why though?

[Jackabee]

so, I started with an EF of 30 and now, a year later, it is 60 ( on Entresto highest dose, Bisoprolol, Lanzoprozole, Atrovastatin, Spironolactone, Clopidogrel ) but I went swimming yesterday (20 slow lengths) then couldn’t get up for my ballet lesson this morning. Surely, with a near normal EF, I should be able to function normally? I am 70.

[Tos92]

Hi Jackabee

Could it just be a combination of medications and the swimming you did yesterday that resulted in you being extra tired this morning?

Tos

[Jackabee in reply to Tos92]

I suppose so. I am trying so hard to get back to where I was before diagnoses 14 months ago. HF was an incidental find when I went into hospital with vertigo. Sometimes though, despite all the medication, I feel less able than I was before. I can’t seem to pull myself together. Last week was a bit busy I suppose. I went to two sewing classes and a knitting class, helped lift and lay shingle in the garden over two days and then went swimming. I suppose before the meds I could have just upped and pegged it one day so at least now I am a bit protected.

[Hidden]

You have done amazingly to get your EF near normal level with the drugs you have been given to take.

It sounds like you could do with having a chat with your Dr or better still your heart team about having your medication reviewed, because unfortunately it sounds like you are suffering from some of the recognised side effects of the drugs.

Hopefully once this is done it will give you a little more of your old self back.

I really admire the way you have treated you illness and you are an inspiration to us all with how packed you are making your social time.

Take care

[Jackabee in reply to Hidden]

it’s probably just denial making me carry on. I am not inspirational. Doctor won’t see me for a review until after my next birthday ( January) and the cardiology team are busy with more poorly people. Cardiac nurse I met once by my request when I came out of hospital. I have been requesting regular liver and kidney function blood tests off my own bat but I quickly realised that I am on my own. . All I can do is try to stay as healthy as possible.

[Anon2023 in reply to Jackabee]

hi. My gp wasn’t doing regular blood tests so I looked up the nice guidelines for all of the meds that I am on and asked when my next reviews for these were. If you look at the bnf/ nice guidelines it says;

Monitoring drug treatment

When initiating ACE inhibitors, ARBs and mineralocorticoid receptor antagonists, serum potassium and sodium, renal function, and blood pressure should be checked prior to starting treatment, 1-2 weeks after starting treatment, and at each dose increment. Once the target, or maximum tolerated dose is achieved, treatment should be monitored monthly for 3 months and then at least every 6 months, and if the patient becomes acutely unwell.

When I pointed this out suddenly I was offered blood tests in addition to my annual review. Sometimes you’ve got to be a bit pushy even though it goes against the grain. X

[Hidden]

You can ask for a review anytime not just when they say so, and as far as I am concerned I find you extremely inspirational , please take care

[Georgemac27 in reply to Hidden]

I think Jackabee may be referring to her annual health review for a long term health condition which GPs must do.

[Hidden]

Yes I agree, but why wait if you have a problem? its more down to us now to push our cases, keep quite and they will pass you by for someone that speaks up. That's why I find it so important to support others that need that push to find answers.

[Silvertail]

It's good that your EF is back to normal. I've heard many people say they don't feel as well as a normal EF would suggest. Do you think it is your meds? I know bisoprolol causes fatigue in some people. I have one or two days a fortnight when I feel very fatigued and keep falling asleep while at my computer or trying to watch TV. Last echo my EF was normal, too - 53% to 57%.

[Deejay62]

Hi Jackabee congratulations. Just keep listening to your cardiologist, take your meds and doing what your doing. Your strength should return. Also speak to your cardiologist they should be able to explain why you’re still feeling tired after exercising. All the best.

[Ewloe]

my EF was 40% after my heart attack. Then went to 46% after 12 months. Now nearly 2 years later I’m sure it would have increased even more. I’d always been fit and continued to exercise and build it up. I can do more exercises than a lot of people without a health problem but get me walking uphill I become a snail. It’s still improving as I’m working on it but snail I am. And I get totally wiped out at times.

I’m taking all the medication and am I believe fit but the muscle damage is still there. Medications don’t take that away they just make your heart more efficient at dealing with it.

[fishonabike]

i am in awe of your activity levels, as someone which a chronic condition which limits my daily activities i look on with envy at others who can do what i can't

however, have you considered that your heart clearly has a problem and the medication can only do so much? entresto has helped to improve your ejection fraction, but it has not cured whatever caused it to drop in the first place. You have not clarified your diagnosis but i'm guessing a type of "heart failure" which affects the ability of the heart muscle to pump as well as it used to

you could simply be asking a bit much of a heart which has a problem - it might be helpful to ensure adequate recovery time between activities and this might mean slightly longer recovery than you used to need

the medications are a treatment which supports the heart, they don't cure the problem, sadly a normal EF does not necessarily mean a "normal" heart

[Jackabee in reply to fishonabike]

thank you so much. I feel that I need , permission to slack off in a way. Because the heart failure was found ‘by accident’ I am thinking that I should still be able to do what I did before they discovered it. I used to exercise but always felt worse rather than progressively fitter. The diagnosis explained why. My OH doesn’t want take my HF into account in our daily life really and is disappointed if I get tired.

[Jackabee in reply to Jackabee]

I think I am expected to get better which I suppose I have with the medication.

[fishonabike in reply to Jackabee]

of course it's wonderful that the medication has helped you feel better, but it has not made the heart failure go away - it's a bit like having a crack in a wall caused by subsidence, you can fill it with polyfilla (or whatever) and paint it over and it will look fine, but it's still there and unless you can stop the subsidence it will get worse in time

i'm sorry that you feel you need permission to slow down, and i know that is a tough hurdle - i had to accept that my body would never let me do what i want to a long time ago, but i had an OH who understood and helped me

rest and recovery are really important in allowing your body to restore your resources, but learning to stop and let your body do that is also important - i hope you can find a way of helping your OH to understand your situation and how he can help you both adapt - has he read any of the info available from Cardiomyopathy UK the BHF? maybe try leaving it lying around...???

[Blackwolf_7619]

It could just be the medication. I take bisoprolol ans it literally makes me feel like a dead weight! At 70 though, you are doing amazing! Props to you!