Heart failure

[HOLLYANNhopefulanna]

HELLO TO EVERYONE,I HAVE BEEN ON HEALTHUNLOCKED SITE REGARDING MY CKD ,WHICH I HAVE FOUND VERY HELPFUL,BUT TODAY I SAW MY CARDIOLOGIST AND AFTER HAVING AN ECHOCARDIOGRAM HE TOLD ME I HAVE HEART FAILURE,HE IS ARRANGING FOR ME TO HAVE APPOINTMENT AT THE HEART FAILURE TEAM AT A DIFFERENT HOSPITAL, I AM ALMOST BESIDE MYSELF WITH WORRY AS THIS ILLNESS IS VERY NEW TO ME NEW TO ME,HE IS ARRANGING ANOTHER ECHOCARDIOGRAM AND TO SEE HIM IN 6 MONTHS TIME,COULD ANYONE PLEASE ADVISE ME ON THIS AND TELL ME YOUR EXPERIENCES OF HEART FAILURE, I THANKYOU FOR READING THIS AND HOPEFULLY LOOK FORWARD TO ANY HELP AND ADVICE, I SHOULD MENTION THAT I HAD A PACEMAKER FITTED IN DECEMBER OF 2O22 BECAUSE OF ATRIAL FLUTTER, I ALSO HAVE CHRONIC KIDNEY DESEASE STAGE 3B, THE CARDIOLOGIST IS STARTING ME ON CARVEDILOL TABLETS,? AGAIN THANKYOU ,

[Buddy00]

try not to panic. The term heart failure can mean many things but essentially it means your heart isn’t performing as efficiently as possible. You don’t mention what tests the cardiologist had carried out to come to conclusion that you have heart failure.

[HOLLYANNhopefulanna in reply to Buddy00]

Thankyou so much buddy for replying,the cardiologist did an echocardiogram because I was feeling a little breathless,at first he thought it was fluid around heart,but at my appointment yesterday he said it wasn't fluid and said heart failure, when I get app at heart failure clinic I will apparentlybe prescribed possibly another 2 types of tablets aswell as the ones I am starting today,he then wants me to have another echocardiogram in 6months time to check it against the one I had in February, I keep worrying if I will still be around in 6months time? I'm not usually the type to worry but this has absolutely sent me into panic mode, I suppose it's the not knowing much about this condition,iv read up on it on the nhs website but it doesn't say anything re how long people live with it ect,I suppose everyone is different, thankyou once again for replying it's good to know that I'm not on my own regarding this,

[Qualipop in reply to HOLLYANNhopefulanna]

My mum lived with heart failure from the age of 26 to 69. She had eclampsia when pregnant with me which damaged her heart. Apart from finding gentle inclines difficult, she never had any treatment and made no changes to her life . She was told not to have a general anaesthetic so she had a hip replacement by epidural. There simply was no treatment back then. Heart failure is a horrible term. It doesn't mean it's going to suddenly stop, just that it's not as efficient as it should be. The medication should help a lot.

[HOLLYANNhopefulanna in reply to Qualipop]

Thankyou qualipop for your reply, it's good to have other people's experiences , the more I learn about this condition the better,I will keep everyone updated,best wishes

[Traveldreams]

I had a heart failure diagnosis after a routine blood test. Shock is an understatement. Had just buried my dad who had died from heart failure. 18 months later and I’m just returning to work after open heart surgery. Not everyone needs surgery- some are just given annual check ups. Easy to say don’t panic but the reality is not necessarily as bad as those words suggest. Take care x

[HOLLYANNhopefulanna in reply to Traveldreams]

Thankyou for ur reply I really do appreciate it,will keep you updated,best wishes

[Mitchum]

Like the other two replies I wouldn't worry too much. They are right in saying that the term used is worse than the actual "event".

With regards to CKD, I have had stage 3 for years along with possibly millions who are not even aware they have it. Just keep having it monitored but in the meantime don't let it ruin your life so long as it's all monitored. If it isn't, pester your GP!

[HOLLYANNhopefulanna in reply to Mitchum]

Thankyou Mitcham for taking the time to reply,I feel less anxious knowing that I am not on my own and getting information on this ,will keep you updated,best wishes

[Mitchum in reply to HOLLYANNhopefulanna]

It's a pleasure. Try and research methods of helping the kidneys to stop deteriorating and follow them eg: Vitamin D, exercise and kidney healthy foods. We can do quite a lot to help without drugs but, if it's necessary to take drugs, we can probably arrest the progress and prevent kidney failure.

[Mitchum in reply to Mitchum]

Meant to add, look on the National Kidney Foundation site for your research on self help!

[HOLLYANNhopefulanna in reply to Mitchum]

Thankyou so much Mitcham,I will do that,best wishes,

[Deejay62]

Hi, I was diagnosed with heart failure 21 yrs ago. 13 yrs ago I had my first device a CRT-P then 5 yrs ago it was replaced with a CRT-D. I have lived my life like others, but knowing I have the condition caused by Dilated Cardiomyopathy, which is now severe. From the time of my diagnosis to now medicines have come a long way, and keeps on improving.

All this will actually depend on your EF. And even with a low heart function some people don’t even have any symptoms.

It will depend on you, we are all different. Some people have improved their Ejection Fraction from 20s% to 40s. The norm is 50% and above. Mine is 23% as of last year scan. I think it also depends on underlying condition. My condition is progressive due to DCM.

[HOLLYANNhopefulanna in reply to Deejay62]

Deejay thankyou for reply,its good to get information on something that is so new to me,as my gran used to say ( knowledge is power) so thankyou,will keep everyone updated,best wishes.

[Jack2019]

My mother in law was diagnosed with heart failure after having a heart attack. She was told it was functioning at 30%. She went on to live something like 16 years after that diagnosis and passed at the age of 91.

[HOLLYANNhopefulanna in reply to Jack2019]

THANKYOU JACK FOR TAKING THE TIME TO REPLY ,IT HAS GIVEN ME HOPE,WILL LET YOU KNOW HOW I GET ON WHEN IV SEEN THE HEART FAILURE CLINIC, BEST WISHES,

[Layla2023]

Hi thereI was diagnosed with heart failure last July after a blood test. It came as a shock to me as well. My mum also had it, having a pacemaker fitted when she was 80. She passed away in March this year at 95 years of age so I am hoping to follow in her foot steps. From July to February I underwent so many tests. ECGs, Echocardiograms, CT Scan, MRI. I was put onto various medication - a new one each month with a blood test to check the effect on heart and kidneys. My EF went from 25% to 43% and my NT BNP dropped from over 2000 to 300 from June to January. I have now been discharged from Cardiologist and Heart Failure nurse back to my GP. I will need blood tests every 6 months. I feel much more relaxed about it now. Soon to start Cardiac Rhabilitation classes.

I hope that your outcome is as good as mine.

[HOLLYANNhopefulanna in reply to Layla2023]

Hello layla,firstly thankyou for replying ,secondly I'm sorry that you lost your mum, thankyou for your encouraging message,I hope I am as lucky as you,it's all so new at the moment,learning about it ect, but hopefully I will learn more when I get app to go to the heart failure clinic,can I ask what the symptoms are? That I need to look out for,again thankyou for taking the time to txt,I will keep you informed ,best wishes,

[Layla2023 in reply to HOLLYANNhopefulanna]

I have COPD and was getting more breathless. As the lung function tests can put a strain on the heart, my COPD nurse wanted me to have everything checked out which threw up my heart problem. I had also been getting incredibly tired. With the medication I am on for my heart I'm less breathless now and my energy levels are slowly improving. It was a scary 6 months though.

[HOLLYANNhopefulanna in reply to Layla2023]

What medication do they put you on for this,or is it different for each person,I'm starting on forxiga( dapagliflozin) tomorrow, then in 2 weeks time my cardiologist wants me to start on carvedilol ? Thanks so much for your reply,

[Layla2023 in reply to HOLLYANNhopefulanna]

I'm on foxiga to help the kidneys and bisoprolol. Also emplerone and entresto. I guess different doctors use different medication for different people though.

[HOLLYANNhopefulanna in reply to Layla2023]

Thankyou for information very kind of you,my cardiologist did mention all of those meds,but for now I am on the ones I mentioned,thankyou layla,I am seeing my gp tomorrow, so will speak to her about it,everyone on this site has been very helpful and understanding, so thankyou to all,best wishes and thankyou again,

[A246]

I was diagnosed in July 23 with heart failure, atrial fibrillation, mitral valve regurgitation and an ejection fraction of 16 percent. That meant 16 percent of oxygenated blood getting to oxygenate the rest of my body. I was terrified too my dear. Nearly one year on, I am optimally medicated, I have an ICD fitted as a precaution. I am feeling AMAZING and have just gone back to work and am driving. I am have made lifestyle changes, lost weight and exercise a little each day. I am no longer afraid because I my cardiologist and his team have been amazing and I have learnt about my condition. So please try not to be afraid. It is no longer a death sentence . sentence. You too will feel better once you have been sorted. This site has also helped to get me through, because there are many people who have lived with this condition for years. I hope my story helps you buddy. I am a 58 year old lady. I feel great.

[HOLLYANNhopefulanna in reply to A246]

THANKYOU SO VERY MUCH A246,YOU HAVE MADE ME FEEL LESS ANXIOUS WITH YOUR STORY AND KIND WORDS OF ENCOURAGEMENT,THANKYOU SO MUCH,I WISH YOU THE BEST FOR THE FUTURE,THANKYOU SO MUCH AGAIN,

[A246 in reply to HOLLYANNhopefulanna]

It's ok my friend, I totally get you. You too will feel better once you are properly sorted and on on the right treatment plan. My heart does go out you truly. But please try to carry on with your day to day life as best you can. Please keep us updated if you don't mind.