Medication

[MelB51]

Hi all. In 2015 I was in a coma for almost 3 months due to Legionnaires disease and during that time, I was in multi organ failure. I came around and worked hard to get back on my feet (literally!). Then, in January 2016 I was diagnosed with heart failure. I am now on extensive medication but I still find it hard to walk far, and it is worse even with a small incline. I would think that if the medication was correcting the problem, then I should be more or less normal In terms of activity without becoming breathless. Anyone any suggestions? Thanks.

[stevejb1810]

Difficult to respond to this in any meaningful way. What medication are you taking? They maybe contributing to your breathlessness - Beta-blockers are known for it! Talk to your GP and Cardiologist and see if a different cocktail will work better for you. Whatever you decide, don't suffer in silence - keep asking questions

Steve

[laura_dropstitch Heart Star]

I agree with Steve. I know from personal experience that the side effects of heart failure medication are very similar to the symptoms of heart failure. You would hope that you'd be on the optimum balance after two years, but it may be some further tweaking needs done. I think there is a balance/compromise to be made with medication, in terms of how willing you are to suffer side effects now in order to protect your heart in the longer term, but your symptoms/side effects sound like they're having quite an impact on your day-to-day life. Definitely time to request a review of your medication, I think.

All that said, there is no cure for heart failure and I see the medication as a way to manage my condition rather than fix it, the main purpose of a lot of my meds is to reduce strain on my heart so that it lasts longer. I'd class myself as doing very well (for a heart failure patient!) but I do experience symptoms of fatigue and breathlessness. Like yourself, even a tiny incline makes a huge difference. So you do have to be realistic about what the medications can achieve, but it may be there's a more suitable/effective treatment for you and you should definitely ask your doctors for their advice.

Good luck with it all x

[Prada47 in reply to laura_dropstitch]

Hi Mel,

Laura has summed it up, No cure for Heart Failure but Good Management helps to alleviate some of the associated problems. It may be worthwhile just to ask, could your breathless symptoms be coming from Angina rather than the Heart Failure diagnosis. I know from a personal perspective after starting on Isosorbide my breathless symptoms did get a little better which prompted the Cardiologist to investigate a little further !!!

Regards

Frank W

[MichaelJH Heart Star]

With heart disease the problem is that medication can help relieve the symptoms but not really cure them. I have CVD and angina. Medication helps stop the angina but doesn't really allow me to walk any real distance - I am awaiting a bypass. It is always worth getting medication reviewed. I have been on statins for some years and had to have then changed because of side effects. My anti-anginal treatment was varied a few months after diagnosis.

[MelB51 in reply to MichaelJH]

Thanks to everyone who took the time and trouble to reply to my queries. I do understand about heart failure, ejection fractions and so on but I think I wanted to get opinions on whether I should be bothering the doctors or not. If my medication could be 'tweaked' for example.

Also, nobody has ever told me how this may progress. Will I get steadily worse? What are the options, if any? What is the prognosis? I have friends who dismiss it saying that their mother/gran/auntie or whoever had heart failure and lived for 15 years or more after diagnosis, with no apparent problems! Others shake their heads and seem to indicate that I don't have too long left at all.

It all seems so unfair after my battle with Legionaires disease and the coma and everything! I want to fight this too!

[laura_dropstitch Heart Star in reply to MelB51]

The treatments available now mean that people with heart failure are living longer and longer, but I think you still meet people who take an old-school view of it and act like we're all doomed. I've found medical professionals reluctant to give answers about life expectancy, but I think it's genuinely because they can't answer it. My consultant basically says stable is good and they aim to keep me stable for as long as possible. Right now I am stable and there's no reason to think that will change any time soon...but equally it could change at any time. I really don't want to need a heart transplant (very nearly went down that path a couple of years ago and found the whole thing terrifying) and I know there are no givens with it (major risks involved plus shortage of donors) but I do console myself with the fact that transplant is an option if things do get worse, at least until the age of 65, I think? So I try to see reaching a pensionable age as a possibility, if not a likelihood. And I do think new research and treatments will improve our chances within our lifetimes. Heart failure is always described as progressive (and sometimes that freaks me out) but I don't think the path of progression can be determined at all. I realise that doesn't really answer your question, but I think it's as close as you can get to an answer probably.

[MelB51 in reply to laura_dropstitch]

Thanks. Your response reflects my feelings exactly. Life doesn't come with any guarantees I know. I hope that you do see your retirement and in the meantime, all we can do is be grateful for every day that we ave to spend with people we love.

[Heartlady1]

I would definitely go to check it out with your doctor. Things can change with Heart Failure so it is always worth checking if you are struggling.

Although It's true heart failure cannot be fixed there are routes they can look at if things start to deteriorate further. For example a pacemaker helped me as my heart failure worsened.

As others have said it may be a medication tweak required.... but it is definitely worth getting checked out again. Also one thing I was not aware of until joining this forum is that you can ask to be part forward for cardiac rehab. It's not something I was offered... but when I asked about it they agreed to put me forward for it. I have just started on this course and it's been amazing already.

Hope all goes well at doctors. Karen

[Nanny72]

Had the same problem. Diagnosed with heart failure by gp. Waiting for cardiology appt 12 week wait. Chest pain and collapse at home. Hospitalised and aortic valve replacement three days later. Misdiagnosis by gp.

I was finding even small inclines difficult and was finding myself sorting out ways to walk without going up any slopes. Even the stairs were a problem.