Living with Heart Failure Long Term

[Pikaia]

Hi all,

I'm adjusting to the new me, with, to quote, 'extensive scarring and fibrosis' in my heart (from pneumonia). This has also led to atrial fibrillation, although I've knowingly had this only twice in two years. Multiple tests and cardiologists later, I'm now on 5mg Ramipril (ACE inhibitor) and 5mg Bisoprolol (beta blocker).

I seem to have settled on my medications, with a steady resting heart rate in the mid 50s. I'm in my late thirties and I have young children. I want to ensure I'm as fit and healthy as I can be, for as long as I can be. My cardiologist thinks I can get back to exercise, but only up to 'moderate' intensity, i.e. so I can still hold a conversation. I'm writing to ask about other people's experience in this situation (if we assume we can ever compare these things). My questions really are about exercise and condition progression.

1. If you suffer from heart failure, what exercises do you do?

2. Have you found anything that slows or improves heart failure (other than the drugs?), e.g. type of exercise, foods to avoid etc.

Finally, I'm finding myself quite breathless at times, unrelated to exertion. Indeed, often when I'm just sat down. Is this the heart failure, and so the drugs should be increased, or the drugs (so they should be changed or decreased)? How can one tell?

As always, thanks for any advice.

[Lezzers]

Hi, my husband has HF, do you have a HF nurse? If not, ask your GP/cardiologist if you can be referred. They are a godsend for sorting out your medication, questions etc. I would tell your GP/cardiologist /nurse bout your breathlessness, you may need your medication adjusted. Also, ask your GP for a referral to your local gym, normally they will have an instructor who specialises in exercise for people who have a medical condition & will write an exercise programme for you. Lastly, there is a foundation charity called Pumping Marvellous which is a fantastic site for information about HF. They also have a Facebook group which is a closed group for HF patients, their families and their carers. It is a fantastic group for advice & support & can't recommend it highly enough. Hope this helps you, feel free to contact me if you wish.

Regards Lesley xx

[Pikaia in reply to Lezzers]

Thanks Lezzers for your advice and link to Pumping Marvellous xx

[Andrew1966]

Hi, I was on Ramipril for about 2 years, with 2 GP's wanting to stop increasing the dose when my blood pressure was down to 112 over something (Ramipril at 5 mg), the specialist kept wanting to get the Ramipril up to 10 mg, I kept feeling worse, even a cardiologist that specialises in heart failure said I should feel like that but didn't come up with that it might be the meds, I complained when I went to my GP for a med revue, he then stopped the Ramipril and I feel a lot better, starting on candesartan now, so that was 2 GP's a registrar and consultant didn't pick up on meds

[Prada47]

I was switched from Ramipril to Candesartan due to the Ramipril cough. I have H F and I also can get breathless for no apparent reason even when sitting down or talking. In fact yesterday talking to the Heart Specialist Nurse I became a little SOB , and she just said that should improve on Monday after opening your LAD. Lets hope

Regards

Frank W

[Helen_BHF]

Hi Pikaia , you might find these links from The BHF useful. There's lots of information on managing heart failure including diet and exercise...

bhf.org.uk/publications/hea...

bhf.org.uk/publications/hea...

bhf.org.uk/heart-matters-ma...

Hope this helps

[Pikaia in reply to Helen_BHF]

Thanks Helen_BHF !

[seagull66]

Hi ,have you heard or good web site called "the earth clinic" have a look around there,they say apple cider vinegar is great for lots of issues.good luck.

[Horselover665]

I have hf, left ventricular systolic dysfunction and dilated cardiomyopathy and long qt diagnosed may 2015. I am in ramipril, bisoprolol, spironolactone, bumetanide plus a few others as now have kidney problems due to heart meds which causes severe gout which started last jan/Feb, I still get breathless on exertion getting up my stairs now is hard work and I can’t walk a distance I finally gave in last September and bought a mobility scooter so I could get out shopping. I am still not back to normal and am processing I never will be I have to get used to different way of life. I would like to try swimming. I struggle with exhaustion every day. I have a loop monitor fitted in my chest which has given me the confidence that hospital can pick up any episodes of arythmia now. As good as the nhs have been they don’t gVe the time now so I’m trying a local support group to. Although it’s not great it’s reassuring to hear others also get breathless. When I’ve spoken to gp they’re not surprised. I’m no longer under heart failure team after 12 months or so they said they’d done everything they can to help me get better. I just try to take life at slower pace and not beat myself up I can’t do things like I used to, the additional health conditions I have as a side effect of the heart failure and meds are the things that have tipped me over the edge so I now have depression. Since this happened I had sleep apnea, kidney disease stage 3b and severe gout. All Dec jan 2016 17. So if anyone has tips on how they deal with the depression please let me know. Thankyou