Pacemaker decision appointment

I was you

by Tracey_E - 2023-02-03 09:11:59

I agree 100% with your primary. Many of us find out after we are paced that we weren't quite as asymptomatic as we think. We wake up after with a lot more energy.

And when we pass out, it's too late. I will never ever understand that being a reason to wait!! Ok, you wrecked your car or fell down the stairs! Time to pace!! (shake my head) We've had members do that, they end up recovering from a car accident at the same time as pacer surgery. 

Third degree block does not go away, it does not get better, it always advances. Sometimes it's a steady decline, sometimes it's stable for years and then tanks. That's what happened to me. My hr was 22 when I was admitted for emergency surgery. Not the easy way to do it, in case you were wondering lol.  I got my first one in 1994 at age 27 and at that time there weren't many people paced for a lifetime so they didn't know the risks and I was encouraged to wait. Now, that's not the way most doctors think. The risks of living with untreated block far outweigh the risks of being paced. Even if you feel good, the heart being out of sync is doing damage to your body. 

Do you need to do it right away? Nope. You can plan for when it's convenient and do your research first, be comfortable with the decision. Could you wait until you pass out or lose quality of life? Sure, but why would you want to when there's a relatively easy fix that can prevent that happening.

In hindsight, I should have had mine 2 years before I got it. I spent 2 years exhausted and dizzy when I didn't have to. Really, I should have had it a few years before that in my late teens when I first struggled to do what I wanted to do. I could have been active all those years instead of sitting on the sidelines. 

I've been paced 28 years (29 in May). I'm on my 5th device. I feel great. There's nothing I want to do that I cannot. Don't be afraid of it. 

Tracey

by crystalarch07 - 2023-02-03 09:33:24

Dear tracey,

Your very positive and reassuring speech really encourages me. I also believe that I will feel better and more energetic after having a pacemaker surgery. I am overweight and I smoke. I am not without training, I play football, I run. I don't get tired so soon, I think this will change after the surgery. And yes, I never want to pass out and put myself and my loved ones at risk. I would have thought if I knew there was no chance of fainting, but the doctor says I can't say you won't. I don't know what's going to happen to me after I faint and it might be too late to say I wish I had pacemaker surgery afterwards..

Time to quit 🚬

by Lavender - 2023-02-03 10:28:09

A friend who is a funeral director/embalmer once posted this set of emojis regarding smoking:

🚬🕳️⚰️

It says a lot! I smoked as a teenager until I was 28. It was hard to quit but I prayed it away. I kept busy with my hands. I recall handbrushing the carpet on my stairs after dinner one night. I did anything and everything keeping active til this desire passed. We didn't have smoking cessation aids back then. Get a doctor to help you quit so your heart gets a nice chance to be healthy before your pacemaker is placed. 

As I have said before to you, I fainted anywhere and everywhere for six months. My heart was pausing for longer and longer periods. The last pause was 33 seconds and nearly claimed my life. 

It is good to be proactive in your own choices. 
 

It is crazy to wait till you faint

by IAN MC - 2023-02-03 10:42:58

After  a couple of years of near-fainting because of bradycardia , I did eventually faint ONCE.

It was at the end of a 10 mile running event. Fortunately a fellow-runner caught me before I hit the ground. I had a pacemaker fitted 2 days later, which is one of the best decisions I have ever made.

That was 12 years ago .....12 blissful years without bradycardia !

I still think of the possible outcome if I had  fainted whilst driving home after that race .

Ian

Your Own Decision

by Penguin - 2023-02-03 11:00:38

Hi Crystal Arch, 

Thanks for coming back to us to let us know your decision.  

Yes, it's scary but clearly you've thought it through and are comfortable that your decision is the right one for you. You've also conquered a significant level of fear and that's not easy, so give yourself a big pat on the back for that. Well done. 

Sooo, next thing is your meeting on 6th Feb.  Is this with your primary care doctor so that he can refer you on to an EP (Electrophsyiologist / Pacing Consultant) or does it work differently where you live?  

Once that meeting is over, you can begin to think about the pacemaker that he selects for you and make sure that you're happy with that choice too. Any questions please come back to us again for some support. There's tons of information on here with comments from patients about the PMs that each of them have and you might find that useful. 

You must feel relieved - if a little apprehensive. 

Thank you

by crystalarch07 - 2023-02-03 11:32:57

Thanks everyone.

Dear @Lavender, actually I hadn't smoked in the last 6 months but having my head full of it all the time made me start over. After this process, I am sure that I can easily leave.

 Dear @IAN MC, that's what I'm most afraid of. If I faint and hurt my loved ones or innocent people instead of hurting myself, nothing can fix my psychology and then my life will really be ruined.

Dear @Penguin, I'm so glad you remember me. Here is how things work, cardiology specialists and professors become your doctor. I have taken advice from several cardiologists and I really trust my own doctor. If you accept the pacemaker he suggested, he's performing the surgery.But I've never met an electrophysiologist. I don't know exactly what happened in my own country. I feel more comfortable psychologically because I made the decision. I will continue to share this process with you, you really make me feel good. I am grateful to everyone.

Pleasure to help you

by Penguin - 2023-02-03 12:58:23

I'm glad you felt supported CrystalArch.  

I was about 10 years older than you when my heart slowed down. I felt way too young, totally unprepared and frankly terrified and disbelieving that I wouldn't just somehow 'mend'.  Nobody understood why it had happened to me - including my doctors. I had lots of conflicting emotions and conflicting medical opinions and because nothing was 'certain' I fought the decision the whole way. 

I can only imagine how hard it must be for someone of your age.

Psychologically I had to get to the point that a pacemaker was the only decision left and to know, as best I could, that there was not going to be any improvement before I could accept it. Fear and denial of what was happening to me was a huge part of that.  

So yes I understand why it's important that you make the decision without pressure and on your own terms. You have to live with it and accept it and move on with your life afterwards. That's easier for some people than others.  

I'm happy to support you as much or as little as you need. Just ask. 

Take care 

Dwelch

by crystalarch07 - 2023-02-10 02:52:41

Dear @dwelch,

Thank you so much for talking about your ideas and life experiences in such detail. 

I had a meeting with the doctor on Monday, so I went there. But as a country, we are in a very difficult situation. There was a huge earthquake, the city I live in is safe, but 10 cities were destroyed. Some were almost completely destroyed. I have friends and people I know who have been under the building that has been destroyed for 5 days. I have completely forgotten about my own illness. Such emotional pain is really heavy and unbearable. 

In the short meeting with my doctor, we discussed that my heart is not a structural problem and that I can continue with regular check-ups since I do not experience any symptoms and fainting in congenital block. He explained that it was my decision, that one day I would totally need it, but that my heart was able to maintain its own functions now. I can't really concentrate on the battery issue about the situation I'm in. I'm postponing this until my next check up is in May.

Kind regards.