Dilated cardiomyopathy diagnosis

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.

Sadly I have made no progress since that post. I thought I was going to go to Mayo and have a biopsy of the left side of my heart to hopefully figure out what might have caused the patchy damage to my heart but it is risky and not all my doctors are in favor of it. There is a belief that I might have something like sarcoidosis which could be keeping me from responding to heart meds. Please I would very much like it if you shared what has worked for you as I am always looking for new possibilities. Thanks.

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.

I was diagnosed with idiopathic dilated cardiomyopathy caused by an acute event in "all likelihood, caused by a virus" thispast December. I had cardiac cath that showed an EF of 10-15 and an echo that showed an EF of 20. I had a follow up echo at 90 days that still shows an EF of 20....so no improvement in my pumping ability. I suffer from chronic fatigue. My normal/baseline blood pressure is low so there is medication my dr cannot give me because it will push it too low. I take spironolactone, Lasix, 1/2 tablet bisoprofopol in th am and 1/2 tablet Entresto at bedtime. My dr said he would see me in a year and do another echo at that time. I need some answers regarding the long term if I don't improve and I am wondering if this awful constant fatigue is my "new normal". I have been going to cardiac rehab(very difficult but I am trying) for the past 6 weeks and I also have recently had an ICD implanted. I am scared, depressed and only have my husband to talk to about all of this and I don't want to upset him anymore.
I am other than my cardiac problem a healthy , non smoking, non drinker 68 yr old female.can anyone in similar circumstances share their experience with me?

Hi Friend I just joined this great forum and am still learning details of others' situations. I hear you on being scared and depressed. So glad you let others here know this! I'm sure your husband is scared too, but maybe is trying to be strong and doesn't always know what to say. I had terrifying cardiac and pulmonary issues after a flu, but had already been through damage from serious illness. The fatigue is horrendous! Hang in there it can take a long time. Aromatherapy really helped me while I was in pain, could barely walk without fainting, etc. I made sprays with things like grapefruit or lemon and would feel so uplifted.
I know none of this is clinical and doesn't necessarily answer your questions, but I am so grateful to be alive, I became much more aware and appreciative of every single thing that brought me joy, and I'd tell others too! I will pray for you and others here that our hearts are renewed with JOY! Take wonderful care of yourself my Friend!

Welcome to Connect @fr0ggie and @jms7.
I moved your messages to this existing thread about dilated cardiomyopathy medications because I thought the discussion might also interest you. I'm also hoping that @murryone and @mohenpek will return and share their updated experiences.

@grachilds too asks if being extremely fatigued is the new normal. It's important to talk to your doctor about this and let him or her know that this is leading to feelings of depression. Depression and heart disease is real. We're here to talk about it.

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.

Welcome back @murrayone and thank you for this amazingly comprehensive first-hand account. It is priceless to hear from someone who has been there.
Thank you