Heart failure and pacemaker

[Andrew1966]

Hi, I was told I had heart failure about 4 years ago @ 38% which was a bit scary but then found out 60% is about the best you can get, they say this all came about because of cancer treatment I had 38 years ago, in January 2018 I had complete heart block so now have a bi ventricle pacemaker, I know all the people that are still alive are being nice and positive but this isn't really giving a cross section what to really expect which would be nice.

[skid112 Heart Star]

Hi Andrew,

information from the BHF is here, bhf.org.uk/heart-health/con.... Doubtless you have done the Dr Google search and seen all sorts of prognosis, there isn't a cure but there have been great steps forward the last few years, so much so that half of sufferers will have a normal life expectancy.

I hope a few of our members will come through with their stories and experiences

good luck

Mark

[Andrew1966 in reply to skid112]

Thanks for your reply Mark, yes I have looked up on google and kept coming back with 5 and 10 years and what you say about all the advancement in treatment, I only turn 52 in Feb 2018 so for normal life expectancy I would need another 20 - 25 years, I've asked my consultant, G. P. and BHF heart failure nurse but they don't seem to like the question, I know it could only be a fairly open answer as they say it very unpredictable but with a bit of guidance it could help with some life style decisions.

[skid112 Heart Star in reply to Andrew1966]

Yes, most tend to avoid answering that sort of question. If i were you I too would be searching and asking, I doubt you will get definitive answers but over say the next year you will be able to measure if your % gets worse and then extrapolate from there, not going to be exact but will give you a better idea for planning.

Keep asking, while i think most will avoid, you may come across a realist who will 'give it to you straight'

Mark

[Bigbrian in reply to skid112]

Hi

My professor of cardiology told me “you are born and then you die and the bit in between is called your life, live it.”

Good advice from a guy who has seen it all when it comes to hearts

[Andrew1966 in reply to Bigbrian]

Hi, I think the reply I had from Howardl sums thing up very well. I'm now 53 how do I take my life forward, am I likely to need a pension ?

[Bigbrian in reply to Andrew1966]

hi

I am in the same boat, now 5 years into heart failure, pacemaker fitted and top meds. The question you are asking about life span can’t be answered by anyone, you want somebody to guarantee you 40 years , then you can settle down to life?

Well look at it another way, from a different end, and start living your life like there’s not much time left so I better get busy living.

[Lezzers]

Hi Andrew, my husband has HF, was diagnosed just over 5 years ago & he's doing really well. You mentioned 38% then 60%, are you referring to your EF? Kevin's is 30 was 35. Never Google HF, the info is usually incorrect, out of date or just not applicable to your type of HF. I would think your health professionals would not be able to give an absolute regarding what to expect as everyone is different. 20 years ago Kevin had a massive HA leading to cardiac arrest, I was told he wasn't gonna recover so they turned the life support off, he's still here!! I'm always recommending a foundation charity called Pumping Marvellous which is solely for people with HF, their families & there carers. They have a Facebook group which is amazing for help, support & advice & as it's a closed group it's confidential. We have been told Kevin is high risk of sudden death & has been fitted with an ICD, the support I've got from Pumping Marvellous has been amazing. I hope you continue to do well. Xx

[Andrew1966 in reply to Lezzers]

Hi there, thanks for your reply, sorry not to make it clear on what I put about the EF, what I should have put that the consultant told me that mine was 38% without explaining normal is 60% so I thought 38% of 100% is bad but really it was nowhere near as bad because it is 38% of 60%, I find lots of people are really nice and positive but the Heart failure nurse did seem to understand where I was coming from a bit as at 52 still working there could be some life style changes I could make like looking at early retirement sometime, I think I was starting to get use to the heart failure thing and then going to A+E with 3rd degree heart block has opened up wounds (so to speak). All the best to you and your husband.

[laura_dropstitch Heart Star]

From my experience, medical professionals are very vague in their answers to those questions, but I do believe it's because they genuinely don't know. My cardiologist is not at all shy about delivering frightening news without any sugar coating, so I'm certain he'd be telling me my life expectancy if he knew. My understanding is that there is no cure, but modern treatments can help, either by keeping us stable longer, slowing deterioration or (less commonly) making us improve. Positive lifestyle changes will always help your health, regardless of your age/heart function, but (as with medication) there's no guarantee how much they'll help. The vagueness and uncertainty of heart failure is frustrating, but I have been able to let it go a bit more as the years have gone by and am content when I know I'm doing all I can to give myself the best possible outcome, whatever that outcome may be.

[Prada47]

Hi Andrew

I think I have had HF for a minimum of 3 years and I am now 70 ( a young 70 )

Like others have said it really almost impossible to predict life expectancy with HF and I think the reason is because HF presents in many different ways. E F is only one measure I have been told you can have a low E F without any symptoms, things like QRS intervals and many other things come into play. If you look at the NYAH or NYHA scale that may help a little to understand where you are.

I went to a seminar and end of life was discussed a lot of us looked aghast thinking who are they talking about, and then when I looked around the room I just thought, they are talking about all of us ,because most people in the room were well over 50 and end of life could come at anytime for a variety of reasons !!

Need to go now as I take Grandchildren to School so stay active it helps

Regards

Frank W

[Prada47]

Will visit this topic later as it interests most of us with HF

Frank W

[HeatherForanSmith]

I do not have HF but I do have a biventricular pacemaker fitted due to sick sinus Syndrome. My advice is if you can take early retirement do so. I did at 56 I am now 64 and have done loads in that time. With or without heart disease nobody is promised tomorrow. I personally try and focus on the here and now and enjoy each day as it comes. We are lucky to be living in a time where medical research and progress is so good you could easily have 25 years plus. Look after yourself and try not to dwell on things. I know that is easier said than done but worrying ages you. Good luck

[Heartlady1]

Hi Andrew... I totally get were you are coming from but I also think being given a life expectancy can actually be detrimental.

I was told I had HF 40% at the age of 33 and I had a son under the age of 1. !! I was told at the time to go home and enjoy my time with him as they could not guarantee I would be around in a year time!

Trust me this is the worst news.. .. and it does stop you in your tracks. I am delighted to say 22 years later I am still here and have been able to watch my son grow into an amazing adult. One thing that I did do back then was say to myself.... I am going to fight this.... I am going to be positive... happy .... and have a healthy lifestyle.

I have been told many times by the professionals that having a PMA is a massive help for the heart... whereas worry and stress can cause deteriorisation. So at each step I focus on getting the most from life and working on what I can do to give myself the best quality of life. So recently I was told I had gone down to 32% and was fitted with a device to help me. I now feel great but like you I want to make the most of my life however long that is.

So I am now making plans such as taking out some pension to pay off my mortgage and go down to working 3 days a week from next year. I plan to give myself as much free time to enjoy the things I want to do ( while I still need money I won't be a slave to it)

Now this planning isn't because I expect to die ( we all die at some point) but because the heart issues have made me realise what's important in life and I want to enjoy my life while fit and healthy.... not slave away at work till I am 67 only to struggle cos I have arthritis or something ( or my heart conditions worsens)

And although I would not wish my heart condition on myself... it has in some ways made me feel lucky. I have treasured and enjoyed and appreciated every day of my son growing up. I don't do petty arguments.... and lots of people around me enjoy the fact that I am so happy. I cut negative people out of my life. I don't put up with being bored or fed up.... I decide to change if I feel this way.

And now I am planning to move to the next phase of my life of semi retirement. And for me I don't feel the need to rush out and visit places far and wide. I enjoy the simple things... walking in the sunshine... watching nature and looking at clouds. I have good friends who I treasure and a son I love with all my heart.

How lucky am I to have all of these things and ENJOY them while I am here. Most " healthy" people don't recognise any of this until too late.

So I would say look at how you can cut down working.... and focus on having fun. And hey if we are still here in our 80s ... we will have been having a blast for all those years 😁. X

[Andrew1966 in reply to Heartlady1]

Hi and thank you for your amazing reply, you seem to understand where I was coming from, it's not all doom and gloom, as probably every fit person uses there prognosis (life expectancy) to decide partly how to live there life, (anything from retirement, move house ect) and not all fit people fit into there life expectancy some will be cut short and some have many more years, I think what I find the biggest thing is at fifty two I could take my pension but if everyone say you are going to have a long life end up financially pour,

Thanks again for your kind words

[Heartlady1 in reply to Andrew1966]

Hi Andrew... I do understand your dilemma...

Could you perhaps look to slow down a bit at work.... go down to 4 days a week for example.

're pensions do be aware that any withdrawal requests are added to your current salary and you may then incurr a 40% tax charge. I am taking out an amount each year that keeps me under the 40% threshold.

I hope that helps

Karen

[Prada47]

Retirement is the Best Job I have ever had, and I have had some good Jobs !!

Positive is the word, we all have off days ,but that's different.

I try to stay positive even on off days.

regards

Frank W

[Andrew1966 in reply to Prada47]

Thank you for taking the time to reply, I think you hit the nail on the head for my situation, I do enjoy my work and at the age of 52 I have some time to go yet before retirement age so what I'm trying to gauge is what is the right time for me to ease back on work. Keep enjoying your retirement and good luck.

[angedogs]

Hi Andrew,

I had hypertension for years which was uncontrolled most of the time. I also had angina which became unstable and that was what led to the tests which showed I had heart failure with an Ejection Fraction rate of just 21%. I was also diagnosed with dilated cardiomyopathy and left bundle branch block. I felt terrible, could barely function and my quality of life was diminished. I was put on several different medications which were titrated at the heart clinic by the nurses who were excellent with advise and reassurances. When I reached optimal medication levels 3 years ago I had a CRT-D implant. The two combined helped my EF rate to go up to 45%. I have good and bad days, more bad than good but I am still here and plan to be for a good few years.

When did you last have an echocardiogram? Your EF may have improved since you had your pacemaker.

My father was diagnosed with heart failure and heart block when he was in his early fifties and he was given a pacemaker. He was forever not taking his medication and was often admitted to hospital with fluid around his lungs, heart and stomach and he would get severe dizzy/fainting spells. Despite all that he went on to live to the ripe old age of 76. He died 14 years ago and since then treatment has improved even further. There is no reason why you (or I) shouldn't live for many years to come but there are no guarantees in life so we should live each day to the full and enjoy what we have. Good luck.

[Andrew1966 in reply to angedogs]

Thank you for your positive words, I do think I have been a bit unlucky with my doctors not wanting to talk about it, even my cardiologist who specializes in HF would only say you got several years yet and my GP said ask your cardiologist even though I wasn't due to see him for 10 months, I realise that nobody is guaranteed a tomorrow even if they don't have an illness but with a wake up call its just a reminder not to leave things to late. Wishing you good luck.

[angedogs in reply to Andrew1966]

I wouldn't say you have been unlucky. Most doctors, probably all, will not give you a prognosis on life expectancy for heart failure and to be honest I wouldn't want to know. Imagine if you were told you only had 12 months left, it would be like a death sentence hanging over you and if they were wrong and you died sooner think how that would affect your family who would have taken the doctor's word as gospel and if you lived longer then you would feel you were on borrowed time and would be scared and worried all the time. Doctors have no way of knowing, or guessing how long someone has left, even in the final stages when there is nothing that can be done there is no way of knowing for sure. They are not going to go and cause upset for the patient and his/her family by guesstimating which is why your cardiologist said you have several years yet, meaning it could be 5, 10, 20 or even longer.

[ozchrissy]

Welcome to the bionic club. I have had CHF (cardiomyopathy) for 19 years. I was 45 when I was diagnosed, and the dire predictions you read were relevant then. BUT here I am nearly 20 years later, still kicking. I was diagnosed with an EF of 18. I have a Biventricular Pacer ICD and my little angel in my chest has literally saved my life on numerous occasions. I feel so lucky, I sometimes look around me and think you poor suckers, you could drop dead, BUT I WON'T. I have been lucky as when I would start to deteriorate, I would find that there was a new drug, device, or procedure that was just becoming available and I was able to get it. I have had a Pacemaker for 12 years now, (my 2nd) and never had an issue with them. Also the new drugs are brilliant. Nearly all the tabs I take and definitely the devices I have, were not even available when I was diagnosed. We have come a long way, and I am proof of just what has happened in Heart Treatment over the last few years. It will take time for you to adjust, find your new 'normal', but you will do it. The alternative is not much fun for you or anyone else. While there is life there is hope, and you are in a great position to benefit from all that is available to you.

[Howardl]

Hi Andrew

Prognosis always stirs up a lot of interest, the un-known. When we heard the news that there’s something wrong with our heart and it’s incurable, a curtain is drawn over our future. We are officially told we are mortal. This is bad enough if you are collecting a pension but when your still working it’s more devastating because you want to have your pension years now while your still here.

I was told by the Heart Failure Nurse after I’d read on Google that life expectancy for Heart Failure was 6 years, that its ‘fingers crossed’. I don’t know which is the worst prognosis.

I think they can be more accurate with prognosis in general by collecting figures. I know it’s impossible to give individual prognosis but they should be able to give a general prognosis on figures collected. This would help making future decisions like should I just carry on as normal working full time or try and go part time. Very useful for private pension decisions.

It’s nice to hear on this forum that there are people living 20 years plus with heart failure. But there are many people who have lost the battle with heart failure that you won’t hear about. I would personally like the figures collected for a general prognosis even though my personal prognosis would be ‘fingers crossed’.

[Andrew1966]

Hi Howard

Thanks for your reply, I think you have put it into words really well.

Good luck.

Andrew

[Shaz12]

Hi Andrew, I know how you feel I had heart failure and fluid on my body December they don’t know why it happened. I wish you better

[Prada47]

Hello

Just wondering how things have turned out for the people who have posted to this thread now we are a few months down the line.

Regards