New pacemaker patient feeling very anxious

Hi all-

I'm 28, and I am 2 1/2 months out from getting my dual chamber pacemaker. It was a very traumatic experience- I discovered I have sick sinus syndrome by flatlining in my home in front of my husband (poor man, he still checks that I'm breathing at night). I was gone for 29 seconds. I received my pacemaker five days later. The five days in between what happened and my surgery were the most paralyzing days of my life. I was convinced it was going to happen again at any moment, even though my cardiologist said he didn't think it would. I felt such relief after my surgery. I could breathe! A huge sigh of relief. I am not 100% dependent, but I do notice it pacing multiple times per week (they turned it down so the pace isn't so intense).

I am having a hard time coping with my newfound anxieties surrounding my heart condition. I was a chronic illness patient before this, I have MS, but having a cardiac issue is a whole new type of scary that I haven't before experienced. I had never seen a cardiologist before this happened- ever. How do you manage the fear that your leads will come out, or the battery will die before your replacement? Does anyone else feel anxious if you don't "feel" it pacing now and then? When I don't feel it for a few days I can almost convince myself it's stopped working- even though I know that's not really possible. I know I'm only a couple months in and that it will get easier, but I have been more anxious the past few months than any other time. It all happened so quickly and I feel like I haven't had any time to process it- especially since I had almost no time to prepare for this life change. It's also hard to accept that I have to have this device in me for the rest of my life- it still feels like an invasion, even though it's also offered me extreme comfort. The conflicting emotions are hard to reconcile.

Anyways, my wonderful husband found this site and suggested I give it a go. I've been reading your posts for a day or two, and finally gathered the nerve to post myself. Any suggestions or advice are so greatly appreciated. I'm grateful to know I'm not alone.

Erin


9 Comments

Help is Available

by Swangirl - 2019-07-08 23:25:36

Erin, you have had a major trauma and it's natural to have the thoughts you are having now.  Almost dying, or coming close to it, then getting a major new diagnosis on top of your other health issues is a lot to deal with at your age expecially.  I think it would be important for you to go to a therapist skilled in some of the newer modalities like Brainspotting and EMDR and nip this anxiety before it becomes your new normal.  

Often we believe that preparing for the worst and imagining our reaction will save us from bad things happening but it only makes us develop a habit of negative thinking.  Most fears never happen.  You do not want to create a pattern of worry and anxiety which could spiral into panic attacks and depression.  Put "anxiety" in the search line on this website and you will see a lot of people here with debilitating anxiety.  You don't want to go there.

Maybe you could work this through on your own with family support but I am a therapist and I think a professional helper could make it easier and faster for you to get to a more peaceful place.  

For some folk, objective data can help

by crustyg - 2019-07-09 06:51:12

I hesitate to add anything else after Swangirl's excellent advice.  For some people (like me), seeing objective data can provide a hook to hang on to - being able to see the evidence that the box is working fine, your heart is beating regularly yesterday and now, and probably will be tomorrow.

Getting a remote monitor that talks to your pacemaker every day and which will contact your PM clinic if there's anything abnormal to report so that the humans in the clinic can contact you and ask you to come in may help too.  I know that I really wanted remote monitoring during the critical first few weeks after the leads went in, and if I'd realised that I could buy myself a portable ECG (aka EKG) machine for about $75 that would show the atrial pacing artefact would have given me peace of mind.  But I see the world as an engineer, and that may not help you.  A pulse-oximeter on your finger - $20 - may be enough.

Fear is the little death - conquering your fears, with whatever help works for you, allows the strong, inner you, to come to the fore.  And for all of my fancy words, I struggle too - but without your huge burden: you are almost certainly stronger than you give yourself credit for.

Anxiety after pacemaker insertion

by Selwyn - 2019-07-09 10:28:38

Anxiety is a normal reaction to having a pacemaker.What is normal about having a little metal box inside of you? 

The most traumatic time, is as you have said, waiting for a pacemaker, knowing that your heart may stop at any time. Not wanting to sleep, and the same for your partner, just in case you miss some catastrophe in the middle of the night. Terrible! I went around carrying my own defibrillator, instructing my colleagues and friends in the art of CPR and how to use a defibrillator.

I felt much better once the PM was in place. We do rely on technology, whether driving our cars, flying in aeroplanes, having medical operations etc. Knowing that cars, planes etc. may crash  tends not to stop most of us from accepting a level of risk to life’s activities. My pacemaker is another of life’s activities.

I have had the same unit for 10 years. The battery life is monitored regularly- at present every 4 months. It is entirely predictable when I will need a new unit ( when the life of the battery is 6 months, plans are made). Even then there are safe modes extending that period.

The longer leads stay in place the harder they are to dislodge. I have had some experience of removing pacemakers, and their leads ( from those that have died and want to be cremated- PMs explode in a furnace). It is extremely difficult, even tugging with both hands, to remove a PM lead. You really need specialist equipment (eg. Laser surgery) to achieve this.

As time goes on, it is possible to forget about having a PM for most of The time. We still need to have check ups, just like aeroplanes have services. It certainly helps to talk about our anxieties, so well done on being brave enough to post. Do carry on. Anxiety is a normal reaction to a sudden change in life. As we look ahead to a normal way of life, we have to accept that life is for the living and there is nothing in life that humans do that is not without some risk, be it crossing the road, or just sitting in a chair.   It would be a shame to waste the opportunity that modern medicine has given you to live life to the full. Put it this way, you are less likely than the person without a pacemaker to have a fatal cardiac arrhythmia. This last year I have lost two friends to that problem. I definitely feel lucky to have my little machine with me at all times!

I hope this helps you to view your change in life as a positive experience, and your worries to lessen. Having a pacemaker does not shorten your life expectancy, and indeed may do the reverse.

Welcome to the Club.

Thank you

by erincotter - 2019-07-09 10:53:15

Thank you all for your replies! I'm hoping this is the correct way for me to reply to you three (still learning the site haha).

I'm really glad to know there are other people who understand what this is like. I'm the youngest person in my cardiology practice with SSS and a pacemaker, so my doctor wasn't able to recommend much in the way of local support groups. Looking around and seeing others close to my age has been a comfort.

All three of your replies were very helpful. I woke up this morning and read them while drinking my tea (no more coffee!) and it was exactly the start to the day that I needed. I look forward to reading and learning more from all of you.

Thank you all!

hi

by Tracey_E - 2019-07-09 14:08:22

So glad your husband found us and convinced you to check it out! I have av block rather than sss but I was you, newly married and giving my new husband a heart attack when my heart rate tanked and I found myself in emergency surgery to get a pacer. I was 27 at the time. I'm 52 now, healthy and active and rarely give it a thought now. I was the youngest in the practice for years and years. I switched to an adult congenital practice a few years ago so now I'm just about average but it's hard when they don't have other patients like us. 

I can tell my pacer is working because I feel good! I am dependent, have paced nearly every beat for the last 25+ years. It's really not as bad as it sounds. After a while, as we feel good longer and are able to do more, we learn to trust it and stop thinking about it so much. Don't be hard on yourself for not getting there overnight, but know that they day will come when you realize you haven't given it a thought in days or even weeks. My best advice is get on with your life. Go take a walk, plan a date night, volunteer with some kids who are coping with serious illness. The busier we are, the more easily we move on.  If you ever want to chat with someone who's been in your shoes, feel free to message me. It will get better. 

me 2

by happy2bealive - 2019-07-09 15:12:55

Erin- the similarities I've experienced with you are quite on point. I am 32 years old male ~ 2.5 months from my 1st implantation, and same thing, flatlined....what a terrible experience. Caught me off guard, near death experience, since then have fought panic attacks (thinking it is a repeat of my snycope experience). Even had to go to ER post implantation due to my settings being too low and it happening again!

Once I realized it was the anxiety it was almost freeing. I turned off my watch's heart rate monitor (the anxiety from constantly looking at that alone was scary), and anytime I don't feel right I just embrace it and know I'm not going to die...it's just fear/anxiety/PTSD whatever...I sit down, take deep breaths and start naming objects around me (not sure if that is scientifically sound but it works for me!) 

Hang in there, like Tracey_E and others who have had a PM almost as long as i've been alive, know there is light at the end of the tunnel!

Anxiety

by yeshua - 2019-07-09 16:43:17

I am glad to see many have replied and have hopefully given you comfort and hopefully some strength!! not sure if i will add any more info but, many have anxiety issues after implantation with most research pointing to about a rate of about 25%. Therapy may help, along with time, knowing that another day has gone by without another event happening! Everyone of my siblings has a pm/icd except one brother. i am one month post op and have had some anxiety issues, but the more i get out little by little and walk the dog, go to the store etc... things seem to be calming down! Not sure if we can talk about this but, my faith in God has helped me as well! 

Suggestion

by Gotrhythm - 2019-07-10 14:11:22

The replies above are so entirely excelant that I have only one thing to add.

You might try giving your pacemaker a name. It sounds s little silly, I know, but many people find that naming it helps.

Your pacemaker is your friend.It's only right that the two of you should be on a first-name basis.

 

Very interesting

by AgentX86 - 2019-07-10 16:09:53

My pacemaker didn't phase me a bit. Neither did my CABG surgery but MS would completely freak me out. Just shows how different people can be. You certainly have my respect, for dealing with all of what life has thrown at you.  Your husband,  too. I'd be lost without my other half. She plays bad-cop really well when I'm in the hospital. I don't have to worry about the trivia.

You know you're wired when...

You have a shocking personality.

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