Results from scan. 36% ef. Previous scan in Jan 35-40%. no change since start Dapagliflozin/forxiga. Q. How do we improve ef rate?

[theonethatgotaway1]

39 yrs old. Had a suspect heart attack back in 2019 where my ef rate was 12% and was in ICU for 10 days praying for my life and coughing up pink phlegm. All the fun stuff of dying from heart failure. Luckily managed to pull through. Fast forward several years of meds and slow recovery. My ef bounced back up to 40-45% after a cadioversion that reset afib and entresto etc.

This had recently dropped down to 35-40% back in Jan and still sits around 36%. My heart is classed as moderatly impaired lv function. It has a large scar across 50%. Since starting dapa i do feel generally better overall but do get episodes of random chest pains, sharp ones. Tummy pains since starting dapa. Tiredness. Palpitations are common. etc.

My question is, how do we improve our already weakened/damaged heart, safely without compromising it and damaging it even further? What have you found that actually works to improve ef rate?

I do try to get as many steps in each day and have bought some exercise bands to try do light weights.

I was previously fit working out everyday so mentally I still want to run 5 miles a day and carry out weightlifting for fun but the trauma of it, has mentally scarred me from doing any form of exercise other than walking. How many steps should we aim for? Should we be pushing ourselves to be doing a real sweaty workout where our heart is clearly working harder or will this damage it further due to it being overworked during exercise.

[Autumn_Leaves]

It doesn’t matter what other people can and can’t do. Everyone has their own set of challenges, limitations and risks. The important thing is that you exercise safely. You might want to ask your GP about a possible referral to a rehab or physiotherapist.

[EU95PTM]

I’m sorry to hear about your heart attack and subsequent heart failure, it must have been a very difficult time for you especially at such a young age. Have you or were you offered cardiac rehab at all? I ask this as it was a game changer for me and for so many others. I had a heart attack and subsequent heart failure last year and I wasn’t confident to do any exercise at all until I participated in the cardiac rehab programme. It was 6 weeks of supervised exercise classes (low impact) in a group setting. I was monitored closely so felt safe to challenge myself and it really boosted my confidence to do more. Now I use my smart watch whenever I’m exercising so that I am working within the target range set out for me.

Everyone will have different limitations and many of us have had to adapt to a “new normal” whilst a few others can do more than they were previously. Maybe speak to your GP to see if you can be referred to a specialist rehabilitation programme.

[Penoir53]

Hello there. I'm sorry you are struggling a bit with 'next moves'. My stats and drugs are pretty similar although heart failure via a different method. I feel your pain. I struggle with drug related low bp and do 10k steps and cycle tentatively on an electric bike. They recently halved my carvedilol to up my Entresto from baby dose. It feels like the drugs are meant to be game changers but for other people doesn't it?. 😂 Defo talk to your cardio and gp about rehab. I didn't have a heart attack so wasn't offered it and was v grumpy about that! In terms of upping your EF, the cardio tells me that sometimes the EF slips and a year later it's back up with zero changes/difference. But I'm v number focused too. Low bp or hr can make the body stress a lot but the cardio can defo twiddle with things and will if you keep on at them. Keep going though and advocate for the best quality of life. I had cycling on my goals and kept going on about it. Being told there was nothing stopping me doing it didn't help. An ebike did. Low bp and hr is a funny thing as it stops you doing things that you might be ok with. And no surprise that Fear receptors very high alert. Sending love xx

[tonylongman]

Hi

I have a similar history to you with damaged heart muscle and low EF, I see your on Entresto which I am on (started about 3 years ago) this has massively improved my EF which has crept up from low 30s to 50 over the last three years. I'm on a 97/103 dose. My cardiologist mentioned at my last meeting that there are other new drugs that can now be prescribed if Entresto stops being effective so you might want to ask about these. At my last echo cardiogram the specialist was a bit more engaging than usual and he indicated that my heart, while still showing damage and scaring , was much improved and the higher EF was a measure of that improvement.

I also think your question about exercise intensity is a very good one, given that current general health advice seems to highlight the benefit of very intensive levels of exercise it does beg the question of how this advice applies to those with heart failure. To date I can find no medical advice on this but am seeing my cardiologist shortly and its on my list of questions. At present I exercise regularly and cycle a lot with upto 4 hour sessions but try to avoid hitting max heart rate though have pushed a bit harder recently on the back of the medical results.

[theonethatgotaway1 in reply to tonylongman]

Thanks for the replies. It seems we have a similar diagnosis with the scaring on the heart, heart failure. Can I ask how old are you please? I am hitting 40 next year but I was previously fit. It has kinda stopped me from exercising on a regular other than waking and some light exercises. I do want to gym it again but not sure if this will have a negative impact with heart failure. I am rnot seeing the cardiologist till next May now. Seems he has moved it to an annual meeting which I guess is a very good sign

[uzininemm in reply to tonylongman]

You are doing the right thing asking your cardiologist, I asked mine something similar when I said I fancied trying the rowing machine and the cross trainer at the gym. His words were go for it but keep out of the red (on my smart watch).

[theonethatgotaway1 in reply to uzininemm]

Do you think exercise can improve heart function for heart failure patients?

[am1875 in reply to theonethatgotaway1]

Exercise helps.

[am1875 in reply to tonylongman]

Cleveland Clinic is the #1 heart hospital in the U.S. This procedure has been approved for awhile in Europe. There’s a clinical trial being conducted now in the U.S. Looks promising . Google: ALIVE Trial Offers Hybrid Approach for Ischemic Cardiomyopathy With Residual Scar…Cleveland Clinic

[Keder]

Thanks for posting this.

After my first HA I had an EF of 45% which left me feeling tired but normalish life resumed and I did a course of rehab which helped.

After about six months I felt fine to the extent that I was able to erect a large polytunnel with no ill effects.

14 months after the first HA I had a second which was very violent and thought that the end was in sight (quite literally). Now the MRI-mearsured EF is 15% and I feel that life is over - I am 73. I manage to potter in the polytunnel but my heavy gardening days are over. Decided not to do rehab this time as I feel discussion would be more helpful than exercise.

I'm very pleased for you that your EF has improved so much. I would say listen to your body and do as much exercise as you are comfortable with. The rehab team were emphatic that exercise is essential but with warm up and cool down periods. Your GP might refer you to your local rehab team.

[am1875 in reply to Keder]

I don’t see mention of Entresto or Dapa. Have these not been prescribed? All the best.

[Elsabounre]

Has your Cardiologist suggested an ICD...I know someone who was at EF 12..with enlarged heart and LBBB..after insertion of ICD..heart is now normal size..EF at 60...and lives a normal life..with some heart meds of course

[theonethatgotaway1 in reply to Elsabounre]

That's brilliant. They have mentioned it at the start but they are reserving that further down the line.

They said since its above 30 that its currently fine and stable. Things look stable and just to review every 6 months.

I am on the middle dose of entresto and it took my a long time to get used that dose. So now I seem OK on this dose I might mention upping that to the higher one

[Anon2023]

hi. I think a lot of people can relate to what you are going through. I know that I can. I’m on the top dose of entresto, Dapa, spirolactone and 10mg of bisoprolol. My EF has improved to 53% according to a perfusion scan but then it showed 43% on an echo a month later, which is where I started. These scans all have a margin of error. I get really hung up on the numbers but the cardiology team tell me that symptoms are more important than numbers. As for exercise, I feel like I’m wearing lead boots, I’m so tired and I also get the stabbing pains you mentioned. I know that I am grieving for my old life and what I used to be able to do. I’m now trying to change my focus from thinking about what I can do, rather than what I can’t. It’s a huge adjustment to this new reality that we find ourselves in but you’ll get there. If you haven’t already done cardiac rehab you should try it. It showed me that it was safe to exercise and nothing awful would happen if I pushed myself. I wish you lots of luck. X

[theonethatgotaway1 in reply to Anon2023]

Thank you for your kind words and I can relate to all of what you said. X

[am1875]

Hi. Ask your cardiologist about how strenuous you can exercise. You most likely still have 50 % good heart muscle to strengthen. I try to get in 10k steps a day except on the weekends, but more often than not I still get close on the weekends. I don’t do any light lifting but should. All the best.

[am1875]

Cleveland Clinic is the #1 heart hospital in the U.S. This procedure has been approved for awhile in Europe. There’s a clinical trial being conducted now in the U.S. Looks promising . Google: ALIVE Trial Offers Hybrid Approach for Ischemic Cardiomyopathy With Residual Scar……Cleveland Clinic

[am1875]

Several years ago my cardiologist at Cedars Sinai in Los Angeles advised me to occasionally, as in weekly, do more than usual. In other words, what I did was walk more briskly and further than usual. Maybe another mile. I usually get in 10k steps per day give or take. Of course ask your heart doctor before doing what I do. Do you think Dapa is the cause of your tiredness or palpitations? Did either start after Dapa? There are patient reviews on the ALIVE heart clinical trials in the U.S. You can also find videos of patient stories who’ve had this procedure of treating the scar tissue. All the best.