Regrets

Leadless PM

by Penguin - 2023-09-15 12:55:26

Hi, and welcome.

You sound very confused and full of regret that you've not ended up with the latest technology - one of the leadless PMs.  It also sounds as if you still haven't resolved the doubt you felt about getting a PM in the first place.  Perhaps, when you go back for your first checks you can discuss how you feel with your doctor and he can go through some of the data with you more thoroughly?

I have a similar diagnosis to you and I'm not entirely sure that I would consider a leadless device yet.  I'd like to see what happens a few more years down the track with the new dual chamber leadless PMs first. New technology often has niggles and tweaks to it's design and being one of the first isn't necessarily the best place to be in.  I'm going to sit back and see what happens.  I don't want to be a guinea pig. 

It would be great to start your pacing journey without the complication of leads (perhaps) but given the confusion that this decision has already caused you why don't you see how you get on with this device first?  At least the PMs with leads are known in terms of how they perform.  That's a little bit more certainty in your life and perhaps that's a good thing for you?

You have a long time to get used to pacing, it's terminology, benefits, risks and how it makes you feel before you will have to make such a difficult decision again. Believe me, that's a long journey in itself! 

10 days post implant is around the time when most people, who didn't feel convinced about their PM, begin to feel a bit down about it.  If the feelings continue find someone to talk to about your concerns or continue to air them on here.  Some people feel happy to get a PM and feel much better, but for others it's an unwelcome surprise .  We're used to a whole range of feelings on this forum and understand all too well that the decision isn't always easy. 

It's a process of acceptance unfortunately. If we can help keep posting. 

Best Wishes

Leadless PM

by texasheart - 2023-09-15 13:28:47

Penguin...thank you for your response. I am confused and angry. It wasn't so much as in the latest tech as compared to what the latest tech provides when compared to coping. The latest tech is something you don't have to look at day after day, let alone feel for what seems like every second, and is naturally protected by ones rib cage, with extremely quick recovery. I've read where it won't be long and I won't even know it's there, but at this point, I find it hard to believe. You posted that some are happy to get a PM and for others it's an unwelcome surprise. It is definitely unwelcome, even though as I posted, I've known about the possiblity for a while. How could a doctor spent 5 minutes looking at a chart, ask minimal questions, and implant the device 11 days later? There has to be more to the story. The reason why I'm mad at myself for feeling the pressure to "just do it." My concern for that is I know that most cardiologist can put in a PM easily, but it's the care after that that becomes a concern in itself. The doctors that are trained to handle complications, even as "rare" in the sense of implantations, is a concern. I know this exist for the leadless as well,but the complications for them, at least at this point in the game, is a lot lower than the traditional transvenous pacemakers. We all get older, and in return care gets more difficult. I can say that my surprise of everything is that the ecocardiagrams all showed the structure of my heart to be healthy, so was I a victim of medical company representatives pushing a certain tech with a cardiologist who doesn't hesitate to implant them, even one with a long track record? Again, thank you for replying. I joined because I need to hear from others. I mentioned my wife pushing me for care and mentioned that she has her own set of health problems, but at this point, that consist of medication, and the adjustments for that are a lot easier than wires being stuck in your heart. There goes my anger again, please forgive me.

Hi

by Lavender - 2023-09-15 15:38:26

Welcome. You are heard. I read everything twice.  Ok now what I tell my sons:

We cannot go backwards. We can only go forwards. 
 

Regret is never helpful. It's counterproductive. We can learn from our past. We can't change it. 
 

Your family was also affected by your medical journey. Please start making it easier on them. Stop complaining to them. Accept. You're new in the healing and mental healing takes longer. You're a smart guy because you sought support and found us. 
 

My heart structurally is great. Not a thing wrong. I have a rare arrhythmia that is the problem. Medical professionals couldn't find it for months because all my tests are NORMAL. I could've died and no one ever suggested a pacemaker. 
 

So here you are. You're mad. Your body is sore. You don't even believe you needed this. But here it is. 
 

It is not going to hurt you. It's a security backup. A medical pro advised it and whatever evidence they showed was enough for the insurance to approve it. They don't do that lightly. 
 

Here in the USA, we are usually seen for wound care in a week. After that, I was seen at five weeks post surgery. At that appointment-I was able to ask more questions. I saw my cardiologist as well as a pacemaker tech. Adjustments were made to my device which made me feel better. 
 

Yes I was mad and depressed that I needed a *#!! pacemaker!  I was angry that it hurt. 
 

One day that friggin box in your chest might just save your life. Good for you for getting this out here. It's good therapy.  Just don't linger and fester, ok buddy?❤️‍🩹

Your Opinion

by Good Dog - 2023-09-15 16:16:27

I hate it when I am wrong and I'll bet that you do too. You said; "My opinion has always been that if I don't let a problem get in my head, it will resolve itself". When it comes to our health, that is just plain wrong! Sometimes you have to deal with it, because if you don't, it could take you down! Sometimes you canot help, but to let it get in your head.

The good news is; that you did deal with it! I got my pacemaker 37 years ago at the age of 38. I went through some pretty serious depression until I realized that there are people out there with pacemakers that live absolutely normal lives. I had the same condtion as you. I could not have lived a normal life without a PM. When I first got it I hated the damn thing in my chest and the incision that botherd the shit out of me. However, after a few months I finally came to terms with the fact that I needed it. However, I was determined that I would not allow it to define who I was. To the extent I had control, I would not allow that. I had no restrictions, so I was going to do whatever I wanted to do. I started playing basketball at 6 months and was amazed that although a little out-of-shape, I could run my ass off. I eventually played pretty competitively. Baseball too. There were times when I was running and would stop to take my pulse only to find that it was so high it was almost unreadable. My heart was actually beating on its own. I knew that, because the PM max rate was 140 bpm and my pulse was over 160.  My point in all of this is that you too have to come to terms with your PM at some point. You can do it on your own terms, but just do it. I am sure in time you will realize that it can be your friend. It can give you a better life then you had before, but you have to give it a little time. Looking back 36 years I can tell you that my life has been completely normal. However, there are only two reasons that it has been normal; first and foremost is, because of the pacemaker. My life could not have been normal without it. Just as important though; it was, because that is what I wanted. You will find that there are lots of people here that although they don't say it, they are not allowing the PM to define who they are. We have a lot of athletes among us here. You also need to realize that what you read here is not typical for most people with pacemakers. The vast majority of folks with pacemakers have few if any issues and live completely normal lives. The vast majority you see on this site are a very tiny minority of thos that have some issues. With most, that is the only reason they come here.

I am glad you found this site and hope that you return to keep us posted with how you are doing. There is a strong likelihood that you can help-out someone along the way if you choose to. I wish you nothing, but the very best!

Sincerely,

Dave

Thank You

by texasheart - 2023-09-15 17:14:02

Dave, as I said to Penguin above...thank you. The words of encouragement I hope will help me as time continues to pass. Some of the remorse I am experiencing probably stems from me not asking all the questions I needed to after meeting the last cardiologist. The process was "fast," way too fast I feel as I look back. Could it be, "What else could he say at this point in the process?" Maybe, but I was so focused on trying to get something done, that maybe a referral up to a larger city, with better facilities, could have enlightened me, and at the very least made it so that these thoughts didn't cloud my thoughts. Seeing people here talk about their experiences of passing out must have been scary for them. For me, that wasn't happening during the day for me. Could it have gotten there? Won't ever know. Hearing your story, as well as others I've read, are truly helpful. Thank you.

Ken

fast implant

by new to pace.... - 2023-09-15 17:54:33

I was told on a Friday that a needed a pacemaker.  After wearing the heart holter.  Was told i had pauses a long with a slow heart beat.  Which i knew and no one did anything about it.

  I said could i have it implanted at public hospital.  Told i had to wait until mid Sept.  If i was willing to have it done on Wed.  I said i was planning on going away that weekend.  Asked my acpuncturist what i should do, said have it done Wed.  So i did.  Best thing that ever happened to me.  As no more falling.

new to pace

Deja-vu

by athena123 - 2023-09-15 19:27:50

Texasheart, this sound like me because back in 2019 i was working out and i went into afib at that time. my pcp put me on a 24 hour monitor and i was told i had sinus pauses like yourself. I was in the hospital for 3 days on a cpap machine which actually reduced my pauses but the doctor at the time was persistant in giving me a pacemaker. My jaw almost dropped to the floor because i too had had sleep apnea, which if it goes untreated can very wll cause afib like it did for me. Now, im not saying if you need one or not but come to find out doctors do recieve a bonus money for putting in a pacemaker. When i saw the bill it was 39,000 for pacemaker and procedure. We all want to think doctors have our best interest at heart( no pun attending) but once my cardiologist moved practice i saw an EP specialist in Boston who questioned the need for a pacemaker for my situation. With the pacemaker came anxiety with me and maybe in your case because it does have a profound impact on your life, mentally. I just couldnt accept that i needed one and knowing I had this inside my body made my anxiety go through the roof. But over time i did get use to it and after 4 years i feel like sometimes its not even there. My pacing for my atruim is less then 10% while pacing for my ventricle is at <.01. The numbers are relatively low and I did get a second opinion at brigham and womens in Boston. But one thing i do have is slight afib that has been going on off and off since february. The doctor i have now wants to treat it with fleccidne but i ask myself if i want to be on medicine all my life. So, i did get a second opinion from a specialist at Brigham and womens who said I be a perfect candidate for an ablation. This specialist also was talking about maybe removing my pacemaker but i opted for medicine with my first EP. The point is i wasnt too sure what to do thats why the second opinion. Some doctors are not on the same page and some doctors are. lot of soul searching is involved you need to find the right EP who you can be comfortable with. So for know im staying on medicine and fingers crossed. Good luck with you and try relax and breath deep, your going to be fine. It might take a bit where your comfortable, but you'll get there. 

Yes

by texasheart - 2023-09-15 20:24:17

Thank you athena123. I have so many questions bouncing around in my head. I will be writing down a list of questions about the device and about the course of treatment taken. My wife keeps saying look to the positive. I've had a couple of friends from my Bible study do the same. Always easiest from those who don't have one. Today someone I was introduced to today was at my house to give me his story. He seemed to positive and calm. A Godly man who tried to point me in the right direction, and to keep my eyes on what is important. I heard everything he said, and I acknowledge truth from his words, but my thoughts still run wild. I still feel the need was quick from a doctor I just met. Maybe he's right, but I have questions that must be answered. I'm going to have to seek out a good EP long term. What will the future hold with further developments is unknown. I want to be positive, I really do. Thank you again for listening and responding.

Yup

by BradyJohn - 2023-09-15 22:42:56

Hey there Texasheart, 

There are elements of your story that I really relate to.   Bradycardia.  I used to be proud of a resting hr of 32. 29 once!   I was a fainter, especially after standing up 'too quickly'.  The people around me who love me were more concerned than I was.   Finally the reality that I have a humanheart caught up with me.   One thing to give some thought to is that our culture's myth that men should be strong,  invincible and never need help is just that,  a myth.  So, like it or not you needed help and help was there.   Again,  it is hard when we feel rushed or pushed,  but if people were saying you looked like you were aging,  something was going on. 

So, welcome to the club,  and maybe get a really cool tattoo right over your pacemaker. 

Peace my friend, 

John 

PS, 3 1/2 years later,  I rarely remember my pm is there, but I am thankful everyday for this compassionate gift of God

Thank you

by texasheart - 2023-09-15 22:54:00

Thank you John. The rushing really gets to me. Maybe I don't understand the technology either, but I originally asked about a leadless. Told I wasn't a candidate with the Medtronic by the doctor, and a lot of questions lie there for me to ask. Was he sure, or were there assumptions on his part, or was it insurance due to cost differences? I do understand it is in, but fully understanding my position I feel is necessary as part of the healing process. I have to say that I haven't felt better, matter of fact, I've felt worse. Questions and more questions on my mind that feed the regrets.

pacmaker

by new to pace.... - 2023-09-16 08:35:16

Before all operations.  A consent form has to be signed by you.  Since you must have done so.  It is now implanted.  Takes a couple of weeks to heal from any type of surgery.  See how you feel then.  While healing go out an do some fun things with your wife. Take walks and see the beauty of the trees/ flowers.

new to pace

The next step

by Gotrhythm - 2023-09-16 13:41:36

I could identify with your post.

I really, really did not want a pacemaker. I flatly rejected it--rejected the whole idea--knew there was a way get better in my own way that didn't include sticking an electronic device inside my body! And I would just get to work and find it, and/or wait for it to go away, whichever came first.

But even after I accepted that I needed one and it was implanted, and immediately felt better, and had objective evidence that I was better---even then, I still didn't want it. 

I was always aware of it, and I hated being aware of it. I couldn't tell you what was wrong, but something was. There was just something wrong with having this alien thing in my body. Creepy. Yes, I knew it was helping me, and I still wanted it gone.

But like you, I recognize that consciousness does interact with the body, and that at this point, since I already had it, emotionally rejecting the pacemaker was not a good thing. For my own good, I had to find some acceptance, some peace with the fact that I had a pacemaker.

What I did ( others have also done it) was give my pacemaker a pet name. I called it a French endearment which means, "heart of my heart." That felt appropriate for me. One member named his "Surge Capacitor," one "Sparky." Use the search function in the upper right corner--some say it looks like a magnifying glass, looks like a Q to me. You'll find other pacemaker-naming stories.

Don't know why this works to help you move on, but somehow it does.

I've told you this story to show you, you are not alone. And to gently nudge you to move on now. You didn't want the pacemaker, but now it's real. It's here. You have it.

When I read your post, I hear a lot of anger because you feel something you didn't want was forced upon you. I get it. But that anger is about the past.

It seems to me that the problem you have now is that you don't feel better. And really, you should. A pacemaker isn't about making you live longer, although you might. It's purpose is to make you able to live better with the heart condition you have.

When people start to feel better varies enormously. In my case I felt better instantly. Some people take the best part of a year. So I can't tell you specific actions since I don't know your situation.

But I can tell you this: Pacemakers are just electronic devices--like a cell phones or laptops. They only do what they are programmed to do. The right pacemaker settings can make all the difference. The first question should be, are my pacemaker settings appropriate for me? 

So get busy. Anger is energy. It's power. Don't repress it or try to stuff it down. And don't waste it on a situation that has already happened and is over and done. Don't waste it by flinging it at your doctor or you wife. Use your anger to movitate yourself to demand the positive payoff of feeling better that you were promised! 

I want to hear more

by texasheart - 2023-09-16 14:18:42

Gotrythm, I want and I hope you do post more to your comment about my post. Every morning I wake, and I wait to get some sort of revelation that will help me turn the corner. Last night I moved about more upright than I feel I had the proceeding 10 days. All I could do is seem to feel that thing under my skin. I can accept that I have bradycardia, and have most of my adult life. I've always been active, rarely had to seek medical interaction. I  would say that I was mainly asymptomatic. I would say mainly because there were times I felt more tired than I should have, maybe even wanting to take a deep breath at times. I say, at times, because it wasn't what I would call often. I never passes out that I'm aware of. While sleeping, there were recorded pauses, but not a large amount, and the duration varied, but I question if that was a major problem. Yes, I did get observations from others that I looked run down, mainly from my wife. Was I so intend to fix the situation that I took it to an extent to far? Wearing my smart watch, yes many nights my O2 saturation rate dropped lower than normal? Yes, yes it did, but it did go back up. My bpm would drop into the 30s many, many times, but only in my deepest sleep, with the exception of once that I know for fact when I was awake. Even then, I didn't pass out, just felt tired, but the rate did go back up. I would dip into the 40s many times just by relaxing and thinking, I believe my heart rate is in the 40s, and it was, but it would go back up. That happened after getting my pacemaker put in as well. So, now that I have this thing in and feel it constantly, at this point, have to question whether or not this was the right move at the needed time of now. My wife loves me, and means well. She was a driving force in this, and all test did indicate my heart rate would get low, I had no problem raising it, especially during physical exertion. So, why did an EP say yes, do this. I'm not mad at him, just mad I let him say now is the time. I didn't make him take a second and reevaluate. If I had the leadless, I might not even question it because I wouldn't have a visual and physical reminder daily. If a mistake, they just turn it off easy enough. So yes, I'm like, "Why, why, wh?" I'm sorry for rambling on, and I really would like to hear more of your story.

Looking forward

by Gotrhythm - 2023-09-16 16:37:17

Texas Heart, my post is now there in it's entirety.

I identify so much with your story. I too had bradycardia, and I get how hard it is to comprehend a heart that's sometimes too slow, and sometimes, works just fine, thank you. So let's concentrate on the part that's fine, right?

Unfortunately, it doesn't quite work like that. But really, that's a discussion for another time.

For now, I'll just say it's time for you to deal with the present. It's like there's a doorway to the past, and you can see through the doorway into the past. But even if you think things went wrong, you can't go back there. And nothing you think about the past will fix it.

The leadless pacemaker had not been invented when I got my first pacemaker.  Still, it sounded like a good thing to me when I first learned about it. So I checked it out so that when I needed a new pacemaker I could get one. Unfortunately, I learned, they are not for bradycardia. They can only help a different kind of arrythmia--one (happily) we don't have. Trust m, if you have to have an arrythmia, bradycardia is the best one to have. It's actually the easiest problem for a pacemaker to deal with.

Leadless pacemakers for bradycardia are in the works, as I understand it. Maybe they'll be available by the time your pacemaker needs to be replaced and you can get one then. Instead of mourning the leadless pacemaker you missed out on in the past (but which probably would not have worked well for you) look forward.  Plan for the leadless pacemaker that may be possible in your future.

But that will, hopefully, be 10 years or more away. In the meantime, you have 10 years of a life that can be as wonderful as you are willing to make it. A regular heartbeat is a beautiful thing. You have one now. Rejoice, and be glad.

I stand by what I said before. Focus on what you need to feel good now. Fix that.

Try not to let your regrets become a habit

by akaDM - 2023-09-16 17:29:42

"yes many nights my O2 saturation rate dropped lower than normal? Yes, yes it did, but it did go back up. My bpm would drop into the 30s many, many times, but only in my deepest sleep, with the exception of once that I know for fact when I was awake. Even then, I didn't pass out, just felt tired, but the rate did go back up. I would dip into the 40s many times just by relaxing and thinking, I believe my heart rate is in the 40s, and it was, but it would go back up."

The job of the heart is to pump oxygen and nutrients around the body to organs that need them. Looking tired because of bradycardia means that it's not doing well enough. Your pulse might have picked up, but that doesn't prove that the reduced oxygen supply did no damage and nor does it show that future episodes would be no lower and no longer. The purpose of the pacemaker is to remove these risks.

I hit those levels of bradycardia on a Thursday evening. It did not pick up. I drove to the doctor late on Monday, had an ECG and was told to go to A&E immediately. I drove home (doctor didn't say I shouldn't) and my wife took me to the hospital. I was admitted immediately, not allowed to stand or walk and attached to lots of monitors. Taken to Cardiology that night. Various investigations and a pacemaker was inserted that afternoon. When they started to talk about risks and consent, I asked if there was an alternative ("no" - which I knew already), so I asked just to sign it; if they'd suggested a 3 lead PM, I would have asked why; if they'd suggested leadless I would have questioned them thoroughly - I'd need to be persuaded that I needed something new instead of a long-proven technology. Took a few weeks for the various pains etc to subside (I seem to have been lucky there), I pushed myself with exercise (long fast walks mostly) and told the EP at my review that I felt that I was hitting a wall. They adjusted the settings and I've been okay since. Not as fit as I'd like to be but I expect that to improve with exercise.

My heart is apparently structurally fine, I had few problems prior (one faint from orthostatic hypotension about 15 years before, and one more about 2 years before, occasional light-headedness), diagnosed with LBBB on a routine ECG about 20 years before (fully investigated, no abnormalities identified). They have diagnosed complete heart block, so I'm 100% paced.

You don't mention checking your blood pressure. I had found that episodes of light-headedness usually coincided with low blood pressure. I'd assume that your bradycardia might have been the same.

I can't tell from what you say whether your not feeling better is down to psychology or physiology. Once you have your review, you need to make sure that they change the settings to suit you. That probably means that you need to be able to describe precisely what doesn't feel right to help them know what to tweak. Ideally you would talk about your feelings about it in a different session to different people, but I don't know if they are able to give you the opportunity to do that.

Symptoms

by texasheart - 2023-09-16 18:32:57

I appreciate your candid response. Other than feelings, there have been plenty of physical symptoms. So I wouldn't try to go off of memory I recorded all symptoms in the Medtronic app. BTW, blood pressure wasn't low, actually higher than normal with swelling in hands and feet, and dizziness. At my visit next week, I'll lay it out for the doctor.

Hope your visit to the doctor goes well

by akaDM - 2023-09-16 21:16:44

High blood pressure during an episode of bradycardia isn't common. I would have expected your earlier doctors to have commented on it. And maybe even have commented on your episode of tachycardia.

But if you're physiologically worse now I'd expect that they would look to change something. Especially if you have had bradycardic episodes since having the pacemaker. (I assume you checked that manually - smart watches can't be trusted to be accurate.)

Hopefully you will be feeling better soon.

Regrets

by StephanieRae - 2023-09-28 17:06:48

Hi! I very much relate with how you were feeling regretful about having a pacemaker. I feel different and deficient and I don't know I just don't feel the same. I feel worse than better. I have had high blood pressure for awhile and I posted on the site earlier about changing my cardiologist, which I'm still in the process of doing, but I have I always monitored my blood pressure and one day (I missed 5 days of taking it) my pulse was at 40 which is low. I'm usually 78 or 80 something but I had just lost my dog. Also had a break up and so was grieving pretty hard, but I was advised to go into the ER so I did eventually go there. They admitted me because they wanted to keep an eye on my low pulse thinking it might be one of my blood pressure medication's atenolol.  So I went in on a Thursday and Friday a PA for the cardiologist I was assigned to came in and basically told me we need to do an angiogram to make sure that your arteries are clear and then if they are we will advise to do a pacemaker, if not, will put a stent in and then advise the pacemaker. I never had any symptoms of weakness or fainting. I never thought I would ever need a pacemaker. I never had any issue with that so I'm still psychologically dealing with it.  I feel like I have anxiety which probably doesn't help anything and that my pulse rate has been so much higher like most days it's like in the 90s which feels not normal. I also have diffuse pain that's not terrible but like kind of radiates around that area but I can't get in to see the new cardiologist until the end of October. There's a whole long story there, but I just felt that the current cardiologist I had in the hospital was very slow to respond to anything, and I had everything happening to me so fast I felt I had no choice. I certainly wouldn't have chosen this cardiologist. So I am definitely feeling my regrets and I will have questions when I finally get to go in to see this new cardiologist. Thank you for posting your rant - it's nice to know that others understand.