So I had my first echo in 18 months recently, and was hoping to see an improvement in my 34% EF (as measured by CMRI, Jan 20) as my exercise capacity is very good and I remain essentially asymptomatic with LVSD/HF. I was disappointed to see that the result was 35-40% - which I regard as ‘no change’ due to the margin of error on an echo vs. CMRI.
Having been on the top dose of Entresto for 12 months, I had high hopes for an improvement, but I guess it could be worse. Many will say ‘EF is just a number, it’s your symptoms that matter’, but it is definitely the case that my treatment (Entresto & ICD) has been overwhelmingly led by that magic number.
This result is making me wonder if my level of exercise (5k cross-country run and sensible weight training every other day) is actually counter-productive ie. adverse remodelling is taking place to compensate for the demand I am placing on my body, and nullifying any reverse remodelling (improvement) from the Entresto.
I’ll obviously be asking my cardiologist this at my follow up in Jan, but wondered if this resonates with anyone here?
Hi Jonah. I am expecting my first echo in 8 years this month and also interested to see if there is an improvement on 33% then recorded. No changes in my medications since discharged. I was initially told by a specialist cardiac nurse and physios that I should exercise to whatever I felt was my capacity and have done ever since. My 'new' cardio vascular limits peaked after about 2 years of regular exercise and haven't dropped since so I am convinced that exercise is the answer to making the best of your new limits. My muscle bulk and strength is better than before my incident and BMI dropped significantly to 20. I will probably post something if I have any significant improvement in EF recorded this month.
Thanks - it’s really encouraging to hear you are still so active 8 years on! All the best for your echo and keep bagging those Munros (although probably not until Spring now!)
Thanks Jo - I fully agree and dread the idea of cutting back on my current exercise levels. Stay well!
Hi, This definitely resonates with me, as I'm on a similar track although I'm about 12-24 months behind you. My EF as last measured was 30% but I mostly have no symptoms. I just had my CRT-D implanted, have just started taking Entresto and am now doing more exercise than at any time in my life (under the guidance of an excellent cardiac coach). Like you I'm investing a lot of time and effort in exercise and other lifestyle changes in the hope that I can improve heart function and will be disappointed if there is no change a year down the line. However I even if my EF doesn't improve I have little doubt there are many other benefits to the rest of my body and my mental health. So that is all good as long as it isn't making the heart worse!
At least your EF moved in the right direction even if its still within margin of error. To be honest if I get that much 18 months from now I'll be pleased I think. Do you have support from a cardiac coach or similar? Have you been given guidance on the right heart rate band to be sustaining during cardio exercise (like your running)? The level I've been given to work at is markedly below what my top output is.
Hi edplayer- thanks for your reply. It’s great to hear you’re feeling well and getting stuck into the right level of exercise.
I was very keen to get back into exercise right after my ‘widow maker’ (partly driven by a sense of denial at my new circumstances) and went through cardiac rehab, which was really helpful in building confidence to get back out there. In rehab I was working to a MHR of 119, and once I ‘graduated’ that was upped to 130. Some 12 months down the line, after ICD implantation I was surprised to be told by my cardiologist that my new upper limit was 150, so not far off the MHR for a ‘normal’ person my age!
Notwithstanding this advice, I do keep my HR under 140 on runs, which still allows me to shuffle up some steep hills, but I do wonder if this is too much even though I feel fine. I was interested to read one of your previous posts where you mention a medic’s explanation that a ‘larger’ heart means you can cope better while exercising with low EF. That makes sense mechanically, but it describes the kind of adverse remodelling (compensation) that could ultimately be damaging as the muscle becomes overstretched.
I’d love to hear more about your ‘cardiac coach’ - were they provided through the NHS or e.g. a private gym?
Yes, I think you are probably right about the larger heart due to remodeling not being desirable. My condition is non-ischemic dilated cardiomyopathy the cause of which is still not known, but I have had it since 2010 at least and I'm 50 now. For coaching I am working with CP+R which is a private outfit but very good (although too soon to judge by actually results in terms of EF). I have recently been told I could get NHS cardiac rehab also and I may yet try this as going private can be expensive of course.
Although CP+R are based in London I live in Worcestershire so I get two coached led training sessions a week via Zoom which work really well, although you do need to buy some relatively inexpensive kit (blood pressure monitor, HR monitor, weights, TRX, bands, 2 device set up for Zoom etc). In addition I do 2 sessions of cardio on my own which are reviewed by my coach. My coach is really experienced and highly qualified and really on her game. She really helped me get back to training after the CRT-D implant. After a procedure like that its so hard to know what is safe to do, but she gave me a lot of confidence to get started within a week with very gentle stuff but surprisingly quickly we got back to more challenging things. She is constantly adjusting the challenge level according to my circumstances and how I am feeling. Every session starts with questions about sleep quality, stress level, medication, energy level etc. HR is monitored throughout and blood pressure checked before and after. Plus there is also a Physiotherapist and Cardiac Nurse available to consult at any time both of whom have been very helpful when needed.
However I have since discovered that there are fair number of freelance cardiac coaches around the country many of whom are cheaper than CP+R but whether its an equivalent service I can't say. Part of the package with CP+R is a thorough quarterly assessment in London including a CPET exercise test and whole range of other things to measure progress. You get a ton of info from that. If you are lucky enough to be able to afford private help like this I recommend it.
Oh I mean to add: I've been given these heart rate guides by CP+R after my recent assessement: Steady State training: 130-135; Interval training: 145-150 for 4mins then <125
Elsewhere on this site I have read posts by those that have EF at 10% and still hold down full time job while others with EF below normal minimum EF of 50% struggle with certain HF syntoms as you state how you feel rather than numbers.Just before I was discharged after my OHCA 2 years ago and ICD implanted with EF of 34% with Moderate to severe Heart Failure dianogsis was visited by two Arrhythmia nurses to talk to me about Palliative/End of life care needs WTF!!!! After 6 weeks I hospital I felt I was making progress so as at today my most recent Echo was 37% next Echo due in two weeks time would be happy with EF at 40% but what is important is quality of life if not experiencing being tired, fatigued, breathless and more than your physical activities are keeping you well with Your HF and EF reading you are not far off being considered for heart transplant so keep up what works for Jonah72.
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Thanks so much for this - I will definitely look into CP+R. Looks like we’re in the same ballpark with target HR!
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