Heart Failure Lft Ventricular failure

Hi there Maureen,

I too have HF and LVF - was diagnosed with dilated cardiomyopathy (idiopathic) back in 2009. At that time, I was very ill and we didn't expect for me to live beyond 18 months. I had an ICD implanted less than 6 monthsafter I was diagnosed and although recovery was slow, I gradually felt better and have been able to lead a fairly normal life since then. The last 18 months - 2 years have been up and down and my condition has deteriorated, but I'm trying to remain positive! I take ramipril, spironolactone, bisoprolol, digoxin, furosemide and bendroflumethiazide - the last medication was added after I was admitted to hospital earlier this year with decompensated heart failure. I had a lot of fluid back up, particularly in my abdomen and was on intravenous furosemide for 2 weeks and got rid of 11kg of fluid!

I wonder, do you weigh yourself every day? It's vital that you do because that way you can monitor any fluid that may be creeping in, then be seen quickly by your doctor, who can either increase your diuretics for a while or admit you to hospital to remove the fluid. After I was discharged from hospital last July, I was told to cut out all salt from my diet and limit myself to 1.2 litres of fluid a day. I'm on a very high dose of diuretics now, but they seem to be doing the trick and keeping me out of trouble. I'm also on the heart transplant waiting list - hoping and praying that a new heart comes soon.

Heart failure is a very unpredictable condition to live with. Some days I can forget I have anything wrong with me and other days I feel as though I am at death's door. Although I don't think we can ever get used to it, somehow we are able to adapt. I wish you well and hope you feel better soon. Let us know how you get on. :-)

Hello Ley, its so good to hear from some one on this site, I hope you are having a good day today , as that's what happens to me some days I feel like nothings wrong and some days its like I can't go on any longer. I must say that these few weeks I have been feeling ok, still can't do as much as I would like to, but I know this is some thing have to get used to. its very hard for me as I have always been a fit person and worked all my life, lost my husband 14 years and I am now 71 yrs but still trying to keep fit and want to be busy but this illness came out of the blue, was out walking one day 2 years ago and had TIA then went into AF went into Hospital 12 days could not get my Heart rate down it took 9 months of not being able to walk around my flat not even get to the toilet until they decided I needed this Biventricular pace maker also had to have a full Ablation, but still having Left Ventricular problems so keep suffering from Heart failure, I have been told that nothing else can be done just have to stay on the med. I am on all the same as you are except for the bendroflumehiasze as I am not retaining fluid only seems to be at night when I to go bed I cough a lot and have this awful thick stuff that comes up.. any how its lovely to her from you and I do hope things go well for you do not give up keep fighting.

Maureen.

Hello there Maureen and thank you for being so kind and getting back to my response and also for your good wishes. Living with HF is a fight as you well know and some days are better than others. The biventricular pacemaker certainly makes our quality of life better and many of our symptoms easier to deal with but sadly not all. I hope that you start to feel better very soon and your cough clears up. Have you tried sleeping with an extra pillow? Just a thought. Take care! :-)

Sorry to hear you are so unwell & hope you get a new heart soon. Are you a member of the Cardiomyopathy Association, you will find the details online. They have Heart Failure nurses you can talk to and discussion groups, a wealth of knowledge & lots of people in the same situation, with advice on how to cope or just chat over symptoms, moans etc

Hello Trikki Nikki Thanks for you thoughts, I must say that I am doing really well at the moment, and all my medication appears to be at the right level. I do attend clinic and have a really good team looking after me, so I am very thankful to them all.

I am so sorry for all you guys who are still having problems with your medication. You have to speak out t your GPs . Thanks again take care.

Glad to hear that you have improved & the meds have helped, i know it takes time and they symptoms of Heart Failure are really horrible and makes you want to give as you feel so ill, but with perseverance and support you can get through it and there is a lot more help available and treatments if we are waiting too long for a transplant.

Glad it was good news.

I agree with HF you can be up one minute and down the next. I was diagnosed almost 2 years ago. They

Have now decided that I need an implantable loop recorder fitted, d day is Monday, dreading it, but must be

done, hope they get a result as I am fed up with not always being able to enjoy myself. One good thing is

That I give up work on 31 July this year

Hi, im from Malaysia, and just has an open heart surgery due to valve rapture. Surgery was quite success. and im now on medication (bisoprolol, before this was Ivabradine), just feel uncomfortable because heart rate irregular. this make me feel scared. I am now so worry about my health.