Pacemaker decision

Hello everyone.

 

First of all, my apologies for not being good at English.

 

I shared a few posts before to give you information about my disease and to get information. 6 months ago, I learned by chance that I have a congenital heart block and it is now 3rd degree. All tests were done, including Mri. Some doctors said that one day I would have to wear a pacemaker, some said it would be helpful if I had it installed, and some said I could wait. I've done a lot of research, read a lot of information from this group and outside. I contacted users in the country I live in. I had psychologically convinced myself to start using a pacemaker. But I have seen here that too much information is not always good. I learned that, if the pacemaker leads need to be changed for any problem, the surgery is very difficult and risky. And I also learned that using a pacemaker can lead to heart failure. I made a request for an appointment with my doctor to say that I was ready for a pacemaker and to ask questions. This last information I learned scared me again and I can't be sure of my decision. This situation was frightening to me, now this fear has increased a lot. I would be very grateful if someone could give me information.


9 Comments

pacemaker or not

by new to pace.... - 2023-01-24 10:21:34

I was told i needed a pacemaker.  After having a stress test.  Besides the slow heart beats which i had been told previouly. This time was told i had pauses.  Which  i kept saying everytime i fell, no one heard me. Since i have had the pace maker since Aug 2019, have not fallen once.

For your fear you should maybe see a therapist to help you understand your fear.

In your previous post and with the answers you have received saying with a 3rd degree you should by now have had your pacemaker.

new to pace

 

Third Degree Heart Block

by Nina38 - 2023-01-24 13:56:13

I am sorry you are going through this. Our health is very important and I can understand why the fear or hesitation has you feeling this way....

Speaking with a therapist is always helpful when a person is going through life changes...or should I say challenges...

I do hope you are able to make the best choice for yourself. We are our best advocate. :) 

I do want to share that I have had a complete heart block for 35 years.. my first pacemaker was implanted when I was 5 years old because I began to pass out and no one knew why. I was always a tired child who couldn't walk very far or play too much. Then doctors discovered I had a complete heart block.. life changed... but for the better. I had a chance to live a healthy life... since then I haven't experienced any serious complications... have changes occurred... yes but they had solutions.. 

Its okay to be scared. It's okay to do research on your own and ask questions. If having a pacemaker will improve your life and make it safer for you to carry on in life... then the decision will be easy. 
best wishes and be well

 

Decision Making

by Angry Sparrow - 2023-01-24 14:25:38

Do not panic YOU ARE STILL IN THE DECISION MAKING MODE!

Much better to continue searching for current factual information.  I suggest great care in what you read and to whom you discuss your medical condition with.  

Friends and neighbors usually are not reliable source of meaningful cardiac dialogue, however they might have a bit of useful info.

On the subject of your doctors giving you varying OPINIONS, welcome to the world of higher tech Cardiac treatment.

Most professions require knowledge up dates frequently. Once your doctor completed his/her formal education there is not manditory upgrading of their skills or keeping current with research.

If a doctor does not deal with Pacemakers and like devices on a regular basis you will not benefit from his/her knowledge in the same way. Current information quantity is staggering and changing rapidly.  Plus as a human we have our own life experiences that lead us along with current trends.

My Cardiologists have all told me something different.  From you never needed a defibrillator to Oh, you need your device replaced immediately, today.  

I will send a personal note later today.

 

 

 

Making a Decision

by Penguin - 2023-01-24 19:15:22

I did post before and just edited it. I lost the lot!

I'll keep it brief. 

You've received some really kind messages (above) and I hope they help you. I can't add anything to them as Nina, clearly has very relevant experience and probably understands how hard this is for you. 

My previous message was really about taking back a bit of control.  When you see your consultant, have questions prepared about all the things that are worrying you. It's his job to run through any risks and benefits of pacing and the device he's selected for you. The decision isn't in his hands though - it's in your hands. This is your life and your heart and nobody can make you do anything you don't want to do. 

However, not doing something which may help you, shouldn't be governed by fear of the unknown. I understand why you feel that way - it's a huge step and scary - but it gets less scary as you get further down the path and understand better what this could mean for you. 

Please try to set up a meeting with your doctor, then by all means come back with any questions as there will be things that are difficult to understand.  I'm sure you'll find supportive answers and caring responses to your questions from both your doctor and us. 

Bon Courage - You can do this - if you want to! 

Thank you

by crystalarch07 - 2023-01-25 01:57:01

Thank you to everyone who took the time to comment here. 

@Penguin it seems very kind of you to see that you cared about my post and reconsidered it.

 

I want to have the necessary conversations with my doctor and find out if it is pure luck that the pacemaker, which is inserted only for heart block, causes heart failure, even though there is no structural problem in my heart. If I am convinced what my decision is with the subject, I will inform you about my surgery date here. Thanks again for your kind comments.

You're Welcome!

by Penguin - 2023-01-25 18:00:19

It's my pleasure. I hope it helps you make an informed choice.

Come back and ask all the questions you need answers to when you're ready. 

Best Wishes 

No structural problems

by Lavender - 2023-01-25 19:20:47

I have no structural problems in my heart, but third degree heart block nearly killed me. Needing a pacemaker and not getting one can lead to heart failure. Third degree heart block doesn't heal. It's not going away.  

I had my gallbladder out and nearly died from heart block after the anesthesia.
I was told that one day I would need a pacemaker. Nobody said there was any urgency.
 

Eight months later, I started fainting. I fainted for six months. I fainted and fell on a glass table breaking it. I fainted alone in a back aisle of a store. I had a near death experience then. I fainted sitting up on my couch. I fainted driving twice-once at a red light and once luckily my bf was there. I fainted and fainted and they couldn't catch the sneaky problem I had called ventricular standstill. 
 

Finally my heart stopped for 33 seconds and I dropped on my hardwood floor just missing hitting my head on a stone hearth. I had a second near death experience. My BF pounded on me and restarted my heart. 
 

I got a pacemaker right after that. The nurses in pre op told me they were surprised that my face wasn't beaten up. They said most people fall and hurt their faces, break their noses etc when they faint needing a pacemaker. 
 

Be proactive and research but don't think it will go away. Get advice from a trusted professional. 
Don't fear pacemaker problems-that can be less than any risk of not having one. 

Lavender

by crystalarch07 - 2023-01-26 07:52:03

Dear @Lavender,

First of all, thank you for your interest and for sharing your own experiences.

I accepted that this disease will not go away. However, what I learned about the possibility of this causing heart failure after pacing surgery and the risk of lead replacement surgery if necessary left me in a state of dread. I have almost no fear about pacemaker surgery. These problems, which I might experience later, scared me. But it doesn't make sense to refuse pacemaker surgery because of these fears. I am only 30 years old and do not show any symptoms. If I were 50-60 years old, I think it would have been easier to make this decision.

So true

by Lavender - 2023-01-26 09:47:57

When I had my heart event after gallbladder surgery, and they told me I would one day need a pacemaker, I said that I thought pacemakers were only for old people and that I shouldn't need one until I am at least 80. 
 

I was so naive. I had no idea that even babies get them. Age is not a factor. 
 

I know you're at the decision making process and it's so smart of you to seek input from various sources so you can make an intelligent choice with which you will be comfortable.  Many of us had no choice when we got a pacemaker. The need presented itself.  I think it's much harder when you have to balance risks etc and decide for yourself. Hugs!

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To tell you the truth I never even give it a second thought. While growing up it never stopped me from doing anything and to this day my girlfriend or my kids need to remind me that I have one!