The
Cardiomyopathy
Association

Advice from other people living with cardiomyopathy

• Being diagnosed is better than blissful ignorance.  Now the condition can be treated and managed and you can get on with your life.

• Seek advice and guidance from a specialist unit and don't settle for anything less!  Be strong and don't be afraid to ask questions.  Remember you are not alone!

• You are not alone. Others who have it understand. There is so much help and support available from the CMA. 

• Very few people end up needing a transplant. Most people can live long and normal lives with this.

• Keep positive. Keep appointments and work with your team to get the medication that is right for you.

• Keep yourself informed. If you have any doubts about advice, or if there's something you don't really understand, don't be afraid to ask questions. Find out the pros and cons of any proposed treatment.

• Cardiomyopathy is something to live with like an invisible friend. You will have good days and bad ones. Always follow the medical advice and take your meds.

• Recovery takes time. Be patient and get lots of rest.

• Surround yourself with the loving support of people who have and are walking the path of living with cardiomyopathy. Thanks to the CMA for teaching me this in my darkest hour (ok, it's been more than hours!) of need.

• I'd say the important thing is to understand any medication you're prescribed, to know about its side effects as well as its benefits and why it has been prescribed to you.

• Don't believe everything you read on the internet.  A lot of the information is dated, scary and wrong!

• Initial reaction is doom and gloom but the latest drugs available to dilated cardiomyopthy patients have changed the outlook to enable most of us to live a long and normal life.

• Never give up.

   

   

Dedicated to Damian McLoughlin, who died age 20 of cardiomyopathy. This site is supported by Damian's family and friends.