Adjusting to heart failure and dilated cardiomyopathy diagnosis

[Jezza85]

Hi everyone, just need to get this out, it’s hard and I’m in limbo with getting a psychologist/Counsellor to talk to,

On 9th April I was diagnosed with heart failure and dilated cardiomyopathy, I went for a stress test and got as far as the echocardiogram and was told my heart was weak, was admitted into hospital for 4 days, had a coronary angiogram to see if there were blockages in my arteries, no blockages, they don’t know why I have this condition or how long I’ve had it,

This is very scary, they said I can live a long life if I respond well to treatment, weigh myself every day for water weight, restrict fluids (includes watery foods) to 1.5litres a day, though dr google says the median life expectancy is 5 years, which is really upsetting me and freaking me out, I’m only 33, I want to live to my 40s and beyond, I have so much more I want to do, see, live for!

I also have type 2 diabetes, high blood pressure, pcos, depression, anxiety, agoraphobia, asthma, I was born with Congenital CMV, which caused hearing loss (no hearing in right ear but enough in left for hearing aid), I have a congenital deformation in the small brain part of my brain, I’ve been told eventually I’m going to lose all my hearing in my left ear and need cochlear implants, now the heart complications, it’s so overwhelming living with all this!

I have also lost 2 pregnancies, 1 of which was a stillborn son, I want to have children, i don’t want my last child to be in the ground, I want living kids, and I’ve researched yes you can have kids with these conditions (nurses and drs told me), but my heart has to improve as it’s very weak, they said I have to let them know if I want to ttc as they need to check if my heart can handle pregnancy, I’m really hoping they eventually give me the all clear within the next year or so,

It’s only early days living with this new heart condition, yes I’m scared but trying to remain positive, trying to stick to my new medication and lifestyle changes, I want to be able to live a long life and as normal as possible!

[Shar28]

Hello, it’s really scary when you’re diagnosed with a heart condition and it takes time to get your head around it. Firstly, don’t believe everything you see on Google. Lots of information is out of date, doesn’t apply to many people (because the demographics of people in the research) or plain wrong. I read that 5 year life expectancy too then found a report discrediting it because the study consisted of old people who have a shorter life expectancy due to their age. Your doctors know you and your conditions and are much better placed to guide you forward.

You’ve probably discovered the BHF website but have you discovered the Cardiomyopathy UK website? It’s so useful. Like BHF they have a helpline run by nurses who are really great to talk to, for medical advice and support. Here’s the link

cardiomyopathy.org

This forum is great for sounding off, ranting, asking questions and sharing your story. Others on here are really supportive and will doubtless be along in due course.

All the best for the future.

[Hidden]

I saw that 5 year thing too. It's Internet. Take with a dose of salt. My doctors told me a lot of people live for years. It's different for everybody. When I read that I got sad and angry. Still am a little. Talk to your doctor/cardiac nurse/and of course BHF

[Lezzers]

Hi, sorry to hear of your diagnosis & how scary it is. My husband was diagnosed with heart failure in 2012, he's certainly not going to die any time soon. Please do not Google anything about it as the info will be completely wrong, out of date or just not applicable to you. You will definitely get invaluable help & advice from this site, the cardiomyopthy site & another site called pumping marvellous which is for heart failure patients, their families & carers. They also have a closed Facebook page for support & advice, there are people your age & younger on it & pregnancy questions are often raised which hopefully will put your kind at rest. X

[Vivi2711]

Respected Jezza85,

Let me narrate my story in brief.

I am a male aged 60 years old asthma patient. All of a sudden during May 2018 suffered from severe shortness of breadth. Thought it was asthma as usual & took deiphylin, cortisone but didn't get relief. After a week went to a cardiologist and was diagnosed with severe dilated cardiomyopathy with an ejection fraction of 39%. CAG done with no blocks. Shortness of breadth, severe fatigue, loss of appetite, deep depression altogether occupied me. Sudden grief crept in. Many times I thought of committing suicide. The internet literature is too scary. During a review asked my cardiologist, how long shall I live and when my quality of life( becoming normal) will improve. His advice was, strictly stick on to salt/ fluid restriction, take medications regularly, attempt to walk daily & be stress free. If you follow this, within 6 months you will lead a normal life and will live upto another 25 years or more.

Many times I thought that my cardiologist was too optimistic in order to make me gain confidence while the reality is as dangerous as described in the Google.

Miraculously, with the blessings SHRIDI SAI BABA (MY ALMIGHTY) I swear to state that I became very normal after 6 months and now walking 45 mts a day. Iam on half salt but my taste buds have got adapted to it. My energy is back & all of a sudden depression was gone. However, I continue my medications and go by doctor's advice with a review for every three months. My ejection fraction has gone down from 39% to 36 % and now it is 33% but I feel normal and my Doc says everything will be OK shortly.

So all negative posts in Google are worthless and DCM differs from person to person.

I am 100%sure that if you are in the hands of a good cardiologist and if you follow his advice scrupulously, very shortly you will become normal and even the DCM will be reversed because age is on your side and fortunately you don't have any blocks.

I was like you struggling to survive, always on the bed going through Google to the extent of Google asking me solve a CAPTCHA every half an hour to prove that I am a human.

Never believe all the posts of Google, often be in touch with your friends & this community wherein, many have more complicated problems than us.

From my own experience I assure everything is going to be OK shortly with the blessings of ALMIGHTY.

With regards

[Love100cats in reply to Vivi2711]

.please read reply below to jezza as it was your reply that prompted me to respond.

[Love100cats]

What an inspiring post! Thank you so much. I'm not a young person but was shocked to receive the news that I had heart failure. My reaction was death awaits. But I'm following the directions, taking the medications and strengthening my faith in God. The only thing I can do little about is stress as my husband is very Ill. But I'm working on it. And I'm still here and like you have no blocks so it's all about heart function with 43% fraction.

[Vivi2711 in reply to Love100cats]

Respected Love 100 cats,

43% LVEF is amazing. Just short of normal values. Hope that you are active with some exercise as advised by your doctor. And I am very much confident that with the GRACE OF ALMIGHTY very soon you'll bounce back to complete normalcy & lead a long, long healthy life.

With regards