Turning off defibrillator inquiry

defribrillator

by Julros - 2023-12-11 16:46:02

Hi R2D2. I am very sorry you are going through this. You sound like you are experiencing PTSD, which is not surprising, and I hope you are seeking help for that. It sounds like you feel betrayed by your heatlhcare team, and I hope you can speak to them about that. 

Yes, sometimes the defribrillator function is turned off. This happened to my father-in-law as he was dealing with end-stage liver failure and dementia. He had no hope of recovery and allowing him to die from a sudden cardiac arrest seemed the kindest thing. 

But you are young and have so much life ahead of you. Yes, things seem very dark now, but you seem to be rushing for answers as to why your device discharged. An ICD is usually programed to try to speed up your heart first, before it delivers the shock, so perhaps some settings can be adjusted. Also, there are antiarrhythmic meds that can help. 

I urge you not to rush into deciding the ICD is the root of your unhappiness. Mindfulness exercises like medication and breathing exercises can help to tone down your sympathetic nervous system. I definitely think counselling can help, and your provider may insist on it before turning off your defibrillator. 

Best wishes, dear. 

Julie

The difference between a pacemaker and an ICD

by atiras - 2023-12-11 17:23:52

I'm glad you're alive but i'm going to be blunt.

A pacemaker can do many jobs. It can prevent your heart from beating too slowly.  It can also make sure your heart actually beats. My first pacemaker and my current one both make sure my heart beats. First time around I had an AV node ablation so I was totally PM dependent; currently I have intermittent high grade heart block with ventricular standstills, so 30% of the time my heart doesn't beat without the oacemaker kicking in.

And neither pacemaker would have saved my life when I had an SCA out of the blue a couple of years ago. I was lucky. I'd had some warning - a weird persistent low heart rate (bigeminy as it turned out) in spite of being 100% paced at that time. I called an ambulance and was sitting up in bed in hospital talking to a consultant and a senior cardiac nurse when the lights went out. Turned out my heart flipped a switch from beating too slow to beating far far far too fast (ventricular fibrillation). Nothing in my history predicted it. I would have died if I'd still been at home .It took several shocks to return me to the land of the living.

I demanded an ICD and received one. I would rather be shocked than dead - the chances of a full recovery from an SCA in hospital are still so low that I spent days with nurses who had been involved at the time coming to my bedside clearly traumatised to reassure themselves that I was alive and kicking and had taken no permanent harm.

Your defibrillator shocked you because it needed to do so. You may not have previously  had an episode of a heart beat that was too fast, but you have now. I was 100% paced when my heart tried to kill me.

PS for those wondering about the full sequence of events and why I dont have an ICD any more see my profile.

Give yourself a chance

by Gemita - 2023-12-11 19:18:24

Janene, Sadly we have had several members in the past who have asked about turning off their devices.  As a moderator here it is always difficult to know how best to respond to such posts.  I genuinely want to help you, but I also need to be mindful of other vulnerable members who will see your message and who might be deeply disturbed by your thoughts.  

The Club is here to give hope to members who are in distress, hope to find a better way to “live” with their pacemakers and to have a quality of life.  I urge you to seek professional help as soon as you can before making any decision that you might regret.

As a heart failure patient, your defibrillator is there to stop a sudden, sustained ventricular arrhythmia from which you would probably never recover.  With heart failure, you are at high risk of significant ventricular arrhythmias until your heart failure is stabilised.

You cannot make an assessment about why your defibrillator shocked you before you hear from your doctors.  It may not have been an inappropriate shock.  Although a shock is not without its own risk, your heart would not do well in the presence of a sustained ventricular arrhythmia either.  It seems to me that your doctors didn’t discuss any of this fully before the decision was taken to implant your device?  

You need your defibrillator to stop abnormal heart rhythms or dangerously fast ones.  A CRT pacemaker without a defibrillator wouldn't be able to stop a sustained ventricular arrhythmia like VT or VF, even though it can prevent abnormally slow heart beats and also help your ventricles to stay synchronised.  You need both parts of your device to manage your heart failure.

Janene, please give yourself a chance to discuss this fully with a health professional before you come to any decision.  I know you want to live and to be well and I still have confidence that you can make this happen xx

Quality versus quantity

by R2D2 - 2023-12-11 20:00:26

I of course want to continue living, but I'm also not afraid to die. I explained my situation to my boyfriend asking how he would feel if someone stood behind him for the rest of his life with a taizer and said they may or may not shock him, how would he handle that? And he said exactly what I thought he would.... "I wouldn't ever want that, how can you live like that?" .... Exactly. Fear is not part of my accepted responses. 

I'm sure I'm on the autism spectrum, because I think about everything to an abnormal degree. That doesn't go well with heart failure. I had already accepted the fact that my life was probably going to be cut short. I watched my Dad suffer for many years with CHF and literally saw him die slowly for 2 weeks. It was horrible. 

While I agree that the device is doing its job, I didn't want a defibrillator. I wanted just a pacemaker but my doctor said I couldn't get the help from that 3rd therapy wire that would hopefully stimulate my left bundle branch block without getting this device. I was scared, so I agreed. 

But... I won't jump into an unwise decision based on fear. I will hear him out before I make any decisions. I want to know if it was an actual therapy shock, or just a 'miss fire'. In the mean time, I feel weak, nauseated, and light headed most of the time for a week now, and I'm being told it's just anxiety. That's their answer for almost everything these days. A hospital in my area actually said there was nothing wrong with my heart, it was all in my head.... that was less than 6 months before my first echo and confirmed CHF diagnosis with a 30-35 EF. So I clearly have trust issues after having been sent home with anxiety medications and muscle relaxers. 

End of Life and Heart Rhythm Devices

by Gemita - 2023-12-12 04:20:31

Dear Janene, I attach a .pdf link produced by The Heart Rhythm Society which should be copied and pasted into your browser.  If you then click on it, it will go into your downloads folder where you can then open.  I think it is a very helpful guide for those patients who are at the end of their life or wish to know about these things.  I would like to believe that you are not in this category at the moment and that there is still quality of life to be enjoyed but perhaps I am mistaken?  I certainly wouldn't wish to see you suffer and I agree quality of life is what is important.

I would also like to believe that your defibrillator will not cause frequent shocks with an ejection fraction in the 30-35 bpm range and hopefully recovering more in the future, but if this optimism turns out to be wrong, then again you can discuss all your options with your doctors.  You could perhaps ask if a support group exists at your hospital for defibrillator patients, or ask to be referred for one to one psychological support urgently?

I hope you are able to have a meaningful discussion with your doctors on Thursday and that you will come away with a plan that might work better for you which could include a change of doctor, perhaps, or even a second opinion since I sense trust in your present team appears to be fragile. What is more important though is that we never stop believing, trusting in ourselves and in our ability to make the right decision about our needs. You would indeed be lost without these gifts xx

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwj_qsST4IiDAxWLhP0HHfM3Cj8QFnoECCgQAQ&url=https%3A%2F%2Fwww.hrsonline.org%2Fdocuments%2Fend-life-and-heart-rhythm-devices%2Fdownload&usg=AOvVaw1W6Ugz0vDUdFgaRuEvUyH5&opi=89978449

Good article

by Lavender - 2023-12-12 09:52:47

Gemita:

Good article!

Janene:

I have never had an ICD nor do I know what it feels like to wear one or be shocked. (I thought you said you blacked out and thus didn't actually feel the shock.) 
 

We have discussed with you in depth the need for counseling. Have you pursued this? There may indeed be something to the anxiety mentioned by others. In any case, at the end of Gemita's article suggestion is some very good advice using the acronym NEEDS:

Notify your loved ones of your wishes and document them

Educate yourself about treatment options

Evaluate all of your treatment options

Discuss your preferences and consider palliative care

Seek mental and spiritual health care to aid you in this difficult time.

Time and perspective

by R2D2 - 2023-12-12 13:10:40

I don't feel as freaked out as I did a few days ago, but am still struggling with dizziness when I lay down or tilt my head, and am not as strong as I was before the shock. I tried to walk across our field to my neighbors house yesterday and had to stop and rest and go very slow. 

So, I will discuss everything thoroughly with my care team and get it all out before I change anything. At this point, I don't think I'll request to have the defibrillator turned off unless my doctor thinks it would be a better solution... and I can't imagine him doing that. 

I'll hang in there, and continue to move forward in this journey... since you guys all seem to be in a better place after this first difficult part of adjustment. 

Thanks everyone!

Turning off the defibrillator won't make your worry/anxiety go away

by Gotrhythm - 2023-12-12 15:56:10

Dear R2D2, to solve any problem, it's important to ascertain where the problem is located. Your problem is located in your mind/emotions/philosophy. You find it unnerving to comtemplate a future in which the defibrillator might perform its function.

One answer to the problem is certainly to turn the defibrillator off. You'll never have to worry again about the possibility of it functioning again.

But is the problem really what the defribilator does, or is the problem really your fearful anticipation of the sensations that accompany the device functioning? If you felt nothing, if you noticed no sensations, would the action of the device bother you?

Put another way, if you could change how you feel/think about the meaning of the defibrillator firing, and feel at least neutral, wouldn't that solve the problem?

A lot of people think, "But that's what I feel! I can't change what I feel."

Not true. You can change what you feel and what you believe and what you think things mean. People do it all the time. Sometimes it's easy. Sometimes it's hard. But it's possible.

 I suggest you work on the mental/emotional/philosophical problem. Because if you turn off the defibrillator, you will still have the same problem, but then you won't be worried about the defribillator, you'll be worried that your heart could malfunction at any moment. 

I don't know what it feels like to have your heart go into a fatal arrythmia. I don't know if it feels better or worse that a defibrillator, but I predict it doesn't feel good. It could happen anytime, but you'd never know when. All day long you would have to worry if this heart sensation or that one means a fatal arrythmia is on the way.

Do you see that? Defribrillator or no-defribrillator, the problem is the same. Worry. Worry that is ruining the quality of your life today and stealing your future.

For sure, you should work toward a better understanding of your condition. The better your understanding, the better decisions you will make. But recognise that what you can do to make this situation better for youself, and have a life that's actually worth living is to come to grips with worry and anxiety.

Someone (in another thread) has suggested cognitive-behaviol therapy. Someone else suggested therapy for PTSD. I think they're both right, and that there are possibly other forms of therapy that would also help. Just recognize that the problem is worry, and what is making you worry is not located in your heart or your defibrillator. The cause of the problem of worry is located in your mind/emotions/philosophy.

You admit you tend to think too much. I'm suggesting that you aren't thinking too much so much as not thinking in useful ways. Making deep changes in how we think is not something most of us can do entirely by ourselves. Most of us need the help of a counselor or therapist.

Gotrhythm.... you're brilliant!

by R2D2 - 2023-12-12 21:28:54

Everything you said is spot on. This is exactly the helpful information I need. I had already come to that conclusion earlier today, you just confirmed it for me. 

I also had the opportunity to thoroughly discuss my feelings to my boyfriend who pretty much always says what I need to hear rather than what I want to hear. He knows my anxiety issues well and is always shedding light on what is really going on. Although, wisely enough, he also lets me vent however much I need to first before lowering the boom. 

Today I feel my confidence returning and a better attitude emerging.  I won't be asking to turn off the defibrillator on Thursday, rather I'll be getting better informed on what happened and why, and how they will go forward from here. 

Thank you ALL! 

Defibrillator

by Old male - 2023-12-12 23:14:20

I've had 2 shocks in the 9 years with defibrillators.  First time suddenly without any warning felt myself starting to pass out. Then shock.  It took me a few seconds to realize what happened.   I didn't pass out.  Second time doing lawn work at home.  This time I did experience some disiness for an hour leading up to the shock.  The reality is both times it was over immediately and I was okay.  Definitely not really painful.  I would personally not be willing to disable a device that's likely saved my life twice already.  Now if it comes to an end of life situation due to another condition, then maybe yes.  

The best

by Gramzo - 2023-12-12 23:28:04

You all are the best!

R2D2

by Gemita - 2023-12-13 04:13:27

Wonderful news Janene and yes I agree Gotrhythm has been absolutely brilliant in gathering up all the responses, analysing them and coming to the only conclusion possible.  I am also happy to know that each one of us has played such an important part in trying to help you too.  

It is difficult to read the forum sometimes, to know what responses to give, especially when a member appears so vulnerable and is going through such an anxious time.  Saying the wrong thing at the wrong moment, could potentially cause more harm than good and that is why some posts are so difficult to manage and why we need to encourage a member to seek "professional" help.

I am sure we have all learnt a great deal from your post Janene and I hope you will continue to share your journey with us x

R2D2

by Gotrhythm - 2023-12-13 13:21:31

I'm so glad you're feeling better! And also relieved that you didn't feel wounded by my admittedly  blunt analysis of your connumdrum. As Gemita says, it's our job to support one another. While we cannot, and should not diagnose, sometimes the best support is to point out that a member might be looking in the wrong place for answers to their quandary.

Being a person who thinks alot myself, who actually loves to feel my mind race, I have learned that a high-powered mind is like a team of spirited, fast, powerful horses. Horses love to run. A team will race out of control in a heartbeat and come to grief. Unless it has a skilled driver with a firm hand on the reins. Then, and only then can perform up to its magnificent potential.

To make the most of my little metaphor, it is crucial to understand that you are not the horses. And you are not the carriage, or cart, or the car. You are the driver. 

I have always found getting more information an excellant strategy for coping with anxiety. I think learning more about your condition will probably help. It's a steep learning curve for those of us without a medical or technical background, but any amount you can absorb will pay off in your communication with professionalsm and therefore improved decision making. In turn, that will pay off in boosting you confidence that you can live, and live well with your heart condition.

Keep at it, kiddo!

There is much knowledge and accumulated wisdom in this group. I have learned much here that I couldn't learn anywhere else about what I needed to know about living with a pacemaker. Keep us always as a resource.