Study highlights risks of anxiety and depression after cardiac device implantation

help

by Tracey_E - 2024-02-16 15:49:46

I can honestly say, I would not have sought help and I don't think I needed it. I've always been blessed with a responsive team that answered my questions and included me in the decison making. I understand not everyone is that fortunate, but that went a long way to allay my fears and I adjusted easily. 

My health deteriorated significantly the two years before I was paced, and I felt amazing after, so I had a few moments of "is this normal" and some bumps getting the settings adjusted, but overall I was practically giddy to have so much energy and no longer be constantly dizzy and exhausted. I had no idea people dealt with so many difficulties with both the surgery and emotional recovery until I read about it here. For me, it was a positive experience. It doesn't hurt that I've always been a glass-half-full find-the-silver-lining person.

What would have been helpful was a forum like this. I did fine after, but in the time leading up to the surgery I was petrified. The internet was in its infancy when I got my first device so googling for answers was not a thing and I just knew it would be the end of life as I knew it. I'm congenital but I'd never met anyone else like me until here in my 40's.  It's been great finding others like me and I count a lot of members here as friends. 

I just needed to be believed

by Gemita - 2024-02-16 15:55:58

While a lot of criticism is often directed at our NHS in the UK, I have to say that once my need for a pacemaker was “finally” acknowledged, I did receive good treatment. 

The "process" of getting my pacemaker was the worst part.  The months, if not years of monitoring intermittent arrhythmias was the most frustrating time of my life when no one seemed to believe that I had a significant arrhythmia that caused debilitating symptoms like syncope, chest pain, breathlessness.  It took a heavy toll on my general health and confidence.  But once I received a diagnosis, I was relieved and the healing process started.  It is the not knowing and being told that we are suffering from anxiety that can be the worst part of anyone’s journey with heart rhythm disturbances which can be so difficult to detect. Additionally when I was referred to see a therapist, I initially felt somewhat offended, as though even after a confirmed diagnosis, they were still trying to push me down the mental health route.

For ICD patients, I believe it is vital that they get additional support to cope with receiving a shock at some stage in the future.  For the majority of us with single, dual or CRT pacemakers, I too believe that we should be given the opportunity to receive some psychological support if we show signs of distress.

I was referred for Mindfulness therapy and worked with a lovely retired A&E consultant who saw the need for heart patients to receive counselling to help them to accept their devices and their heart condition.  I was so afraid of taking heart medication and anticoagulation for the rest of my life and getting a device that might worsen my condition, rather than making it better.  It was only through learning about my pacemaker and heart condition that I came to realise my heart needed time to heal following device implant and that I needed time to come to terms with having a heart device.

While I completely accept that most of us at some stage on our device journey might need psychological or additional support with lifestyle, coping strategies, an exercise programme and so on and would benefit from it, not all will.  Some of us might benefit more from learning about our condition and its many treatments and from having a caring EP/Cardiologist.  I have also found turning to a support forum like this and speaking to others going through a similar experience has been immensely valuable 

I need to be heard

by Charbookles53 - 2024-02-16 19:29:03

I do not have an ICD, I have a dual chamber pacemaker and I have gotten extreme anxiety, depression, regrets for getting the pacemaker as well. My cardiologist is very difficult, he will not listen to me, will not answer questions, I wasn't given instructions on exercising, what is normal, or what is not normal. I have a wonderful PCP that I finally broke down to in tears and he listened to me, he felt the area, my cardiologist never has, and has never once used a stethoscope to listen to my heart, idk maybe they don't do that anymore but my PCP thought that was odd. He said it's about a quarter inch below my collarbone and I was feeling something catching when I lifted up from a laying position, he said do not let anyone tell you what you feel is in your head, you know your body better than anyone, even though X-rays show it's in place, I was feeling scar tissue catching under my collarbone. At that time it didn't have an area that was extremely raised and literally feels like it will poke through my skin, I know that most likely isn't going to happen but it would really be nice if people had compassion and programs for people dealing with pacemakers or ICDs. I have to put my seatbelt under my arm because I cannot stand the pain of the pressure that the seatbelt causes, even with a wool cover over that area over the seatbelt. It's extremely frustrating to not be heard or told it's in the correct position. I have to be mindful of every move I make because of the pain I have. Although my PCP is truly a wonderful doctor, he isn't a cardiologist and told me to be assertive with my cardiologist, but the man is in the room for less than 2 mins!! Even on the paperwork the nurse writes all of my complaints but I see after my visit my doctor writes, patient has no complaints and I always have someone with me who sees and hears what I say and how he dismisses me, I once apologized for being a "worrywart" my cardiologist stated, you should be worried"  I said what does that mean? He walked out of the room!! I'm just at the end of my rope with the anxiety and worrying and pain and depression yet there is nothing out there for me to seek help with. 

Very good post!

by Lavender - 2024-02-17 10:11:46

Your statement:  "I have come to the conclusion that people who receive cardiac devices are sort of forgotten or over looked in the world of cardiology.  Frequently, it seems to be treated as a “one and done” situation.  You receive the implant and are sent out into the world with few resources and little guidance."

So true!  Count me among those who would have liked more guidance!  Due to the urgency of getting my pacemaker-a near death experience with a 33 second pause-there wasn't much time to be educated on pacemakers and how it would affect me emotionally and physically. 
 

Even so, I laid in the hospital two days before I could be scheduled into surgery. I wasn't permitted out of bed and a crash cart stood nearby.  So there were two days in which I could have had a pre-pacemaker team come in to teach me whilst I lay there. 
 

Until you have it inserted, you don't even know what questions to ask. But, there could be some guidance given.  Post op, I was kept overnight and had a cardiologist appt in one week. Ok-at the one week mark I could ask questions but my cardiologist dismissed most concerns as anxiety 🙄 She wasn't the best bedside manner doctor.

Just like when you get physical therapy after certain procedures, I think it would be helpful to have a few extra appointments offering counseling and extra help/advice for extraordinary pains.

Like pretty much every other person on this site, one day I typed in "pacemaker " and found this group. I read the site for seven months or so before I ever logged in.  That's how I comforted and educated myself.  

 Could you have used a little help? Questions answered?  Concerns listened to?  Coping strategies offered, if needed?  Would counselling in areas such as depression, anxiety, anger, fear, communication, stress, lack of social support, isolation, coping strategies and help with exercise, smoking cessation, healthy eating and/or weight loss been of any help? 
 

Yes! Yes! Yes! Yes! And Hell Yes!! 

Also

by Lavender - 2024-02-17 10:51:27

I was sent home from the hospital with a Boston Scientific CRT-P and Latitude Home monitor. I also got a little book in that box from Boston Sci that explains heart block, CRT-P's, and risks. It scared me so I put it in a drawer 🥴 I guess I could read it now-it's been three years 🤣

The best education I got on what happened to me was from an assistant to the EP. I asked him what happened to me. He took a marker and drew on the white board in my hospital room. He drew a big oval shape then a cross in it to divide into four sections. He made a dot at the top right section and said it was the sinus node. He made another dot near the middle of the cross. He said it was the AV node. He made a big X over the AV node dot and said it's dead. 

On the bottom quarter of the oval he made an X over the left "ventricle " and said you have left bundle branch block. He explained how the CRT-P will pick up the signal from the sinus node and vibrate the ventricles to keep the heart going. 
 

I took a picture of his drawing. I finally understood.  I printed that. It was simple but clear. Took him only a few moments to explain. 

My discharge papers simply said to take 650 Tylenol every four hours as needed and to followup with the cardiologist in a week. 

Sometimes all we need is to be heard and get a simple compassionate response. 😉 

From the article supplied by Beni...it may very well be a small percentage of people who need more supportive care, (and it says the older patients are less at risk for anxiety) but it should be assessed and offered!  The article states:

While some patients look forward to going home, others become anxious and feel it is too soon as they have had no time to adjust. She said: “One way to remedy this could be digital support, using an app or platform to provide information and reassurance, enabling patients to talk to a health professional if needed, and referring those with high anxiety or depression scores to a psychologist for an online treatment programme. We are piloting this approach, and in my experience, it is a minority of patients who need it, but for those who do, it can mean a world of difference.”

Interesting Post

by Penguin - 2024-02-18 16:04:06

I agree with the point that pacing patients are left out from the support which is often directed towards other cardiac patients e.g. those with heart disease. 

 I believe that prevention is better than diagnosis of anxiety / depression and treatment via counselling.  

With the current issues faced by the NHS in the UK (long waiting lists for example), I suspect that diagnosing anxiety / depression and offering counselling to pacing clients would likely kick in far too late.  In the UK Mental Health services are ridiculously overstretched and waiting times are excessive in many areas.  This means that GPs (PCPs) will likely put most people on medication whilst waiting for counselling simply to mitigate the dangerous risks of progression and to alleviate symptoms.  6-12 months on anti-anxiety medication, may help with symptoms, but it won’t deal with the underlying cause. A timely preventative approach would be far more helpful IMO. 

One such approach would be for hospitals to set up monthly support & information groups overseen by local hospital based pacing clinic staff and administered by peers.   An invitation to all pacing patients to join such a group, pre-surgery and post surgery would be a lifeline to many and would mean that patients would not be left with unanswered concerns and an information vacuum at a vulnerable time.  Speaking to other patients would help people begin to better understand the device implanted, the operation itself and after care instructions. It would provide an opportunity to receive information, ask questions and express concerns with the support of peers.  A preventative and information based approach would ultimately, tie up far less pacing clinic and EP time and ultimately would mean less time spent with over-stretched mental health services.   

In my experience many people who are treated with short term therapies for depression / anxiety do not recover very quickly and counselling for issues which have become entrenched or which have been covered up by sedating medication is not always successful.  Prevention in a timely manner would be infinitely more helpful.

Online groups such as this one, fill a void - hence your high count of posts citing  'Anxiety / Depression' Beni !  This is a helpful, safe place. 

Brilliant Idea Penguin!

by SeenBetterDays - 2024-02-19 11:26:19

I would have loved some kind of in person support group.  This would have really helped combat my initial feelings of isolation and provided a forum for airing questions and concerns.  I appreciate that the NHS is severely overstretched in terms of its resources but I have spoken to other cardiac patients who have automatically been offered cardiac rehab programs which included psychological support as well as advice on returning to activity and information on diet and lifestyle. I think that pacemaker recipients should also fall under this umbrella.  It will not be for everyone but, speaking personally, I feel it would have been invaluable during that first year post implant.  I also believe that many people, depending on the circumstances of their hospital admission, are suffering with undiagnosed PTSD which is not being acknowledged or dealt with.  This can have devastating mental health implications the impacts of which are felt not just by the individual but also their family members.  Thank you Beni for raising this really important topic.  I hope someone with influence within the NHS is reading your post.

SeenBetterDays

by Beni - 2024-02-19 15:50:12

What you describing is what is called, in Canada, a Cardiac Rehabilitation Program.  A patient is enrolled in this program after they have surgery by their cardiologist.  Once upon a time, only MI, by-pass surgery, etc.  patients were offered enrollment in these programs.  Cardiac device recipients were not included in the group of patients eligible for attendance.   But now they are.

Here in Ontario, where I live, the program covers such areas as:

Taking charge of your medical condition

Develop strategies to improve your risk factors for cardiovascular disease

Maintain an exercise program to improve your health and well-being

Incorporate healthy food choices and practices to manage your health and well-being

Develop strategies to manage your psychosocial risks for cardiovascular disease

Cognitive Behavioural Therapy to help manage stress and anxiety

The in-person program helps people with heart disease improve their cardiac health and fitness. It also helps them reduce their chance of future cardiac incidents through lasting lifestyle and behaviour changes.  It has a classroom component as well as a “gym” like component. 

So, the system is already in place.  There is no need to re-invent the wheel here. ( And yes, the medical system in Canada is drowning as well.) The question really is: why isn’t being offered on a more regular basis to cardiac device patients.  Across the board, no matter the type of device. No one, of course, would be forced to and I know several people who were offered the opportunity but declined to participate.  That is their choice.

As I mentioned in my original post, I was offered the opportunity and did attend.  The single most useful aspect of the program, for me anyway, was the increased confidence it provided me when it came exercising, in general and getting back to some of my hobby activities (golf) in particular.  The psychological aspects (CBT) of the program, although interesting, were not of great benefit to me (because of my professional background) but I could easily see how they would be a very positive benefit to others.  And, based on what I witnessed, a much appreciated benefit.

And since the science behind heart disease is constantly advancing, one can always learn something new  so attendance is never a waste of time.

Again where I live, and I can only speak to my locale, this program is free of charge.

But, consider this fact from the Canadian Heart and Stroke site:

Cardiac rehabilitation can be crucial for women’s physical and emotional recovery from heart disease. Women experience more depression than men following a cardiac event, but women are only half as likely to attend and then follow a rehab program. This is for a number of social and economic reasons, beginning with lower referrals from physicians to women not finishing the program because of work or family. 

Let me repeat one line in particular:

“Women experience more depression than men following a cardiac event”

Why?

Meanwhile, many women are not screened for depression after a diagnosis of heart disease or stroke. Since depression strikes women nearly twice as often as men, that is a big oversight. Depression increases the risk of a heart attack. It increases the chances that an attack will be fatal. And for survivors, it slows recovery.

However, I wish to point out, it is also clear that many men do suffer from depression and/or anxiety after the implantation of a cardiac device.  I find it interesting that, so far,  I think only women have posted to this thread. (I am making an assumption here, SeenBetterDays. 😉  Please feel free to correct.)

While I appreciate the Forum’s openness - and the fact the format allows for anonymity – encourages those posting to feel free to express their concerns, I am not sure that simply “being heard” by sympathetic listeners solves or even, many times, mitigates the seemingly overwhelming sense of fear and isolation many here state in their posts.  It helps, no doubt. And, yes, I, too, appreciate that I am not only one who has experienced a certain issue or has a CRT-D.   But, sometimes, a more formal support system, one that is an established practice of providing these services to cardiac device patients would be better at providing those who are in need with comprehensive and professional guidance.  Something available on national levels. 

And, as I pointed out in my initial post, there are over 3 million cardiac device recipients in the US alone.  Membership on this site is about 50,000, based worldwide, a small fraction of the numbers out there.  (How about this idea:  how can we help the new owners boost the membership here?  Anyone want to start pitching some ideas?  I’ll start:  should we be contacting our respective national Heart and Stroke societies and let them know there is this really unique support group out there? What else?)

Finally, back to the original thread and the study. One thing I particularly liked about the author of the study, Dr. Pedersen, is that she is a professor of cardiac psychology.  The connection between the heart and the mind, like the one between the gut and the brain, is something that is only beginning to be explored and understood.  One is, perhaps, more psychological and the other perhaps more physiological but both are still fascinating areas ripe for further study.

Men & Re-inventing the Wheel

by Penguin - 2024-02-20 12:18:43

Beni, I’d like to comment on two points that you’ve raised: 

“Women experience more depression than men following a cardiac event”

The statistics may show this, but if you delve deeper it may be truer to say that women are more likely to seek help than men and therefore they are more likely to receive a diagnosis and treatment for depression / anxiety or to be given one for a cause which has less to do with anxiety / depression and more to do with missing investigations into other causes.  

Re: Men - Yes, how they and people of other genders feel and respond to having a pacemaker implanted is incredibly important! I don’t have the stats / sources to hand, but male suicide is an area receiving a great deal of attention at the moment.  The research suggests that men are more likely (generalisation again) not to talk about how they feel and not to seek help and stats apparently show that they are more likely to progress to suicidal ideation or to complete suicide rather than admit that they can no longer cope.  How this affects the cardiac population I don’t know, but yes it really matters!  

CBT as a module of the rehab course you mention doesn’t resonate that well with me as a vital component. I found a cup of tea, socialising and sharing experiences with peers very helpful but wouldn't have been keen on formalised mental health therapy unless I needed it. 

Not sure whether the research into rising numbers of male suicides has found CBT helpful for men or not but perhaps we need to consider that short term therapy isn’t necessarily the answer, although it may be useful for some. 

Support via a forum may help someone take the first step if speaking out about highly personal feelings of being unable to cope is the issue and if this causes ‘shame’. It’s easier to do this with the anonymity that a forum offers as a first step to finding help perhaps? 

Single gender support groups have been successfully used in the UK to encourage men to confide and support each other in a way which they find mutually helpful and which often involves ‘doing something’ and sharing mutual interests as a vehicle to start difficult conversations about feelings.  The ‘Men’s Shed’ programme for example is an initiative which engages men in practical workshop type tasks which some men may enjoy and aims to establish friendship and a space to talk and confide when you're ready to do so.  Men talking to other men seems to be a strategy that instills the confidence to admit that all is not well to peers! 

Re-inventing the Wheel  - Why not?  There’s more than one way to get through to people and what works for some may not work for others. 

Beni - Link for you

by Penguin - 2024-02-20 14:17:48

Although not specific to mental health direcctly related to cardiac issues, this Canadian study into Mens Sheds, may be of interest to you. 

https://menssheds.org.uk/wp-content/uploads/Alberta-Study-Apr-2023.pdf

Thank you

by Beni - 2024-02-20 14:36:35

Thanks, Penquin.  I'll check it out.