Dilated Cardiomyopathy is very traumatic...just need all the help I can get.

[Chibuzo]

Hi everyone,I am Nnamdi Chibuzo.. I started experiencing palpitations since 2014...It wasn't until February,2021,that I was finally able to afford a cardiac MRI that diagnosed me with DCM..all those years of neglect and mismanagement, I believe, dealt extensive damage to my heart... Well, here I am. It's going to be a long journey..I saw this community online and decided to join, hoping to get a little succour, help and advice. Wishing us all the strength to keep on keeping on. Stay safe.

[vinixxx]

You need a healthy lifestyle habits and you will feel better with the time.There is a lot of information in here.

[Chibuzo in reply to vinixxx]

Thanks a lot.

[WardijaWardija]

I'm guessing you are not in the UK, the fact you say you waited so long to save up to get a cardiac MRI and an eventual diagnosis of Dialated Cardiomyopathy.

As I understand it, there are several causes of DCM including genetic, viral infections that affect the heart and several others . . .

DCM I believe, affects the lower chambers of the heart. The wall of the left ventricle (LV) is thicker than the one on the right and is the main pumping chamber.

As the LV becomes enlarged (dialated) the muscle wall becomes progressively thinner and weaker therefore affecting its ability to pump normally and send blood at high pressure to all parts of the body.

I think its probably fair to assume in your case, that by not having had a way earlier diagnosis and appropriate treatment/s, it seems inevitable that further damage is very likely to have occured.

To manage this condition, lifestyle needs to be looked at, to ensure it is healthy and balanced. Along with this, drugs and or implanted devices such as ICD's, Pacemakers, are the first port of call.

Regular testing and monitoring of your condition will need to be undertaken on a regular basis by your cardiac team, and you may be referred to an genetic screening unit.

I have Hypertrophic Cardiomyopathy, another variant of this disease, commonly referred to as SCD, Sudden Cardiac Death Syndrome and it does exactly what the name suggests, and with NO pre-warning . . .

This is a progressive, ongoing, and incurable condition, managed in the first instance by a cocktail of oral life-long medication's, and, where appropriate, lifestyle management.

As this condition progresses over time, it may be further managed by a series of surgical invasive procedures, such as Ablation surgery or the insertion of a pacemaker or ICD, as deemed appropriate by the Cardiologist.

Where ever in the world you live, you really need to obtain urgent medical attention WITHOUT ANY FURTHER DELAY ❣👨‍⚕️🏥👨‍⚕️❣

Best of luck 🙂

[Chibuzo in reply to WardijaWardija]

Thanks.I am from and reside in Biafra, Nigeria. From recent evaluation,no cause was found. Hence, categorizing it as idiopathic Cardiomyopathy. From my cardiac MRI,both ventricles are now affected leading to reduced biventricular function. It's very intense so much so that I hardly get out of the house. My heartbeat is so turbulent that,by mere looking at me,you can see my body moving due to the 'earthquake-like' beats. My body temperature is CONSTANTLY HOT. You say you are burdened with SCD,so sorry to hear that. The cardiologist I see now prescribed Oral Carvedilol and Lisinopril, which I have been on for almost 3 months now. The problem here in Nigeria is lack of appropriate medical facilities and the cut-throat costs where you eventually find them(few places, though). All I have right now is hope and patience, coupled with the long term medications. All the same, life can be really unfair. Thanks, though,for reaching out to me. Be safe.

[WardijaWardija in reply to Chibuzo]

Hi Nnamdi Thanks for your reply. I wasn't overly surprised to read your comments as to how difficult life can be in Nigeria, I have been aware of the 'igbo problem' for many years and know the country is still very volatile.

Our place of birth is pretty much a random lottery, being born in the UK, I realise that I am very fortunate in many, many ways, especially in regard to having immediate access to free health care when ever needed.

I was left feeling very humbled after having read your post, knowing you had to wait so long before even getting an initial diagnosis.

I'm pleased and relieved to hear that you are now getting access to the cardiac support you need, and receiving treatment (medications) for your specific condition.

You are so right, life can, and is, for many people, very unfair. Thank goodness our Hope can not be taken away from us.

I wish you all the very best for your continued "heart journey" and know that members of this forum are always around to offer help, advice and support as needed by a fellow "Heartie" in need. Take care.

🙏 🙏 🙏

[Chibuzo in reply to WardijaWardija]

Thanks,Wardija. The encouragements and words of succour mean the world to me. I can't possibly begin to tell you how comforted I am to find a community that feels my pain. Thanks, again.

[Chibuzo]

Thanks a lot... I know better days lie ahead.

[Chibuzo in reply to Chibuzo]

I am just 28, though. Never even scratched life.

[Silvasava]

I was diagnosed with DCM last year at 74, I believe it was caused by a virus I had a couple of years ago. I wasn't told it was DCM until I saw a different cardiologist earlier this year. I have not had any information on how to manage my lifestyle and I must admit everything I read makes me feel I will only have a few years left. I am taking a variety of meds and I'm very breathless and lethargic fairly frequently. My heart nurse has been supportive but apart from tweaking my meds to see if there is an improvement there doesn't seem to be anything else I can do to help myself. In 2 years from being very active, gardening, sailing I feel I am an invalid and a burden. I try not to get upset but it's very difficult when this has come out of the blue. I know I am grateful to be alive but at the moment it just feels like an existence rather than a life. Sorry for the pity party

[Chibuzo in reply to Silvasava]

Hi Silvasava,I share your pain and I am sorry for this burden. I am just 28. I have been experiencing constant palpitations since I was 21. I was just diagnosed in February of this year. What baffles me is that no cause can be found for my case. It beats my imagination. Now,both ventricles of my heart are affected. I stay alone all the time. It's going to be a long, torturous journey. It really an existence,not a life.

[Thanksnhs]

Hi I was diagnosed at 58 with dilated cardiomyopathy, but it was actually arythmogenic cardiomyopathy, It was caused by a faulty gene I had no diagnosis until I collapsed and therefore no treatment at all, every day was a struggle, I needed a heart transplant which I had successfully last year, you have been diagnosed at a young age and there is lots of treatment and new ones coming along every day that can really help I hope you can be treated with them them, take care char

[Chibuzo in reply to Thanksnhs]

Thanks a lot. But I stay in Nigeria and the options here are very limited. Does being diagnosed at an early age mean the Cardiomyopathy can be reversed?

[Thanksnhs in reply to Chibuzo]

Hi the EF can definitely be improved with meds and lifestyle changes, I don't know what drugs you have access to but I was on entresto which has helped a lot of people, diuretics to help with fluid retention and bisoperol, all can help heart failure massively, I was untreated for 58 years and lived a reasonably normal life, two children full time job at one point an evening job as well, holidays abroad and a good social life so I can imagine with treatment a transplant might not have been required char

[Chibuzo in reply to Thanksnhs]

Thanks. The cardiologist prescribed Oral Carvedilol and Lisinopril which I have been on for almost 3 months now. I have no oedema or fliud retention issues except frequent urination and high body temperature. No oedema,no shortness of breath. Just the constant palpitations and urination. The Lisinopril really helped me because my BP is now very ok. Thanks, again.

[Thanksnhs in reply to Chibuzo]

That's good I hope you continue to improve char

[Chibuzo in reply to Thanksnhs]

Thanks

[Chibuzo in reply to Thanksnhs]

Surprisingly, though,my cardiac MRI revealed that my left ventricular ejection fraction,as at February,was 49% and the RVEF was 45%,as against 50-60% for a healthy heart. I will have another 3D Echocardiogram when I am through with my current 2-month regime and when the funds are available. Perplexingly enough,my EFs aren't too low but my heart beats as hard as hell. My sinus rhythm is ok but the contractions are really rocky and hard.

[Shar28]

Hello. Have you discovered the Cardiomyopathy UK website? They’re a charity and a brilliant resource for all those affected by cardiomyopathy and their families too. Here’s the linkcardiomyopathy.org

Best wishes to you and your loved ones.

[Chibuzo in reply to Shar28]

Thanks a lot

[Chibuzo in reply to Shar28]

Thanks, but I don't reside in the UK. I am languishing in Nigeria and don't see any means of optimizing the benefits the UK group offers. Thanks, though.

[DaveTR]

Hi,I was diagnosed with DCM in 2003 at the age of 33.

After 18 years I'm am still here

My DCM was found to be due to a faulty gene.

Initial treatment (Meds and lifestyle improvements) saw some recovery so there certainly is hope.

New treatment and drugs are coming out on a regular basis to help us with our hearts like Entresto and Dapagliflozin on top of the usual and well know ones.

You just need to do what you can do.

Stay safe.

[Chibuzo in reply to DaveTR]

Thanks a whole lot..you can't possibly imagine what these words of encouragement mean to me. It means a lot to me.. Thanks again.

[Chibuzo]

Thanks