Newly diagnosed with cardiomyopathy

[Velena]

Hello everyone. I was diagnosed with cardiomyopathy last week and am pretty shocked and disappointed as I had open heart surgery (aniloplasty) to repair my mitral valve in June 2018 and my cardiologist has always said I was doing very well at my regular checkups since then. Last week's FEVI was 41% which has decreased from 63% one month after my operation, which seems quite a large decline in a relatively short time and I am worried in case it indicates the condition is progressing rapidly. I don't have any symptoms other than slightly irregular heartbeat, no breathlessness at all and I do exercise regularly. I don't smoke, am not overweight, don't have high blood pressure and have lowered my cholesterol levels by taking pitavastatin (h4ad had low cholesterol all my life until I hit the menopause and after that it just went up and up for no apparent reason, it was only by going to a cardiologist for a checkup because of the cholesterol problem that I discovered I had mitral valve regurgitation as I had no symptoms at all from that either). That was diagnosed in 2015 and the cardiologist monitored it for 3 years until he recommended surgery. I've been reading up about cardiomyopathy online (which my husband says I shouldn't) and have seen medical articles saying that 50% of people diagnosed with cardiomyopathy are alive after 5 years and 10% are alive after 10 years which doesn't seem like very good odds to me - I'm 64 and was hoping to make my 3 score years and 10 at least. I've been taking bisoprolol for 4 years, low dose aspirin since my surgery and the cardiologist has just put me on 5mg enalapril in addition. Can anyone please share any experience about how the condition progresses and can I do any more to manage it effectively?

[Shar28]

Hello Velena and welcome to the forum. I do sympathise with you and your husband. My husband has Dilated Cardiomyopathy so we’ve been through the process of a shocking diagnosis, learning about it and coming to terms with it. And it’s not bad. By way of background, his EF was 10-15% upon diagnosis, brought up to 25% by medication and now 41% after a new Aortic Valve and retiring from work.

Firstly, your husband is right...don’t believe everything you read on the internet. A lot of it is out of date or when you actually go behind the headlines, doesn’t apply to you. For example, old studies on cardiomyopathy were on men a lot older than you with comorbidities that weren’t filtered out. Instead, look at reputable sources like BHF, NHS and cardiomyopathy UK. Here’s the link to the lattercardiomyopathy.org

When you consider a normal person has an EF of 55-65%, your EF of 41% isn’t too bad at all, although I appreciate it’s a big drop from your previous 63%. And EF is important but not the only measure of heart health.

Your cardiologist will guide your forwards, but in the meantime the usual eating healthily (look at the BHF Mediterranean diet guidelines and recipes) and exercising according to your own parameters but generally heart rate no more than80% of 80% of 220 minus your age, according to my husband’s cardiologist . (Ie 220 minus 64 = 156 x 80% = 124 beats per minute).

We found the cardiomyopathy UK website really useful so I’d recommend looking at that. And their nurse helpline is fantastic too. Please try not to worry too much but be positive for the future instead.

All the best to you and your husband.

[Velena in reply to Shar28]

Thank you so much for your response, I'll certainly look at the information sources you have mentioned. It's reassuring to know that EF can be improved by medication (sorry I used the term FEVI, I live in Spain and the medical terms are of course in Spanish, FEVI is fracción ejecucción ventricula izquierda!). I speak Spanish but it's not my first language and it's very helpful to have resources like this forum to turn to. I'm glad your husband's treatment has had so much success and wish you both all the best for the future.

[Hidden]

I was diagnosed with dilated cardiomyopathy with an ejection fraction of 18% when I was 46. EF improved to 25% with meds and good doctors and I have made it to 60 and did very well, continuing to work part time until a year ago. Things not so good at the minute but 15 years was a gift. There is no reason why you will not do as well, if not better. Being positive and planning for the future helps. Take all the support you can get and do all the usual, diet, exercise, etc.

[Velena in reply to Hidden]

Thank you for taking the time to reply, it's reassuring to know that you have done so well, sorry to hear that things are not so good just now and best wishes for the future.

[Wellington19]

I am 71 have had cardiomyopathy since 2008

[Velena in reply to Wellington19]

You have no idea how happy it makes me to hear that!

[FeetheBookworm]

Hi Velena, I also have HF and was diagnosed 4yrs ago when I was 61. I had terrible trouble breathing while on holiday in St Lucia although had been coughing up a lot of fluid for a couple of months before. When we got home (eventful flight as the Steward me on oxygen all the way home) I got an emergency app at the doctors that afternoon and was packed off to my A&E immediately. My EF was 17%, 3yrs later it was up to 43% and I was discharged to GP care.

Do check out the BHF site - they have lots of invaluable information and booklets you can download.

I was given a book ‘An everyday guide to living with heart failure. It’s invaluable and you can download it from the website. I will have a hunt and see if I can post a link.

I had to cut my fluid to 1 1/2 litres a day and cut out salt. But soon told to add salt in as my levels tanked. I don’t like the taste so cook with it but add v little or none to cooked food.

Otherwise it’s basically a Mediterranean diet, careful with fats and watch the liquid in initial stages.

I take Losarton, Spirolactone, Bisoprol daily and Ivabradine twice a day.

Hope you feel better soon Velena, but it may take time. Mine took a couple of years.

Fiona

[FeetheBookworm in reply to FeetheBookworm]

Here’s the link: bhf.org.uk/informationsuppo...

[Velena in reply to FeetheBookworm]

That's the strange thing, Fee, I don't feel unwell, I never did even immediately before my valve repair surgery when the mitral regurgitation had reached the severe stage, and the problem had been diagnosed 3 years earlier so I'd probably had it for a long time already. I felt a million times worse after the surgery, took a good 6 months to get back to normal. Don't have any symptoms or feel unwell now, apart from slightly jumpy heart rythm at times. At my latest cardiology appointment I was told to eat a low salt diet, I don't eat a lot of it anyway but will be extra careful. Sodium levels are OK according to a recent blood test. I have discovered there is a lot of sodium in enalapril tablets though, so that could be why I need to cut down on it in my diet. He didn't say anything about limiting fluids though. I've been eating a low fat diet for the past 30 years anyway. When my mitral valve problem was first discovered, I said I might as well have been a chain smoking, alcoholic, junk food addict couch potato all these years, for all the good a "healthy lifestyle" had done me! Thanks for the recommendation of the book, I will try to find it online.

[FeetheBookworm]

I don’t have to restrict anything anymore but as I said I’m not fond of salt except when adding it to cooking. So as our output levels are similar your doctor may not feel telling you to restrict salt is necessary. Mine was only for about 3 months after diagnosis when it went so low, and I got a phone call telling me to add it back in.