It was in May 2018 I was diagnosed with dilated cardiomyopathy with a LVEF of 39%. Started with carvedilol, spironolactone plus toresemide, losartan with potassium, atorovastatin with clopidegril. CAG done and no block. Extreme fatigue, shortness of breadth while walking 10 steps, loss of appetite, constipation and depression encircled me and I was desperate to think even to end my life. I am 58 years old who quit smoking before 4 years and stopped drinking since May 2018. Life style changes of cutting down salt intake with a fluid restriction of 1 litre/per day was imposed right from day one. A review within a month reduced my LVEF to 36%. My interventional cardiologist promised me that there'll be significant improvement within 6 months and advised me to guard my energy and of course not to give up walking daily. Accordingly, in a slow pace for a brief period of starting with 20 minutes a day I continued to walk. Over a period of time I GAINED MORE ENERGY and was able to walk 30 mts a day. Out of experience I understood that exercising gives you more energy and the energy gained makes you to exercise more which results in strengthening of the heart muscle. Exactly after 6 months all the symptoms have vanished but I still undergo reviews and continue medications. A recent echo revealed that my LVEF has gone down to 33% which is quite unbelievable since I have no symptoms at all. I now walk 4.5 kms per day at an average pace of 10 mts/km and feel no tiredness or short of breadth. A review last week had revealed that my BP is 90/60, oxygen level is 96% pulse rate is 70 and lipids/ sugar level are below normal. Creatinine level has gone up by 1% from 1.5 to 1.6 and the doctor says daily use of the diuertic of 10 mg would be the cause and reduced its dosage to 5 mg twice a week with 10 mg for the remaining 5 days. He is also of the considered view that the medications with salt/fluid restriction and mostly the EXERCISE is the cause for no symptoms and the LVEF will also improve in due course.
Any expert guidance is most welcome please.
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Vivi2711
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Hello, my husband is in htown s mid-50s and has Dilated Cardiomyopathy too. When he was diagnosed 2years ago his EF was 10-15%. It improved over the following months to 25% by drug therapy...an ACE inhibitor, Spironolactone, Bisoprolol. His fluids intake was restricted to 2 litres a day at first then the restriction was removed as blood tests showed he was too dry. (He was initially on Furosemide too but that was stopped before the drinking restriction).
He enjoys exercising and keeping busy because it makes him feel better but his limits are much lower than before. One of the Drs in hospital when he was first diagnosed said it’s important not to overdo things but it’s just as important to do enough. So he has to listen to his body and rest/nap during the day. It’s a challenge to get the balance though. He seems to have a certain amount of energy each day and when it’s gone it’s gone.
Expert guidance is best obtained from your Cardiologist or the nurses at Cardiomyopathy UK. Their website is fantastic and their nurses are wonderful, as are the BHF nurses on their helpline. I’d suggest calling Cardiomyopathy UK to discuss your situation and they will guide you as to the next steps.
It’s not easy to get to grips with, in our experience at least. Well done in taking charge of your condition and congratulations on the progress you’ve made. All the best for the future.
Vivi my understanding of Heart Failure is the Lower the Number the more severe is the Heart Failure !! 39 to 36 to 33% is going down. 55% ish is given as the Norm. Is that your understanding ??
I do agree with your statement. But my doctor says it may take some more time to heal and improve. I am with no symptoms and my BP, electrolyte reading like sodium, chloride, pulse rate, blood oxygen level, etc are normal. A little bit confused over the downgrading of my LVEF. Is it possible to have no symptoms at all when LVEF is going down gradually? I don't have answers. And I was told that to consult BHF nurse I'll have to tag my post which I don't know how to do. And since I am from India I cannot afford to make ISD calls. Don't know what to do
Hi Vivi, yes it is entirely possible to have a low EF with no or few symptoms. Equally, some people have an high EF but are very symptomatic (sorry if that's the wrong word to use!) in addition to this forum, there is a closed Facebook group called pumping marvellous which is a support group for people with heart failure, their families & their carers.
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