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Posts (3)

Mar 23, 2016 · Dilated cardiomyopathy diagnosis in Heart & Blood Health

Hi there @fr0ggie – I posted earlier in this thread and back in 2012. I can only share my experience, but in short i’m now 40 years old, had a TIA in 2010, was diagnosed with dilated cardiomyopathy and initially had an ejection fraction of around 22 which as of last month (Feb 2016) was measured as being 58. In effect, I have made what the world of cardiology would suggest is as much as a recovery as it is possible to make. My point being that I understand how you feel in terms of being scared and depressed as I felt exactly the same way back when. I also suffered from fatigue at the time and thought that was my ‘new normal’, but it wasn’t. I basically lost the ability to speak, walked to a hospital, and next thing you know my life had changed forever. It was quite scary and for the first time ever I realised I wasn’t invincible. With all that said, it has actually been a game-changer for me, and in a very positive way. There are many positives associated with your story in that you have been diagnosed (many people aren’t and that’s much more of a problem). You’ve had a cardioverter-defibrillator implanted which is again a great thing.

I am not a doctor, but for your information I take lisinopril, spironolactone, carvedilol and rivaoxaban (Xarelto) the latter of which removed the need for regular INR testing associated with Warfarin (Coumadin). I also take a calcium supplement. I am going to suggest that it would be a good idea to see your doctor again (or preferably get a second opinion) and not wait for 12 months to lapse. I can only share what worked for me, but my circumstances in 2010 sound very similar to your diagnosis in 2015 and it makes me question why the medication is so dramatically different.

I learned very quickly that there is no point in worrying or feeling down. I totally understand your feelings as the first few months can be exhausting and indeed extremely thought-provoking. For me after being diagnosed I spent quite some time trying to figure it out, and it wasn’t the best few months of my life but I have almost fully recovered now. I’ll always have cardiomyopathy and i’ll always have to take medication but this in no more than a mere inconvenience now. Ultimately, I feel lucky that I was diagnosed when I was (blessing in disguise).

Last but not least, I can’t emphasise the benefits of healthy eating and exercise enough. Cutting sodium from a diet is essential. My cardiologist recommended a book which I posted before – http://us.macmillan.com/thenosaltlowestsodiumcookbook/DonaldGazzaniga . As for exercise, you can only do what you can do, but going for a walk one day then walking just that little bit further the next day will help. Make a picnic and go on a day trip and just do something you enjoy. I’m glad you posted, as the emotional effects of learning life is going to be slightly different is not easy and is mostly underestimated.

For the first 12 months after diagnosis (and whilst still being exhausted, nervous, anxious) I went from being someone who ate out all the time to being someone who prepared every single meal, went on picnics, made sandwiches etc. Perhaps i’m just lucky (i am 100% Irish), but for me it was kind of like a fresh start and all the negatives were wiped out by the positives. You too are very lucky to have been diagnosed as you can manage your situation which is much better than not knowing (even though it might not seem like it just yet)

Hope this is of some help to you, and please remember that stress or worry won’t help you in any manner, shape, or form. Take care.

Feb 21, 2012 · Dilated cardiomyopathy diagnosis in Heart & Blood Health

Hey there – sorry yo hear that you haven’t made any progress. My story is not overly exciting or unusual, but in short, I had a TIA in August 2010, and as a result of being admitted to hospital, was diagnosed with dilated cardiomyopathy. I also had a-fib, which they got rid of through cardioversion. I was fortunate to have had really good healthcare and insurance provision, and managed to get treated on the cardiomyopathy programme at Stanford University. We are all different, but I completely cut sodium out of my diet, which means not eating out (or being very careful when doing so), and basically avoiding all processed foods. That was difficult to get used to in the beginning, and it shocks most people that I can now cook. There is a good cook book my cardiologist suggested getting which is…. http://us.macmillan.com/thenosaltlowestsodiumcookbook/DonaldGazzaniga

In terms of medication, I’ve been taking pretty low doses of warfarin, lisinopril, spironolactone, and carvedilol. (2mg, 5mg, 25mg & 25mg respectively.)

I’m now living in the UK, and the advice they have given me with regards to diet is completely different to that given in the USA, but most of my recovery was completed in the USA, so i still adhere to the advice I was given in California.

In case you weren’t aware, there is actually a relatively new drug called dabigitran which replaces warfarin, and which removes certain dietary considerations such as vitamin K intake, which can interact negatively with warfarin. It also removes the need to anti-coagulation monitoring.

Last, but not least, I found myself driving everywhere when I lived in California, but i now walk everywhere. (I live in London, so it’s easier not to have a car.)

I guess it’s important to remember that one patient is rarely the same as another, but that is my story thus far. I’m guessing I have been one of the lucky ones.

Feb 21, 2012 · Dilated cardiomyopathy diagnosis in Heart & Blood Health

Hey there – i’ve just signed up for the Mayon Clinic forums, and noticed your posting. I am 36, and had dilated cardiomyopathy diagnosed following a minor stroke. My EJ was as low as 23 and now sits at approximately 53. I have been taking the same meds as you, with the exception of metropolol. Instead of this drug, I take carvedilol. I see your post is from October, so hopefully things are better for you right now. If you want to hear my history, and how i’ve been able to get my EJ back up to semi-normal levels, i’d be happy to share.