How do you manage worrying?

First of all, I appreciate that I'm relatively well among members in this club. I have an AV block but otherwise a structurally sound heart and in good general health.
 

That being said, getting the pacemaker is still something I'm processing mentally. I've known of my AV block for decades and the possibility of a pacemaker in the future but I thought that would be decades yet to come until recently when I was told that the risks associated with my condition now were deemed higher than the risks associated with a pacemaker. 2 weeks later I had my procedure.
 

I'm recovering well and getting used to the sensation of having something in my body and getting paced (the EP will look at settings in a week for the latter), but now the mind looks ahead to hopefully many years of living with a pacemaker and the main worry being the risk of infection.
 

How do you manage thinking about these risks? I generally feel a need to understand things but am not sure whether knowing the stats will do me any good. Is it better to live life and try not to think about it?


7 Comments

Keep risks in perspective !

by IAN MC - 2023-07-23 14:00:47

John, I assume you don't spend your days worrying about being run over by a truck or being hit by an asteroid.

Your health risks have been greatly reduced by moving from living with AV block  ( that WOULD worry me  ) to living with a pacemaker. Try to celebrate that fact.

I have been artificialIy paced now for 13 years and can honestly say that I have NEVER given a second's thought to the likelihood of developing a pacemaker-related infection or to any other unlikely scenario.

You said it....... live life and stop worrying !

Ian

worrying

by new to pace.... - 2023-07-23 14:32:17

It is easy to say do not worry.   remember you do not have to worry anymore about whether you are going to get a device or not.  It is done now.    Most of us forget we have this device.  I know i do not think about it anymore.  It  is doing what it is suppose to do is keep you able to go out and keep doing fun things, travel etc.     

new to pace                                                         

Post traumatic stress

by Lavender - 2023-07-23 19:14:50

John, you're traumatized. Your brain is saying danger!!! You're trying to be hyper alert and onguard and prepared to try and make sure you're safe. Been there. 
 

I was told in 2010 when they discovered my left bundle branch block by accident-that one day I might need a pacemaker. That thought was in the back of my mind but I thought it might not happen because I felt great. I figured if I did need one, I would be in my 80's. 
 

In 2019, my heart stopped during gallbladder surgery when they brought me off anesthesia. I was in the ICU there and was told that I would need a pacemaker if I started fainting. I responded that was for old people and that I was not old yet. 
 

In 2020, I started fainting. Heart tests were all good so I was sent on the merry go round of other specialists and had all kinds of tests on my brain, stomach, endocrine system, diabetic tests, vestibular, yada yada.  I fainted for three months and got more and more scared and reclusive. Meds were tried that made it worse. I stopped eating much because it was thought to be food allergies. I fainted dead away alone in a back aisle of the store. I was having a near death experience when my heart recovered. No one around. I stopped being alone. I stopped driving. 
I requested an EKG and was told it wasn't the heart. 
 

FINALLY three more months later, a very insightful neurologist told me to insist that I get a thirty day heart monitor. My cardiologist nurse said it wasn't necessary.  My pcp went ahead and set it up. 
 

Ten days into wearing it, I died on my livingroom floor. My alarmed boyfriend who knows no CPR saw me drop, heard a death rattling and thought I was choking. He punched my back hard which restarted my heart. It was a 33 second pause. I went to the ER and came home a couple days later with a CRT-P pacemaker. I have a rare arrhythmia called ventricular standstill. The cardiologist said it's hard to catch and some die before anything can be done. 
 

I came home terrified and feeling awful. My neck hurt, my arm, shoulder and back hurt. I was afraid to leave home, afraid to be alone. I didn't feel like "me". My heart was used to a slow beat now this fast beat felt like anxiety to me. 
 

I read everything about mortality after getting a pacemaker. My own brother had one and died while he still had his first one. (He was an alcoholic with major structural damage in his heart, not just electrical).  I felt that my days were numbered. I refused to go anywhere. I was sure things would go wrong. 
 

I got so anxious one night that I ended up in the ER with high blood pressure. I have normal low bp. What was happening was post traumatic stress disorder. At about ten pm every night, which was the time of my last near death experience, I would get an anxious anticipation that it might happen again. 
 

I take no meds because I have reactions to so many -and thankfully don't require any. So I turned to meditation. I listen to "Michael Sealey" on youtube. I put on headphones and lie flat on my bed and listen to self meditation tapes that strengthen me. I pray. I replaced negative worst-possible-outcome thoughts with positive affirmations:

I am well

I am safe

God sees me

Even when my heart beats for the last time, I will still be safe in paradise 

etc etc

I have had my device almost two and a half years. I didn't feel well until the seven month mark. I gradually started going places alone with me being in charge of how long I felt comfortable being away from home. I started driving alone. 
 

My life is more normal now. I'm not thinking of the future or past. I'm living today. My device has improved my ejection fraction to normal. I am 100% dependent on it. I haven't fainted since. 
 

Life itself is a risk. Why just pick your heart to worry aboutšŸ„“? That is fixed!

Your worry is NORMAL. Fight back. Listen to meditation tapes, and do it daily until the message sinks in and your brain backs down.  Go get a massage from a licensed therapist when your doc approves, and set up an appointment with a therapist for cognitive behavioral therapy if you feel that's something you may be open to! I get a massage every two weeks for body and mind. 

Worry

by piglet22 - 2023-07-24 07:14:14

Firstly John, it is what it is. Your consultant has deemed your pacemaker to be the best course of action.

Like a lot of people here, I had quite a few years (18+) to get used to the fact that this small device is helping you out every second of every day. It certainly transformed my health (complete heart block)

Imagine what it might have been like a century ago before electronics allowed us to have these devices.

I'm going to add a note of caution, though.

NHS pacemaker care is going through some changes which might be for the better or maybe not. All parts of the NHS service is under stress, and cardiology is no different.

You didn't say if you have a home monitor.

If you have, then this will take the place of the in person checkups that the old hands here were used to.

How you get on in future is going to depend a lot on who in your medical team you see. Some are very caring and some are not. I'm going through some difficulties at the moment and am struggling to get positive answers.

Maybe it's just my particular region, but to get anything moving, I've had to go through my GP and let them deal with cardiology.

Do as much for yourself as you can. Keep notes, get a feel for how you operate. A decent blood pressure monitor with recording can be a Godsend, as is an oximeter.

You certainly aren't on your own.

Worry

by Good Dog - 2023-07-24 08:00:48

John, I understand where you are coming from. I think that in due time you will have a realization that your pacemaker is an asset, not a liabilty. Some of us have issues that a pacemaker cannot resolve. However, for almost all of us, these devices are trouble-free and greatly improve our lives.

I have pretty severe tinnitus. It began about 15 years ago. In the beginning it not only worried me, but it made me crazy. My wife has had it most of her life. She told me one day that it doesn't even bother her anymore. She said; "there is nothing I can do about it, so I just accept it". "The ringing is there, but it no longer bothers me." She said; "just make it your friend, not your enemy". I tried that and it worked. It took a little while, but it worked. Now I just accept it as a part of me and it is always there in the background, but it is no longer an issue. It has become my friend and just a part of who I am. When I concentrate and think about it and wonder how to fix it; I can hear it. However, when I don't, it just fades into the background and it is no longer a problem. I once had a co-worker that developed tinnitus and it drove him crazy. Literally crazy. He started seeing a psychiatrist. The point being; he did that to himself. It isn't the adversity. We all have to deal with adversity. It is "how" we deal with it that matters!

You will get past this in time. I am absolutely sure of it.

I wish you nothing but the very best!

Sincerely,

Dave

living with a pacer long term

by Tracey_E - 2023-07-24 10:10:22

I also have av block, got my first pacer in 1994. For me, being educated was the key to acceptance. I may not like it, but if I can understand it, I can deal with it. My doctors all know by now that I like to understand, so they are good about explaining things to me. If they don't explain, ask. 

There are some long term risks to being paced, but as your doctor correctly said, the risks of not being paced are considerably higher. I can't control my need for a pacer, however I can stay active so my heart muscle stays strong, and eat well so that my arteries stay clear. I don't want to compound the problems I was born with by not taking care of myself. 

My understanding re: infection. We don't have a higher risk of getting something like MRSA, but our risk is the chances of it turning serious if we do get it. The way to deal with that is to react quickly if we see signs of infection. With the device, that would be fever, new pain or swelling, red streak, oozing. If we get a cut that seems to be getting infected, we should ask to be seen and treated immediately rather than watching to see if it gets better on its own. If we do have infection, it's important to get cultures so it can be treated aggressively with the correct antibiotic as quickly as possible.

This isn't something to lose sleep over, just be aware that if you see any signs at all, go be pushy about it being taken seriously. You'll learn that outside of a cardiology setting, even with your GP, they know little about pacers so sometimes we need to educate and advocate.

Being active and feeling good also helps me with acceptance and mitigating fear. Exercise great as an anti-depressant and anti-anxiety med! When I was first paced, the more I was able to do and feel strong, the easier it was to trust that the pacer was doing its job. Now after so many years, the pacer is just a part of me, a cool piece of technology that enables me to live a full, active life. 

I like to read up on the latest studies and keep up with the changes in technology. I regularly discuss my long term risks with my doctor and make sure I'm doing everything I can to control the parts that I can. And then I live my life. 

Ok, this is a silly analogy, but here goes. My roomba has been running downstairs. I can hear it but I'm typing and listening to music and texting one of my kids and making my to do list for the day. The noise is there in the background. I'm not giving it much of my attention but I'll hear if it changes or stops then I'll need to go check on it. 

 

Thank you everyone

by John_Locke - 2023-07-24 11:59:08

Thank you for all of your replies, it's been unvaluable for me during these last few weeks to hear about the lived experience of all of you who have been on this journey for longer.

For me, it all started this year with anxiety triggered by some recent life events leading to palpitations and (what was clearly in retrospect but not at the time) panic attacks. I was referred to a cardiologist to rule out any physical cause and lucky in that my wife has private health insurance through work which meant I was seen quickly and investigated throroughly. I don't believe that there's any direct connection between the palpitations and my AV block but it did lead to my block being looked at properly again.

Had I gone through NHS, I'd still be waiting for a 24h ECG. The last time I had a checkup for the block through public healthcare (many years back) I was more or less told that they didn't want to see me again until I started passing out.

I guess as many of you have suggested, I need to mentally reframe this as a life event that will help me live a long and healthy life rather than a burden. While I never did pass out before the pacemaker, I could often feel the sensations of my heart "restarting" after an AV block episode which was in itself a reminder of something being not quite right.

You know you're wired when...

Intel inside is your motto.

Member Quotes

I swim, scuba, garden, hike, climb, workout, play with the kids, play tennis, baseball, basket ball and rollerblade with mine with no problem.