometry test which showed he isn’t asthmatic at all! He’d been mis-diagnosed 20+ years ago. He’s fine with Bisoprolol. You may be referred for the same test to check your asthma is actually asthma but otherwise you could ask your Cardiologist about it.

Have you discovered the Cardiomyopathy UK website? If not, I can recommend it highly. There’s loads of up-to-date information and heaps of support. They can pop an information pack in the post too - we found it easy to dip in and out of and share with family too. Here’s the link

cardiomyopathy.org

They also have a nurse-run helpline and they’re so kind and helpful.

There’s also lots on the BUF website and their nurse-run helpline too.

I hope you have your MRI and the results/ review soon and things settle down well for you. There are others on here with DCM and with young families and i’m sure they’ll be along to support you. In the meantime, if you have any questions, want to rant, need some support then please shout out - it’s what the forum is for.

Best wishes to you and your family.

[Eastwood25 in reply to Shar28]

Thank you so much for your kind reply, it has certainly gave me some positive hope especially as your hubbys initial EF is very similar to mine, im pleased to hear there is a very good chance of it improving on this.

Yes it was a huge shock, i knew the gp suspected something was up but was careful as im a real panicker, was blown away when i was told i had to stay here especially as i had only come for an outpatient appointment, but the NHS have been fantastic so kind & very patient with me. Im pleased to hear your hubby is doing well. Doc seems to think ive had it for a while and my body has got used to it thats why im not really showing any signs for 17% EF. Was in a&e in may with what i thought was my asthma but suspect it was prob this condition as had small amount of fluid on lungs which has cleared up thankfully, do find it a bit strange they didn’t investigate this condition at the time.thank you for taking the time to reply to my post. X

[Eastwood25]

Many thanks for your reply, yes i agree re advances in medicine, im pleased to hear you are doing ok. Was a huge shock as you can imagine being admitted on the spot after my echocardiogram,Sunday now and im still here at the mo, but heart rate has lowered with the medication. X

[cowparsley]

That must be extremely worrying for you and all I can say is take notice of the doctor`s advice and try to take it easy.I know that will be difficult with three children but they`re old enough to understand and help.Your mother died young from heart problems as did mine but just remember how far medical science has come since then.Now you`ve joined the forum you will be amazed at the severe conditions people have overcome with determination and our wonderful NHS so don`t stress, I`m sure all will be sorted.My very best wishes to you.Jen

[Eastwood25 in reply to cowparsley]

Thank you so much, it really helps hearing all the positive stories advice. X