two weeks since ICD fitted , out three times for very short walks and today Imblacked out, hitting my head which is bruised and cut. I am struggling to accept that’s mynheart attack/ failure is a serious as my wife is telling me. Can anyone kindly suggest anything that can help me come to terms with my condition and perhaps how to move forward. Sorry for asking but I need help
Difficult to accept: two weeks since... - British Heart Fou...
Difficult to accept
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JCDBARBRIDGE
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I'm so sorry to hear this 😔 I hope you are OK and not too shaken up. Are you on medication as well? It can be a slow journey before your heart starts improving or stabilising especially after what it's been through. My advice is to take each day as it comes and stay positive. You've been through a lot lately and it will take a while to recover.
When I was diagnosed with heart failure I felt like it was the end of the world. But I've learnt it really isn't the end and every day I feel stronger and closer to getting back to something similar to how my life used to be!
I don't have an ICD myself but I hear that it's helped people regain confidence, knowing they have this safety net, looking after them.
Best wishes
That’s super kind of you
Hi I have a mechanical aortic valve, Heart failure and a CRT-D implant. Heart failure is a terrible name and really requires changing, I live a full and active life that includes skiing and mountain biking. Give yourself time be patient you have been through a lot.it will come right. As for the blackout I would ring the ICD department and speak to them may it needs a minor adjustment or it’s just your body getting used to it. Good luck.
Thank you for you message, very much appreciated. I will follow your advice and reach out to the team and seek their support
Did the ICD actually shock you when you blacked out? Did you have it fitted as a precaution or after an actual heart attack\event? If blacking out or dizziness was not something you had experienced before the ICD I would probably contact my cardiology department and ask for advice as to what to do next.
Thank you for your message. I just blacked out , nom”shock” from the ICD. My GP suggested my meds need a “tweak” and has reached out to the Cardiologist unit who are looking after this aspect of my health. Hopefully I will have a resolution in the next day or so
OK, that sounds much better than if it was something that needed a shock. I found that my condition and\or meds would also sometimes make me dizzy, usually when getting up from seated but occasionally during a walk, but never to the point of blacking out, so tweaking the meds or trying something different sounds like a good first step to me. All the best going forward.
Thank you
Hello 
It is really hard to accept things as they are when I had my heart attacks as well as a triple bypass and my heart attacks had damaged some of my heart so now they class me as having heart failure
But people would say to me your life might not go back to how it was before all this happened but you have to find what you can do now and what the new you is and in time you will adjust to it and start to enjoy things again
Maybe you need to take is slower it is not a race and sometimes we want back what we had to quickly and be proud of what you can do and not what you cannot do at this moment
If you are really struggling then maybe some therapy to help you come to terms with things might help
So many of us feel this way but eventually it gets better give yourself time
I am so sorry about your fall that must have really shook you up so I hope you will take it easy for a few days but if it keeps happening talk with your Doctor for their advice but hopefully if you slow down listen to your body you won't need to
Let us know how you get on x
Thank so, so much for you your message and kind words. I do appreciate what you have shared and I have just returned from seeing my GP which was a positive experience. I will be seeking support for my head space and at a Heart Failure clinic next week. I am cautiously optimistic and will see what the next week brings. Thank you for sharing your story and I will provide an update my journey as it progresses
Hello
I am so pleased you have seen your GP and was a positive experience I am sure that will have helped
I am glad you are going to seek some support to x
Think l would be doing my walks on grass or its a cycling helmut for you. I have a cycling friend ,a past olympian medalist who has same as you and still goes out biking but not on hills as he has only 2 seconds get off. All the best.
Thank you
Although my husbands wasn’t a heart attack, it was a stroke , it has dramatically changed his life these last 10 months . He has severe aphasia , difficulties with communication reading and writing , right sided blindness so he is unable to drive . He also has heart failure which caused his stroke, AF, he is on numerous meds for this . He has lost confidence in things he used to enjoy like work, which he has had to retire a year early from , he used to love bike riding but doesn’t feel confident enough to start again because of his vision and fitness level. Sorry for long winded email but he is gradually coming out of his ‘depression’ and is gradually accepting his situation . I have referred him to a place called Twigs Community Garden , it’s for people with all kinds of health conditions to help give them confidence and feel like they have a replacement for work and meeting other people apart from family, as my husband doesn’t feel confident enough to go out on his own because of his vision and communication problems ….as yet. He will be doing light activities such as pot planting , painting birdhouses etc but more importantly he will be meeting other people who are or have been in the same situation . It’s very stressful when the rug has been pulled under you suddenly but there is light at the end of the tunnel hopefully . My husband is still attends the cardiac centre once every two months and is hoping for another ablation if his heart function improves from 33% . Take care x
Thank you for sharing your husband’s story. There are similarities and I will look to join a local group for additional support
I had an ICD fitted almost two weeks ago. I have done gentle walks, ( popped to the beach yesterday to enjoy some spring sunshine! More sitting than walking tbh) ...luckily with no incident.
The acceptance of things is very difficult for me, having had a mitral valve repair at end of December and now the implant, I feel back to square 1 again 😕
Not sure where you are, but ask your Cardio team about counselling. I have made use of this already and it does help to talk about with someone outside of family and friends.
I hear " things will get better" so many times, and it's hard to believe sometimes, but you have to keep positive but accept your life will probably be limited to how it was before...sorry that's the reality...yes I hate that thought too!
Pace yourself and don't overdo things.
Thank you for your message and candidness. I am seeing the Heart Failure team next week and will explore options available in my locality. I am uncomfortable with the name Heart Failure as it smacks of negativity and I recall a campaign called “language matters)” ( diabetes UK which resonates so, so much as language patterns are something that in my previous life was so relevant. However, acceptance and a plan to move forward is my priority , next Friday will be the start, thanks again
Hi, Its very early days, remember that. After my widowmaker 3 years ago I battle with accepting the situation. I am a fan of both Christian and Buddhist meditation. It is the mind that causes the feelings of hopelessness not necessarily the situation. We all have to accept the unacceptable, if possible, live in the moment and do not react to what our "monkey mind chatter" is doing. This takes practice but has really helped me. Once the mind is calm the body can and will heal. Tiny improvements are the goal. Be kind to yourself and I wish you well. God Bless.
ps check out Ekhart Tolle.
Thank you and super good advice, I have a background in people behaviour and language patterns which is rather ironic. I share you interest too thanks again
Hi, know how you feel. I have a Boston Scientific 2 lead IV-ICD fitted on March 12th. From getting home I felt worse than before the device. I had three weeks of severe distress and terrible negative thoughts. I spite of calls to the fitting centre I was told to get used to it until 3 weeks after fitting the hospital phoned me and said the device has 'lead failure'. I then went in for adjustments and the pacing lead was effectively switched off, leaving me with the basic shock protection system active until they could see me again for what they called a 'lead revision' procedure. This happened a week ago on May 1st. Basically they take the box out, and in my case also removed the offending lead and replaced it. Since then, apart from the wound healing, I am no longer aware of it! I am back to normal and have no unusual symptoms or feelings of negativity.I have made several posts about this journey so look me up and see more detail, it may be helpful.
There are very significantly increased risks of infection from this procedure and I found one paper about best practice. For example it is easier to have a lead removed following recent implant but the recommendation is a few weeks between procedures are recommended.
I believe a lot of unwellness was probably because the pacing lead function had been set at 60bpm resting heart rate, whereas for me I have bradycardia and this is normally around 40bpm. That combined with a loose lead was causing my heart to fight the device and the device to fight my heart as the misplaced lead moved around. This was affected by my posture.
I struggled still while waiting for the revision procedure and I had not actually seen a Dr. only a pacing technician which I was unhappy about. The way round this was to present at A&E.! Finally you should have a bedside relay unit of some sort Latitude if BS device. Press the button and send in a report whenever you experience a problem. Or several times a day. This will send a specific report which the technicians will receive a flag to look at. Data is really important. I hope this helps. I'm sure it's resolveable if the device is the source of your discomfort. For a while I convinced myself the awful was the new normal because somehow or other my condition had either got worse and the device fitting was timely or the device was revealing how bad I actually was. Neither was true it was the device.
#chinkoflight
Thank you for your message, I am with the Heart Failure team next week and will seek their advice and support
Hi, I have looked at your post again and your previous posts. You requested help to come to terms with your new circumstances.My point was clear, don't assume what you are currently experiencing is a new normal to get used to.
Don't assume that the EP team, that is technicians as well as Drs have thoroughly looked at your data.
They do make mistakes and currently there is no regulation or regime for monitoring implanted devices so staff are marking their own homework.
Yes, you do want to get it sorted and reasonably you should now feel not too dissimilar to how you felt before your event in February, with allowances for loss of fitness.
I accepted an awful new normal for 3 weeks before the hospital systems and work pressures caught up with the facts of failure.
Everything is now back to normal that is to before I collapsed with left ventricular tachycardia whilst on a parkrun and spent 7 weeks in a coronary care unit. Since diagnosed with cardiomyopathy with uncertain cause.
Unless you were already debilitated with a condition before your heart attack, you should reasonably expect to feel how you did then and collapsing without explanation is serious, whether caused by the device or not.
I hope this helps. A bit assertive I know but please accept it's very well meant and you are not just ready to accept your fate.
thank you/ great advice, I was active previously and intend to be so again
get an Apple Watch to track heart rate, it tracks also notifies heart rate below 50 beats.
I had 7 falls due to “stand up and black out! Two with bumps on the head but thankfully no worse.
Also get an app called heart analyser, shows average, minimum and maximum daily heart rates from the Apple Watch
See a doctor, blackouts can be life threatening!
I am considering the Apple Watch 9, would like to see the device beforehand. It seems a good option and an additional resource although it has mixed reviews. My local GP has been super good and has emailed my consultant re the episode and suggested alternatives
You do not seem to be asking for sympathy, but you surely have it from most of us "Heasrties". On coming to terms....well, things may very well get better than you think - obviously you have talked through this with a doctor ? If you haven't then you really should. Otherwise a scanty "comfort" is that what is happening to you is also happening, as we write, to literally hundreds of people. Try to enjoy life, as much as you can, in moments and hours
Tavishock
Wow you have really got this wrong. I am not seeing sympathy , luckily the vast majority of responses have been empathetic and understanding people’s journey and tacit knowledge has been of value
Hi I also found it difficult to accept my diagnosis of heart failure after 2 HA in 21. I was fitted with an ICD the following year as a precaution, my problems were my meds. Fortunately I blacked out in front of a nurse and this resulted in changing the dose. My blood pressure was dropping too low. I think I’ve been lucky with my ICD and now that my meds. are sorted I am feeling great. It does get better one of my nurses hates the term heart failure and I agree. Our medication really can improve things. Good luck.
Thank you for sharing your story, very much appreciated
I think finding it hard to get to grips with what has happened is a natural / ordinary part of coming to terms with what has happened. It is disturbing and distressing etc. so it would be odd not to feel those things for a time. Emotional turmoil, not feeling yourself, wandering where you life will go from here all seem appropriate.
Yep you’re right and it’s reassuring to hear it from the community.
"Before" medical problems I guess life could be planned without regard to the body which was depended upon to do things on automatic, in the background and without too much attention from us. When medical problems arrive the body cannot be depended upon and it is no longer a background presence, instead it keeps taking centre stage, dominating day in all kinds of ways - symptoms, appointments, reactions to medication, anxiety about treatments, trying to understand what is wrong etc. Suddenly the body is the centre of the world and if you have not been ill much before it is a very strange place to be. As things resolve themselves in what ever way they do is it possible to make adjustments and begin to build some trust in the body. Perhaps we many of us live thinking it won't be us until it is and whenever it does, whatever age we are, it is a big shock and perhaps feels like a betrayal by our body.
Hi....I think most of us with HF have felt the same as you at some point..if you stop thinking of it as HF and more that your heart just needs a bit of help to do it's job, you might find it a bit easier to deal with. HF really is a horrible term. Have you tried the Pumping Marvellous website?..worth a browse. Also have you had cardiac rehab?....if not I would recommend finding out about it from the cardiac team as it's great for building up confidence and making you understand your limitations with regard to exercise and what you can and can't do. Though I am careful with diet, I exercise and walk on a daily basis. There are still things that I'm a lot slower at but I don't really think too much about HF now and just crack on..It's about adjusting to a new normal and I really hope you are able to do that. All the best xx
Thank you for your message. I am just exploring online resources, Pumping Marvellous is good and I am seeing the Heart Failure team next week.
That's good...I am actually on my first holiday abroad since my OHS and HF diagnosis...I have been walking miles, swimming...bit slower than I used to be but not letting anything stop me. Hope you get on ok with the heart failure team and that they can put your mind at ease. All the best xx
Have a wonderful holiday
I'm on antidepressants . Up until my heart attack I was at the gym 5 times a week, coming to terms with my new lifestyle was very difficult as my mobility is that bad il never work again and the doctor said it will never improve, ask your doctor if he thinks antidepressants will help
Thank you for your message, will see how my journey goes before taking up your kind suggestion
Thank you....you've had lots of replies from people so I hope you can take some positives from them. Good luck with everything xx
hi what your saying is exactly what happened in our household nearly five years ago. I found it hard to accept I was as poorly as my wife kept telling me and I felt like a cheat letting people wait on me. Once I started at Rehab I realised she was right (as usual). Prior to my cardiac arrests I had considered myself to be extremely fit spending two hours a day at the gym plus scuba diving, cycling and hill walking. Having realised the seriousness of my health condition I could then follow the experts guidance to get my life on track. I had an EF of 10% and severe heart failure. This morning before 11:00 am, I walked three miles to the gym, did one hour on the equipment and then walked home.
This afternoon I’m off to pick up my grandchildren from school, non of this would be possible without my CRT-D, medication but most of all listening to my wife.
Take care, take your time and remember there will be things you can’t do anymore but there are also thousands of other things waiting for you to try them. Life is an adventure grab it with both hands and enjoy the journey.
As the wife of someone who's gone through all this, I absolutely love your comments & positivity. I'm so very glad that you're able to do so much, it is very much about letting go of the old & finding enjoyment in the new. Unfortunately my husband isn't able to do as much as you, but when you've gone through so much there's a lot of joy to be had in just sitting together having a quiet conversation.
Have a fab day, I hope your grandchildren don't wear you out too much!
Best wishes
Lezzers
I'm sorry to hear what you are going through. Perhaps my story will help a little.
My heart attack was 4 years ago. It was a massive blow as I was doing a lot to physical activities. I went from having no meds a year, to 8 a day. At first, I was aware of every unusual feeling in my chest. I constantly wondered if I had a form of angina. When I stood up from sitting, I felt a bit faint, and steadied myself before walking.
Soon after I was told I needed an ICD. I cried for only the second time in my adult life. I was devastated.
All I can say is that, apart from a few scares, every day DID get a little easier. My meds were adjusted so I don't get faint. I really appreciate I have an ICD so that I won't need one of the many defibrillators we see around. I have my own! Importantly, I have learned that the weird feelings I sometimes get in my chest are normal for me now and I don't need to put my will out on my bed as I used to. After a gradual process of adapting to my new circumstances, I'm having a good fulfilling life.
I very much hope your path from here will pretty much follow mine and many others here. Every time you are scared but end up being OK, try use it as a lesson to gain confidence in yourself and in your future. Good luck!
Thank you for sharing the detail of your journey. Similar to mine in so many ways. Very much appreciated
What did they say to you in A&E after your blackout? I'll bet a pound to anything you like they won't want to get rid of you until they get to the bottom of this blackout episode? Did they change meds? Alter strengths etc? You are lucky it was only your head that was injured, what would have happened if you had been driving or walking next to traffic. Please do let us know your progress and good luck with the medical investigations that you are no doubt going through.
To be fair it was GP who intervened and as usual he was super good. I was home so in some ways it was a good place for the event to happen. I have elected not to drive for the time being
Your reply still leaves so many outstanding issues and even if it was your GP who treated you at home, how did he deal with this critical medical issue? Did your doctor, who you say was super good, refer you to hospital for tests? What was the reason for these blackouts? Who was with you when you had these blackouts? Surely they should have contacted a hospital and not just your GP. I am not belittling how you feel, far from it, my concern is how you have been left at home with no answers that give a reason for your blackouts. For me, that is the burning issue, for at the moment you could be in danger of having future issues without anyone actually investigating the root causes. Can you let us know what folk are doing for you in that regard?
So my partner was with me at home. My GP knows my health history. Took BP , checked medication, and messaged consultant with a suggestion on what needs to happen. The meds I am on are prescribed by the consultant and GP cannot change type of medication etc. the blackout was due to my BP , standing up too quickly and as I’m sure you will know can cause dizziness. I will be seeing the Heart Failure team next week and will be speaking with my consultant later today or tomorrow. My behaviour needs to reflect my condition in that I need to pace myself/ slow down rather than doing too much too soon which is a trait I have had for as long as Incan recall
Good afternoonI had an ICD implanted in October last year and to be very honest I've had no issues as such apart from being unable to go back to the job I did previously.
Mine was fitted as a precaution after I had a cardiac arrest a few days after having an ablation.
All I can really say is take it easy to begin with we as humans are so stupid in some ways because we always try to push to do things faster than we should,
I'm now back to chucking 25kg bags of animal feed around moving large round bales about and I'm walking around 10,000 steps a day my next big test is shearing the sheep, but like yourself and ironman we are all powered by batteries so nothing can go wrong,
What I'm really trying to say is give it time and you will be fine, it seems far away but before you know it life will be 95% normal
Thank you, very interesting and inspiring hopefully I will follow a similar path
Yes, heart failure is such a terrible name. Compromised heart function would be so much more acutate. After I had my mital repaired at the Brompton I thought that would be it, then I was told I had 'heart failure'. Like you that was a bit of a shock to say the least. You'd think after OHS everything would be ok. Anyway to cut a long story short, they did a scan and measurements about 5 days post OHS, and at the time I was carrying about 10kg of fluid retention. The scan said my ef was about 37%. Subsequently after getting rid of the fluid, adjusting the meds, tweaking my pacemaker and 18 months of recovery my ef is now 50% and although I get breathless with excercise I've come to terms with the situation and accepted that it's about as good as it's going to get. I'm 66 and hoping for at least another 10-15 years😉
Thank you for sharing your story. My HF was 22% , hopefully the ICD and meds will make a sustainable improvement. Reassuring to hear your story thanks again
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