Is pm a private matter?

Hi all,

I'm a new member to the site from Finland. I'm 33 years, male, and I have AV block 3, and it was diagnosed about 6 years ago. A PM was recommended from the beginning but I have been reluctant to have one. I haven't had any major problems with my health, although now I maybe understand better why I never was the best in any sports in school. 

After the diagnose, I have been regularly tested to find out if there are any changes to HR. (Holter, ultrasound etc.) Now we are having our first child in March and I finally agree to have the PM just to eliminate the sudden death risk. I have asked that the procedure will be done after the birth, so I wouldn't have too much stress at the same time.

I have many fears and anxiety about the whole PM thing. Especially the mental side of it. I have never thought myself as a person with heart problem. With a PM I think the condition will be reminded daily by the apparatus in my chest. And other fear is the social side of it. I don't want to tell about the condition to anyone outside family. I don't need the pity or the curiosity of co-workers and others. I don't know what to think, my head feels like bee's nest, all thoughts buzzing and jumping around.

How have you managed the situation and have you had similar fears? 

T


10 Comments

Common questions

by Theknotguy - 2019-01-18 12:37:15

Your questions are very common.  Most of us don't think of ourselves as having heart problems until we ended up in a hospital and came out with a pacemaker.  Same for me.  I was walking in the woods with the dogs when I collapsed.  Woke up six days later with a pacemaker implanted.  Quite a  surprise!  I knew I had heart problems, just didn't think I'd need a pacemaker that soon.  

It is very hard for people without the foreign object in their body to understand what it feels like to have a pacemaker.  At first you are constantly  reminded you have a pacemaker.  After a while, you go about your life and forget you have it.  It becomes part of you and is mostly out of mind.  I am reminded of mine more often than others, but I'm on this forum so am reminded.  Of the ten people I know with pacemakers, nine of them go about  their lives rarely thinking about their pacemaker.  They are reminded only when they have to go to doctor visits.  

As far as other people knowing....  Aside from your spouse, children, doctor, and medical people, no one will know you have a pacemaker unless you tell them.  There are no outward signs unless you are swimming and they see the scar.  Even then they might not know what the scar is for.  And, for most of us, you can barely see the scar.  I volunteer in a hospital and most of the people in the hospital are surprised when I tell them I have a pacemaker.   Otherwise they would never know.  So there really are not any outward signs of having a pacemaker.  

The benefits outweigh the negatives.  Your heart beats better, you have a better blood supply, and you feel better because you have more oxygen in your body.  If you look around the forum you'll see people with pacemakers doing almost everything people without pacemakers do.  We even had a person who did skydiving with a pacemaker.  So the pacemaker, in and of itself, isn't a hindrance to a normal life, it's a help. 

I hope this has answered some of your questions.  My best wishes for your future.  
 

Thanks for the reply

by MarinerT - 2019-01-18 13:10:53

I'm sure this forum helps me a lot. It's quite hard to put your focus to the benefits of pacemaker, when your emotions trigger only fear. Fear of death, shame, unknown.. And then I try to think that, this isn't a big deal, people have survived much worse things. But the only person I know with pacemaker is my granny. And that's one of the hardest things to swallow. I'm sure that almost all young patients have these kind of feelings. And I hope here I can find and write with people who have gone through similar situations.

Heart problems

by Theknotguy - 2019-01-18 17:02:32

Heart problems occur at any age.  We have children in the womb who need pacemakers, and the gentleman who sits next to me in church, at age 94 needs one.  So age isn't necessarily a factor in heart issues.  

What IS a factor is treatment.  I was walking the dogs in the woods.  If it would have been 1993 I would have been dead.  Since it was 2013 medical treatment had advanced enough that I survived.  So, if you have heart issues and there is an accepted treatment that will extend your life and make it better, you should make yourself available to it.  Risk is risk.  Ignoring the risk may seriously shorten your life.  And remember, if you live in a third world country you wouldn't necessarily have the option for a pacemaker.  

The newest pacemakers fit inside the heart and last for at least 15 years.  You may qualify for one.  Implant of the inside-the-heart pacemakers is via artery placement so they no longer have to open the chest.  Faster recovery, better life.  We still have the big, bulky pacemakers for those who need advanced features.  Technology is great when it works.  

We see people wearing glasses.  We don't think a thing about it.  So having a medical device to be able to see better is universally accepted.  The pacemaker is a medical device for the heart.  

I too did not like having to rely on a pacemaker to live.  But my other option was being dead.  And being dead is no fun at all.  
 

There are worse things than needing a pacemaker

by Gotrhythm - 2019-01-18 17:45:28

You are really loading a lot of emotional meaning onto having a pacemaker. Realizing that you have a heart that needs a pacemaker to keep going is a lot to take in. Everyone has feelings, doubts, anxieties, but your feelings seem out of proportion.

There's no shame in having a pacemaker. It doesn't mean you are a cripple and having a pacemaker in no way cripples you. Nothing you did caused the problem, nothing you could have done would have prevented it. 

You might want to seek some counseling around needing pacemaker so that you can approach  it more realistically. Also you need clear goals around what a pacemaker can do for you.A counselor can help you face your fears, figure what's rational and what's not, and help you toward a more positive outlook. 

Do check our archives. You will see that not all of us are grannies. We have people your age and younger in our membership.

Reasonable advices

by MarinerT - 2019-01-19 03:53:40

I appreciate your views and thank you for taking the time to answer.

I have talked with my wife, and she supports whatever I decide on the matter. But maybe you're right, maybe she has to handle more stress than I acknowledge and stiffs up the lip for me. 

I have a meeting with cardiologist on Tuesday, so maybe I can talk about the schedule and counseling there. Also I haven't heard about any inside the heart pacemakers, I wonder if they are available here in Europe. And I also am aware that it is a privilege to live in a country, where medical care is done with high standards and is practically free. And a welfare state gives even the poorest people free education and healthcare so I am not so worried about economical coping of my family if I die, but I think I would be a valuable asset in the child's life in many ways.

But I do not have the strength to raise awareness of heart rhythm problems and be a thriving example. Maybe some day, now it is just too much to handle.

And I do realize, that here are people of all ages and I have not ment to be disrespectful in any means. I am curious about what and who is here, because the similar communities are few and small in my native language. I have  a lot to learn.

MarinerT

by Theknotguy - 2019-01-19 07:19:00

There are people I worry about.  

You are not one of them.
 

Focus on positive

by Gotrhythm - 2019-01-19 16:17:41

I was writing in a hurry when I first answered your post. 

What I wanted to say is that a pacemaker will do more than prevent fainting or sudden cardiac arrest. It's probable that you will feel better than you have in years.

Nobody can make specific promises because everyone is different, but you realize the heart issues limited your ability to excell in sports. It's probable that the condition has been holding you back in others ways. 

You have many years of life ahead. Suppose you felt better all the time. What goals might you have?

Best wishes for a bright future. 

Me too!

by Newbie4444 - 2019-01-25 09:30:03

I completely relate to your difficulties in wrapping your head around the fact that you are now a "pacemaker patient" with heart problems. I am struggling with the same feelings- I was always a very healthy, active individual and recently discovered I have ocassional episodes of complete heart block. But other than feeling lightheaded when they happen, I have been coping just fine with these for about 12 years, so it is hard for me to bite the bullet and get the pacemaker.

Some things that are helping me process this that might help you too: I am in my thirties also (37) with small children so I am telling myself my life isnt really just about me anymore. I would feel completely irresponsible if I say no to the pacemaker and end up not only killing myself, but one of my children in a car accident or falling down the stairs while holding them, or something serious like that. Another scenario, I would feel awful leaving my children without a mother over something like this that could have been prevented with a pacemaker. (I know this sounds extreme, but we have to think like that). So these things into consideration, are helping me to humble myself and try not to worry about the pity and thoughts of others- what others think of me is nothing compared to the gamble I would be taking on my life/kids lives. But I do think your feelings are completely normal- it's hard to wrap our identity around having a pacemaker.

One thing the doctor did make me feel better about that you might want to ask about--- he said they could get a plastic surgeon involved and place it under my muscle so it won't be as pronounced (and hopefully not as much as an everyday reminder for me). Although that is initially more painful. Good luck with whatever you choose, and one piece of advice.... I would recommend getting it done before- (not after)- your child is born. Life gets much more stressful after baby arrives and your wife will need your help,.. trust me!

inside the heart pacemaker

by Newbie4444 - 2019-01-25 09:39:28

Oh one more thing I forgot to mention- my doc yesterday ( I am in the USA) said there is a new technology that has been out for about 3-4 years now that is an option. They slip a little pacemaker about the size of a pea up into your heart through a vein (so no scar) and it stays there for life. Problem is, once its in there, it's in there for life and cannot be removed for any reason. So, when the battery runs out, they just slip another one up there. As you can imagine, for someone in there 30's, that could mean running out of room in the heart chamber over time. Also, new technology scares me because there arent long term studies on it. But could be another option for you to consider... he also said I could have this little pacemaker put in first, and when it comes time to replace it (7, 10, 15 years, who knows) they could then replace it with the traditional pacemaker (i'd be older at that point and maybe be more ok with the visible pacemaker).  Just options you could ask about....

Good points Newbie4444 and update

by MarinerT - 2019-01-26 13:00:23

Thanks for the message Newbie4444. It's nice to hear that I'm not alone with the thoughts.. I have processed the line of possible events in similar way to have the decision little bit easier for me. And I hope that somehow the pacemaker would make me feel even better than now (even though I don't recognize feeling bad at the moment).

I met with my cardiologist, and agreed to have the pacemaker. However, the inside the heart model was not an option for two reasons: 3rd degree av block needs to be paced with two leads, one for atrium and one for ventricle. And the leadless inside the heart model cover's only the ventricle. Other issue, as you mentioned, is that there is no technique to remove the leadless pacemaker, so they don't install them on younger patients. (Because the ventricle would eventually

fill up of pacemakers) So it'll be "conventional" two lead model.

They still want me to go to MRI scan before the pacemaker surgery, so that there is no shadows or obstructions in the scan. It is scheduled 1st of February. And I'll have the pacemaker later on February. So yeah, if all goes well, I'll have it before our baby is born.

You know you're wired when...

Your device acts like a police scanner.

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