DCM question

[amesy]

Hi,

This is my first post having been diagnosed with DCM (EF of 25%) in November. Its been a massive shock and I'm still feeling a little sorry for myself as at age 52 this wasn't part of the plan....

I've been told that the underlying cause is very likely to be genetic and that, even after a planned ablation to fix an arrhythmia, I'm not likely to get the EF above 35% and will likely need an ICD as the heart will remain significantly impaired. I'm 2 months into the heart failure drugs and feeling slightly better but the EF is unchanged.

What would really help me to know is the extent to which the underlying cause of the DCM, which appears only treatable by medication (or ultimately a transplant), will continue to attack the heart. At the moment I don't have any kind of feel as to whether the heart will deteriorate and, if so, at what rate. If I knew that it would stabilise or even improve that would help my outlook massively.

Any thoughts greatly appreciated.

[Cherrelleford]

Hey.I was diagnosed with DCM in April last year. Massive shock as I'm 35 with 2 young children. I have no underlying cause. My EF is 10-15%. I have some medication but had alot stopped as body didn't agree with them. I had an ICD fitted in October, it scared me a little but I have more energy and carry on with most things as normal. I have been to see the transplant team and am due to see them again soon. It's all confusing and scary at times but taking to the heart nurses really does help. My community heart nurse is amazing and has been a massive help especially with keeping positive. I hope you get the answers you need.

All the best x

[amesy in reply to Cherrelleford]

Thank you very much for your reply, appreciated. good luck on your journey.

[wischo]

I was diagnosed with DCM in 2012 at age 61 EF 40/45%. I was put on the usual Ramipril, bisoprolol and one or two I could not take. Started walking 3 to 4 miles every day and went back for lots of checks. Eventually they said it was very mild and my EF came up a bit. In 2019 I was feeling a bit tired when walking on holidays and seen my GP who referred me to a private cardiologist. He gave me a stress test and I explained to him about the DCM diagnosis. After the stress test he done an angiogram during which he told me there was a restriction on my left coronary artery. He put in a small stent and 3 months later done an echo which showed EF at 55%. He maintaines the coronary restriction caused the low EF. Not sure if he is right or not but still walking my 4 miles a day and feel good.

[amesy in reply to wischo]

Thank you Wischo

[Wire57]

Hi Amesy

I was a 61 year old who thought he was in good health, attending the gym every other day for two hours each time, scuba diving, hill walking, not drinking or smoking. Then out of the blue in Oct 2019 I had a cardiac arrest and only survived because the shopping centre I was in had bought a defibrillator earlier that week, I came out of a coma five days later to be told I had DCM and an EF of 10% with severe heart failure.

I had a CRT-D implanted and was put on the standard meds, two years later I have an EF of 35% walk an average of 8.5 miles a day and feel better than I have in the last twenty years, and enjoy every minute of it.

I have always been a positive person but you don’t look on what you can’t do anymore but look at all the new exciting things you haven’t tried yet. My only limitations now are I can’t scuba dive or play a brass instrument anymore (only because the cardiologist said not to)

I know it comes as a shock but take one step at a time listen to the specialists, listen to your body and do not google.

Take care and I look forward to reading your posts over the coming decades.

[amesy in reply to Wire57]

Thank you Wire57

[DaveTR]

Hi,

I was diagnosed with DCM back in 2003 at the age of 33. As you say, it does come as a shock and natural to feel sorry for yourself. It certainly didn’t form part of any plan I had. With time I have been able to come to terms with it.

My DCM was proven to be genetic. Testing showed a change in the TTN / Titan gene. This has meant that my family are able to request testing to see if they carry this ‘change’.

I started getting arrhythmias and after a couple of cardioversions was given an ICD. It has saved my life countless times with corrections. Most corrections I was unaware of.

Up until your diagnosis your heart was over working and couldn’t cope. Now you have your diagnosis and treatment has started it should take the pressure off. I would hope your heart will improve with the help it is now receiving from the meds. It did for me and many others.

What ever you do, don’t ask Dr Google. He / she / it said I would be in a box 14 years ago!

Take all the help you can get and follow the Dr’s orders.

I really do hope things improve for you.

[amesy in reply to DaveTR]

Thank you very much for the reply. 33 is very young indeed to have that diagnosis. Glad your ICD is helping too.