Pacemaker Symptoms Questions

Hello.

 

My name is Ryan. I'm a 31 year old Male.  Last year I had 3 open heart surgeries to replace my triscuspid valve due to endocarditis.  Unfortunately the 3rd surgery caused the need for me to have a pacemaker as I had complete heart block.  My 3rd heart surgery was 10/31/2017 and pacemaker was installed 11/07/2017.  Everything seems to have healed up and I'm working every day to get stronger and healthier.  

 

I'm having some weird issues and found this forum and wanted to hopefully get some feedback from everyone instead of hoping to get any type of answer from my cardiologist during our 3 second appointments that are 3 months apart.  It's ridiculous how hard it is to get any type of help from doctors outside of being hospitalized.

 

Anyways

 

Lately my heart has been every so often been pounding so hard it actually shakes my body.  I can see my left breast shake and vibrate.  I've also been having edema in my legs on top of taking my Furosemide twice per day.  Also during some movements I get terrible sharp pains where the device is located.

 

If anyone has any insight, info, ideas or tips on how to manage living with a pacemaker it would be greatly greatly appreciated

Prior to last year I was an extremely healthy 30 year old Male and was never in the hospital once.  This has been one of the hardest things I've ever gone through in my life.

 

I'm also experiencing depression and anxiety regarding having to rely on a pacemaker for the rest of my life.  Every ache or pain it seems I'm convinced a lead has ripped out or im having a heart attack or something insane.

 

I look forward to hearing from people!

 

Thanks 

Ryan 


6 Comments

Third try is a charm

by AgentX86 - 2018-09-09 22:40:02

Three open heart surgeries in one year?!  Yikes!  You have my sympathies!  One per lifetime was enough.

First, you crossed over the line from using a cardiologist to an EP (a cardiologist with specific training for electrical/rhythm issues) when they implanted the pacemaker. Second, if you're having these problems DO NOT WAIT for the scheduled appointment.  If you're currently a patient, he should see you within a day or two.  You still need an EP on your medical team.  Insist on it.

It sounds to me like you now have Afib or maybe Aflutter.  It wouldn't supise me with all the work you've had done to you heart.  You may already be on an anticoagulant, given your valve surgery but you need to be on one, like now.

I can't help you much with the "tips on how to manage living with a pacemaker".  I just do it.  It's great!  Sure beats the alternative.  Do you have the same problem with your new valve?

Pacemaker Symptoms Questions

by rzimmerman30 - 2018-09-09 23:28:10

From what I've read on the internet it does sound like what is called afib.  Could you elaborate on what that is and how serious it is.  Is it just going to be a huge annoyance or is it something serious.  I just had my last echo 2 weeks ago and they said it is working perfect.  A 8 something gradient and 55 ejection fraction. So that's what's worrisome is the echo and my heart looked great so why all these symptoms. 

I guess tips and feedback I'm looking for from people is, is after a while do you completely forget the thing exists. Or will this have annoying symptoms for the rest of my life.

 

I have been incredibly healthy since my last surgery.  I exercise daily and monitor my diet and make sure its low in sodium and lots of iron and nutrients.  I also have stopped drinking all soda and drink around 64 oz of water daily.

I'm not an an anticoagulant, minus the 81 mg aspirin I take daily, because I have the porcine valve and not mechanical valve.

Anxiety

by Theknotguy - 2018-09-09 23:51:37

 Some people do get depression and anxiety after having a pacemaker implant.  It's probably harder for you because 30 year old people have a tendency to feel they are invincible.  It's really hard to get your mind around the idea you might not survive forever.  
 
 Maybe it will help if I point out that most people need glasses.  Unfortunately most of us are born with less than perfect eyesight.  No one thinks a thing of having to wear glasses.  Some of us have less than perfect heart muscles.  Others have problems because of injury or disease.  Think of the pacemaker as a medical device to help the heart.  
 
 If you continue to have depression and anxiety I would suggest talking with a psychologist.  Since I woke up from a six day coma with the pacemaker already implanted and was told to "deal with it", I decided to see a psychologist.  This one dealt in medical trauma (Yes there ones like that out there.) and was a great help.  
 
 I'm now able to do everything I was able to do before having the pacemaker.  Actually I can do more because I have a good heartbeat.  With the pacemaker you've got a long life to live.  I hope you can go out and enjoy it.  

AFib

by AgentX86 - 2018-09-09 23:53:26

AFib is an electrical problem in the heart not a structural problem. Your recent echo shows that your heart is structurally sound (as far as it goes) but doesn't say anything about the electrical systems.  That's why I strongly suggest you get an electrophysiologist on your team.  Cardiologists are the plumbers of the heart.  EPs are the electricians.

AFib, itself, is not dangerous at all.  However, any arrhythia can cause the blood to pool in the heart and cause clotting.  If one of these clots goes to the brain it's called a "stroke".  Not good.  A high percentage of these clots will go to the brain and most of the rest will go to the lungs, which doesn't have a good outcome either.  Antocoagulants prevent the clotting so will protect you.  Asperin is not a sufficient anticoagulant for this purpose.

The other problem that AFib can cause is cardiomyopathy.  This can be avoided by keeping the heart rate down during AF episodes. Drugs can usually do this without too much trouble.

So, given that the two common problems arrising from AF are easily treated, it's not all that dangerous if treated.  However, it can be a royal pain in the ass if you're "symptomatic".  It kept me from sleeping much of last year.  It got bad enough that I thought I'd have to quit working, which I didn't want to do yet. I still have AF/AFL but had an AV ablation so it wouldn't break through to the ventricles (therefore can't feel it).

Forget my pacemaker?  Why would I want to do that?  ;-)  It's part of me and I like it.  I don't want to forget me, um leg, either.  ;-)

You need to see your cardiologist tomorrow.  If it's AF, you need to get on an anticoagulant and likely a beta blocker to control your heart rate.  This is of critical importance.

Health Journal

by rzimmerman30 - 2018-09-10 14:13:45

I want to say I absolutely love the idea of documenting everything in a health journal.  I suspect some of my symptoms may possibly be stress related.

Either way what a fantastic way to exercise that control, as you said, to make my quality of life better.

As theknotguy said, prior to this I thought I was invincible and having to come to terms with my mortality and accept the fact that I was not going to see my 31st birthday, has probably been the hardest life lesson I've ever had to learn.

However, with that realization has come a certain clarity I have never had before.  I now know I need to worry about my health first and foremost.  I have to make decisions that are good for me, and not necessarily for friends or family.  I have always been a people pleaser so this has been a huge adjustment not only for myself but for the people in my life who are used to me putting them before my own well being.

I like the health journal idea so much I am actually going to go buy a notebook today.  That is exactly the type of advice and info I was hoping to find here on this forum.

I want to thank everyone again so much for taking the time to reply to me and hope I hear from people as well!

 

Thanks

Ryan 

EP vs Cardiologist

by loblolly - 2018-09-10 20:08:29

Thanks AgentX86 for clearing up the difference between these two specialties. After an unexpected installation of my pacemaker 7 days ago for an electrical problem I didn't know I had, I've been trying to sort out which specialist does what. "Cardiologists are the plumbers of the heart.  EPs are the electricians." clears it up. 

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