wait or go ahead with PM?

Hey, I'm new here. Good to "meet" all of you.

I'm in a situation where my cardiologist has said he's pretty sure I'll need a pacemaker eventually, but has left it up to me whether to do it now or wait. I have frequent but intermittent episodes of 2nd degree type 2 AV heart block (Mobitz). In the past I had 2nd degree type 1 (Wenckebach), so it's getting worse. Cause unknown. No other heart issues have been diagnosed. He assumes I'll eventually inch toward complete block. Symptoms are mainly fatigue, head rushes, and occasional palps. Not sure how much of that is due to the heart block.

My initial decision was to wait. Why put something in my chest if it's not absolutely clear I need it right now. Maybe I'll never need it! But now I'm wondering if I should go ahead. Thinking: why wait until I have really bad symptoms? What if I start having fainting spells? What if I'm driving my son around (or swimming, or crossing the street) when that starts? What if I go into complete heart block and they have to do this as emergency surgery? Better to not have to rush?

Was anyone else in this sort of a situation? Did you decide to wait, or go ahead, and why? Looking back, was it the right decision?

Thanks a bunch!

7 Comments

Snap!

by NettieA - 2013-02-10 03:02:43

Firstly welcome!

My story is very much the same as yours. My cardiologist left it to me to decide - I have the same... frequent but intermittent episodes of 2nd degree type 2 AV heart block (Mobitz).

He also didn't know whether I would ever get to the stage that I definitely needed the pacemaker, but he had already stopped me from diving and rock climbing, in case the episode blocked enough to cause me to faint. So my thought too, as yours, what if I'm driving with my kids, crossing the road, walking down the stairs etc.

For me, I decided that I didn't want to be a statistic of, "if only we'd known we could have done something about it". So I did, and had it fitted May 2012.

Luckily, my cardiologist found a diving safe pacemaker, so now I can dive. In fact I'm back to rock climbing too.

It was scary for me as apart from having a c-section, had never been in surgery. I also had a general as it was fitted under my breast. Recovery felt slow at the time, but I'm glad for the peace of mind that I'm being looked after!!

Obviously this is how I felt about the situation and everyone is different.

Good luck with your decision :-)

I know how you feel

by rnasee - 2013-02-10 09:02:22

Hi !

I hope I'm not late on this! I was in the same situation a year ago. Only difference is Iv had a complete heart block since I was BORN! I lived for 20 years getting advised from two different cardiologists about getting a pacemaker. They also said that I would eventually need one and left it upto how well I felt. When i was young my parents made all the decisions for me and they saw that I was able to do everything. When I grew older I decided to wait as well.

But I did start feeling tired. And one day during holter monitering, my heart started beating really fast. My doctor called me to come into the ER and I left a week later with a PM. Now that I have it (even though I really didnt "decide" to get it, I do have peace of mind.

Im not sure how 2nd degree heart block feels, but im sure its better than a complete. Im here to tell you that even a complete isnt the end of the world. Iv had it all my life and got a pm last year when I was 20. Take care and email me with any questions!

better energy?

by acordeon - 2013-02-11 04:02:55

Thanks for much, everyone, for your feedback. This helps a lot.

One thing I'm curious about: for those of you who had AV block, especially those of you who had it intermittently like @HattieM: did you feel much better on the PM, once you recovered from the surgery? More energy, etc?

Like I said, I have a lot of chronic fatigue, but I'm not sure if it's due to the heart block. Since monitoring has shown that the block is intermittent, and I seemed to feel tired at times even when my heart was beating normally, I'm not sure if getting a PM would help my fatigue all that much.

Basically: does a PM tend to help fatigue in people have a high pacing %, or can it help even for those with lower percentage?

If I thought it would help the fatigue I would be a lot more willing to go ahead sooner rather than later. My doctor isn't sure how much it'll help.

fatigue

by Tracey_E - 2013-02-11 05:02:00

I have 3rd degree block so I pace 100% of the time and my energy level before/after was night and day, hr went from 30's to 70's, so that's more than double the oxygen. I'm probably an extreme example but my eyesight got sharper, my mind got clearer, little health problems went away. I was literally bouncing in the bed when I woke up, kept driving the nurses crazy because I was pacing the halls and they didn't want me out of bed yet. Oh, what I would give for that much energy now! lol

There are never any guarantees, we all react differently. However, every time your hr needs to go up with activity but doesn't, every time your rate drops too low when you are sleeping, every time your heart is out of sync... your organs are being robbed of oxygen and it's hard on your body. I believe has a cumulative effect and wears us down.

good thinking

by Tracey_E - 2013-02-11 10:02:03

I have congenital av block so for me also it was always a matter of when, not if. I chose to wait as long as possible, partially because I was afraid, partially because I had a dr who didn’t want to do a pm in a young patient so he didn’t push me. In hindsight, this was dumb and I regret it, and I’m more than a little resentful that the dr was so laid back about it. I almost died and ended up in emergency surgery. I freaked out my family, put myself in danger, wasn’t able to take the time to choose my surgeon or plan anything. I went downhill gradually enough that I didn’t realize how bad it was until I felt better. The day I ended up in the hospital, my hr had dropped to 22. I was so out of it, I thought the whole thing was vaguely amusing and I drove myself to the hospital, it was like being drunk. By that time, I’d spent two years more or less sleeping my life away when I could have been feeling good.

You are correct that waiting until you pass out is too late. We don’t have a crystal ball to tell us when it will happen. I would say that when it affects your life, when you are too tired to do what you want to do, when you find yourself cutting back on activity because you don’t feel up to it, when you regularly get dizzy, just get it done. Now that I’ve had one for almost 20 years, I realize it doesn’t matter if I’ve had it 20 or 18 or 25. What does matter is that I feel great.

Up to you

by kdb - 2013-02-13 02:02:03

Hi there,
I was hospitalized with complete block a year ago, and told I would also need a pacemaker eventually (all of the dr.s said right away, but in the end the head honcho said since I was able to do everything I wanted to right now, I could wait). I am 23, so they were reluctant to put one in immediately.

A few months later, I somehow dropped down to 1st degree block, with periods of 2nd and likely 3rd. So now I am probably good to wait much longer to get a PM.

I think it really depends how you feel, if you start noticing differences, etc. I personally can't feel when I go into/out of block. When it starts truly affecting your day to day life is when I think it's best to go ahead. As others have said it's a very minor procedure and you will be back to 100%. But at the same time, the earlier you get it, the more surgeries you will have in your lifetime. So it is a fine balance. I think you will do what's best for you, don't worry too much about it!

Diving safe!!

by NettieA - 2013-02-17 11:02:27

Hi ANGRYSPARROW - sorry I've only just seen your post as I've not been back on the site. :-)

My comment was actually that my dr found a Diving Safe (rather than driving). The units they usually use here in Malta (EU) were depth rated to 10m (Medtronic). So to continue diving would of been very restrictive. My dr researched one that was rated to 60m (St Jude) - not that I'll be going quite that deep!!!

@ acordeon - I will reply to your private message with some more details.

Wishing everyone a Happy Weekend :-)
Nettie

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I am just thankful that I am alive and that even though I have this pacemaker it is not the end of the world.