Hi,
I had a heart valve replacement in 2019, but now i have been told i have heart failure. I have the one where theres no treatment for it.
Would be grateful if anyone else knows about this.
Update!!! Ive found out today i have Preserved EF heart failure. And the only treatment is check ups!
I’ve not heard of HF where there is no treatment for it, perhaps you can give more information?
An excellent resource for people with heart failure is the Pumping Marvellous patient led charity. They have a website and a Facebook group where you can access lots of information and support. Try not to use Dr Google and stick to Pumping Marvellous, the BHF and NHS websites for trusted advice.
Thank you for your reply. All i know is the doctor said i have stiffening of the heart, which comes under heart failure. There is no treatment just check ups, and its worried me. Xxx
I think you should go back to your Dr & ask what type of HF you have & why does he/she feel you can't have treatment. Whilst there are several different heart conditions that cause HF there are 3 types of HF: HF with reduced ejection fraction, HF with preserved ejection fraction or HF with mildly reduced ejection fraction. Whilst HF cannot be cured I've never heard that you can't have treatment for it, if you have stiffening of the heart you would normally be given medication that makes your heart function more effectly and helps slow down any progression.
Thank you, i have an appointment for 5th April. I was just hoping to get some more information on here. Xxx
Unfortunately without more information I'm not sure there's anything anyone will be able to give you advice on. My husband has heart failure due to damage caused by a heart attack, this has caused his heart to stiffen & not pump properly, but he's on medication to help his heart pump more effectively. Can you phone the Dr & ask? Have you been referred to a heart failure nurse?
I rung my dr today but hes not in till next Thursday. I go for heart check ups with my mechanical heart valve, which i had replaced in 2019. But thats only once a year. Xxx
Its Preserved EF heart failure i have. Xxx
Yes, I saw your comments to another member. I don't have a great deal of knowledge of HFpEF, other than it was thought to be a rare condition However, its now recognised that it's a condition that's been misunderstood/incorrectly diagnosed & therefore not much research has been done about it. That has now changed & I know that the Pumping Marvellous Foundation is very active in not only changing this view but are liaising with NICE to get meds prescribed for it, mainly dapagliflozin I believe. If you haven't already done so, I'd recommend joining the pumping marvellous Facebook group as there are members in it who have the same condition as you & will be able to give support/advice on how to manage your condition & certainly how to get your GP on board rather than just say 'you have HF and there's no treatment for it'! Good luck, I know it's incredibly scary to be given a diagnosis of HF but you can live very well with it xx
thank you and yes ive joined that on facebook. Xxx
I have a bio/mechanical mitral valve which was placed in 2003 as a replacement for a mechanical valve I was given in 1984. After about ten years I was told I was in heart failure and had atrial fibrillation. I was given a pacemaker and put on Warfarin again. I've been well until about a year ago when I developed swollen ankles and a wheeze in my chest. After being treated for bronchitis with antibiotics and steroids I was finally sent for scans, ecg's etc and I'm now waiting to hear if I need another replacement valve. I think you need to ask loads more questions, the more you know the better prepared you can be. I must say that I don't know what kind of hf I have and I never thought to ask. It can be really overwhelming, I've been dealing with it since I was 15(complications of sepsis) until now and I'm 56. It's not easy, take care of yourself x
Hi
Thank you. I hope you are ok, and all goes well with your scans. Yes i will have to ask the dr which one i have. I just didnt think at the time, and it only sunk in and hit me what he said after i got home. Im on warfarin for my heart valve, and a beater blocker which the hospital put me on after my operation.
Good luck with your results. Xxx
hello Friendly19,
I’M sorry for the news you’ve received.
Heart failure is indeed something you don’t recover from BUT nowadays there are loads of different drugs which help you slowing down the degenerative process.
You must discuss options with your cardiologist, it seems to me a pretty lazy answer the one you previously got. If you’re not happy with your followup appointment in April, please ask for a second opinion. I’ve got congestive heart failure, although I know it cannot be cured, I’m on a cocktail of meds which help my quality of life on a daily basis.
All the best
Good morning.I have HF, more specifically Non Compaction Cardio Myopathy and my EF is 5%. It was in September and last scan 3 weeks ago. My drugs have been changed and I have been referred to Harefield for transplant so there is always hope. X
Hi
I hope everything goes well for you with a transplant. It just shocked me when they said i had heart failure. And when i asked what treatment would i get, he shock his head and said its not treatable. But it didnt sink in until i got home. Then i just broke down crying.
Good luck with your transplant. Xxx
Like you I was told a couple of weeks ago that my Heart Failure is severe and that there is no medical intervention, came as quite a shock as a year ago the Cardiologist talked me through having a Biventricular Pacemaker, however having transferred me to Heart Failure Nurse Team, all that has happened is they have tinkered around with my medication and suggested that I need Inhalers for the breathing problems which after having a Lung Function Test proved that it was my heart causing me breathing issues and not my lungs, which considering Papworth Hospital had already done exensive Lung Funtion Tests which showed that it was my heart and not my lungs I felt was just another waste of time. I have been fobbed off for the last 12 months during which time my heart has deteriorated and now not suitable for a Biventricular Pacemaker or any intervention, I can't help but wonder if it is to do with my age (74) or the millions on the waiting lists could be the reason for not going ahead with the Biventricular Pacemaker a year ago. I am going to have a look at Pumping Marvellous as suggested by EU95PTM as I feel extremely let down by the NHS. My very best wishes to you.
Hi Snackjack,
Im sorry to hear this, i hope they can help you, and age shouldnt come in it. Its awful when they dont tell you much, and you left worrying. Im hoping i can get some answers on Thursday when i ring him. If not i will have to wait till 5th April, when i have appointment.
Take care xxx
Thank you for your kind reply, I made a complaint, not that it will reverse the damage to my heart over the last 12 months, and have an appointment on Monday morning with one of the Team, I fully expect it will just be about jutifying their actions, or non action. Hope that you can get some answers on Thursday. Best Wishes xx
Hi,
Good luck for today and i hope your appointment went well. I had to get appointment today for a bad ear. So i asked when i was in, she said i have preserved EF heart failure. And there isnt any treatment for it, its just check ups. Xxx
Do you do Facebook at all? If so I highly recommend you join the Pumping Marvellous Facebook support group, there are a number of people in the group that have HFpEf (HF with preserved EF) I'm not really up on HFpEF but I do know the Pumping Marvellous Foundation which is the UK's leading patient led charity are at the moment actively involved with NICE to try & get them to approve meds for your type of HF, sadly GP's aren't always aware of this type of thing, any type of HF isn't curable, however it can be treated by meds. Unfortunately HFpEF has been poorly understood in the past but it's now very much in vogue & things are improving. The group is incredibly friendly & supportive, the group members are all either living with HF or caring for someone with HF so have lived experience of it. If you don't do FB, have a look at the Pumping Marvellous website, so much information there & you can chat with a patient educator who will be able to help & advise. Good luck 🤞 xx
Thank you for mentioning Pumping Marvellous Facebook support group, I wasn't aware of it. I am on Facebook so will see if I can join.
Oh definitely join, there's always someone to talk to, to give advice, support etc. It's very hard for people to understand what it's like living with HF, some days are good some are not, some people are able to live normal lifes, some are not, unfortunately it's a complex condition & it's hard for some to understand that.
Thank you very much, yes i will try and join them now. I hope you are ok. Xxx
Seems we are both in the same boat (I never did like being on the water) as I was expecting response was going to be "well we are where we are now". I told her that I felt like I had a ticking timebomb inside me waiting to go off, she agreed that is what it is. Whilst I was there she did arrange for two of my other upcoming appointments to be dealt with today, Echocardiogram (which had been booked for 24th March) and fitting a 24 hour monitor (which had been booked for Thursday this week) which I have to take back to the hospital tomorrow morning. I have to go for blood tests on the 24th March, they couldn't fit that in today. She adjusted some of my medicaton to see if it improves my breathing problems of getting out of breath barely doing anything and stops me being able to walk very far because I get so breathless. So like you it will just be check ups going forward.
Keep in touch and let me know how you are getting on xx
I will do. Im going to join Pumping Marvellous facebook soon. Im pleased they brought some of your tests forward to today. Take care xxx
You really need to go back to the GP and ask why he/she cannot treat you. There is no cure, but many people live for a long time with heart failure with the appropriate treatment.
Before you see the GP again, perhaps you should talk to one of the very helpful nurses at the BHF. They might help you to have a more meaningful conversation with your GP.
Hi
Hope you are ok. I went this morning with a bad ear, so i asked while i was in. She said i have preserved EF heart failure, and there isnt any treatment. It will just be check ups. Xxx
I also suffered a heart failure issue I only have 20% I can only take the tablets and live for the day keep well as possible. I had a I C D and pacemaker afew weeks replacing my IC D
Im sorry to hear that, i hope you keep has well as you can. Ive found out today that its preserved EF heart failure i have, and theres no treatment. I will just get check ups. Xxx
This might be of interest - an NHS cardiologist talking of both types of HF and treatment 😊
Travel with Heart Failure
Severe heart failure and chemo
Newly diagnosed with heart failure
