Did you feel different after PM was turned on?

Hi Everyone,

I'm new here, although I have had complete heart block my entire life (diagnosed before I was born) and have known since I was a child that I would eventually get a pacemaker. As it turned out, that day has come a lot later than expected -I am 28 and only now am I booked in to have my pacemaker implanted in about a month's time. The reason I am now getting a pacemaker when I've gone without for so long, is that all of my doctors agree that I need to get a pacemaker before considering pregnancy, to help my heart cope with the increased stress and blood flow.

I've always been asymptomatic, or so I thought, until the last specialist I saw said that he believes that my case is rather one of adaption. He says that I will likely feel better after getting the pacemaker, but what is "better"? I've obviously never known anything different and I've never had dizziness or lightheadedness or shortness of breath or anything like that. When I questioned my doctor about this, he said it's possible that I will have more energy. I don't consider myself to be low energy - I am not super athletic or sporty, but I've always put that down to not being very fit, rather than my heart condition holding me back. I can hike, swim, etc without any problems keeping up with others. So now, even though I feel fine about the surgery itself, and understand my need for a pacemaker, I do feel anxious about how I will feel different after getting the pacemaker - I am nervous that I won't feel like myself and wont like the way I feel - will I feel keyed-up or jittery? It is just that moment when the switch the device on that I am a little worried about.

I'd love to hear how other people with asymptomatic heart block felt after getting their pacemakers - did you feel different? Just the same? And if you felt better what was better?

Thank you!

9 Comments

Your general question

by LuCas - 2013-08-19 01:08:41

Hello,
I am certainly not the right person to give you a complete answer, but you made a very general question: Do you feel better after the PM? My answer is YES. But I was symptomatic and I was feeling more tired than I am and I can say that a PM corrected part of my problem. I still have an A-Flutter, but, as I can see, this is not your case. I've never had a complete heart block myself and I have never known anyone with a complete heart block to be asymptomatic. As I am curious about things, I went to the internet to check that and I was right. According to the site:

http://www.med.ucla.edu/modules/wfsection/article.php?articleid=438

''asymptomatic complete heart block in adults at the age of 33 to 84 is 0.04%'' and ''90% of asymptomatic children become symptomatic around the age of 30".

So, maybe your cardiologists are basing themselves on that type of research, since you said you are 28 years old. Let's wait and see other members' opinions. My opinion is that you are going to have a PM implanted but POSSIBLY (I am not a doctor) will leave you with a very low pacing, which means that your heart will continue working normally and the PM will be there just in case you need it. According to the above research, you would be feeling something sooner or later.

Well, pacing is the amount of work that is resquested from the PM to make you live a normal life. In my case, which is completely different from yours, I am paced 98% of the time. Which makes me an almost PM-dependent person. If one day that will be your case, my answer is I FEEL BETTER than before.
I hope that I have been of any help to you.
Lucio
from Brazil

Better!!!!

by Tracey_E - 2013-08-19 02:08:25

Our stories are very similar! I was diagnosed when I was 5, also always knew one day I'd need a pm and was told no way was I to even consider a pregnancy without it. I wouldn't say I was asymptomatic though I got by just fine until my 20's. I tired easily and got dizzy occasionally. Unlike you, I procrastinated! Over about 2 years I progressively got more tired and dizzy, my hr started dipping lower than my usual 44. One day my fingernails turned blue and I ended up in the ER followed by emergency surgery because my hr was 22. Not the easy way to do it!!!! You are going about it the right way, imo, and in hindsight I wish my dr had pushed me sooner. H didn't want to do a pm on someone so young (27 at time of first implant) so we both kept saying "someday."

When I woke up after surgery, the difference was night and day, like I'd been mainlining coffee. Not a bad jittery, just full of energy. Like you, I had adapted and got by before. I had no idea how bad I was feeling and just how much I had learned to compensate before until I had a normal hr. I started walking the day I got out of the hospital just to burn energy. It took about a year for the faster hr to feel normal. It wasn't a bad feeling, just different, like what I thought was awake before was actually a little drowsy.

That was 19 years ago. I haven't really slowed down since. Things that tired me out before now are now a lot of fun. I learned to ski. I love to hike, kayak, rollerblade. I do Crossfit 5 mornings a week. I have two children, perfectly normal pregnancies and deliveries. They're teens now. My parents live at high altitude (7k ft). I used to mostly sit around and read when I visited them, the altitude really bothered me. This summer I was there and spent the week hiking in the high country (10k ft), even took the kids ziplining.

As you read the posts here you will see people who have had problems. Know that complications (major and minor both) are rare, less than 3%, so the numbers will look out of proportion reading the posts. For everyone here with a problem looking for answers, there are hundreds out there getting on with their lives. Some people have conditions that are managed rather than cured, those people are safer with the pm but may not necessarily feel better. Some people have sinus issues which are a more complicated fix with the pm because the pm has to predict what the sinus node would be doing if it worked properly.

We don't fall into any of that. Our hearts are structurally healthy. Our sinus nodes work like they should, the pm only has to complete the broken circuit by making the ventricles beat when the atria does. Very simple fix. I have had a few bumps in the road but for the most part, the pm has been nothing but a blessing for me. I feel great and wish I'd done it years before I did. Good luck to you! If you have questions about the surgery or recovery, or just want to chat, I'm always around.

two quick thoughts then I'll shut up :)
wear a button up top to the hospital. You won't want to contort to put on a bra or pullover top when you come home.

and talk to the surgeon about putting it a little lower and deeper than the usual placement right under the collarbone. Mine is buried and I love it. The scar is covered by a tank top and it never gets in the way. Seatbelts don't rub, I can hike with a heavy backpack, I don't have to be careful with the barbells at the gym. Recovery is a little longer but it's not bad, well worth it imo for long term comfort. Honestly, I forget it's there most of the time.

Thank you!

by lucyb - 2013-08-21 01:08:09

Thanks so much for these comments! It's very reassuring to hear about other's experiences.

I've never once felt like there's something 'wrong' with me or that my heart condition disadvantages me in any way - but getting a device put into my chest does raise some new worries and concerns, I guess.

Tracey, I'm very happy that you shared your story - as you said, it's very similar. I'm going to hope that my best-case outcome is like yours, with increased energy! I'm also really happy to hear that you have had two normal and healthy pregnancies and deliveries, as that's something else that I've felt concerned about. I may message you about this further down the track! :)

I will post an update about how I feel once I get the PM. Even though the procedure is a little daunting, I'm also excited that once I have it, I can embark on this next chapter of my life. Here's hoping for a speedy recovery..

Similar!

by RosyEatWorld - 2013-08-22 01:08:20

Hi!
We are kinda in the same boat girl! I'm 29 and just got a PM earlier this month. I did not have too many symptoms and actually was told last summer that my first degree heart block was fine after numerous tests. I was always paranoid about having symptoms, possibly passing out (maybe while driving!) and I had other fears that made my life pretty stressful.
I lived a very active life until recently in the last year I started having symptoms. I was rushed to the ER and my first degree heart block had progressed to complete 3rd degree heart block.
I was awake during the 2 hour surgery and I can tell you for sure that I felt an automatic difference once the PM was fired up. I felt a release of pressure and felt "normal." It was amazing! When I got to the ER by HR was at 34bpm and I had been having symptoms of severe fatigue and other common symptoms.
I can tell you that I feel better than ever. Also the stress of having an episode has been subsided. I have a ton of energy and I can not wait to start doing all my normal activities in the coming weeks, I even registered for my first 5K in November. I went to Disneyland last week and rode ALL the rides with no issues. Drinking moderate alcohol and coffee with no problems. My Dr's said everything with moderation is fine. We are young and this PM will only make our life easier! I am so excited for you, even though you do not feel symptoms, they may come quickly like mine did. It is best you get this out of the way so you don't cause any harm to your baby. Good luck!

same here

by dwelch - 2013-08-23 09:08:29


Same deal here, I was about 12 or 13 when they diagnosed the problem (complete heart block) and it was 19 when I got my first pacemaker. (Yesterday they installed pacer number 4, more than half my life with a pacemaker now).

I felt very strange after the first one. Up to that point I could feel every heart beat and to me that was normal, the heart was getting bigger dealing with the heart block and the doc was concerned about that so pacer time. After the pacer I felt empty inside it was very strange and I checked my pulse constantly to see that my heart was still going, even though I knew that if it wasnt I wouldnt be able to think and check my pulse anyway, but I kept doing it for a while, eventually I grew into it. I dont remember now 26 years later, but I assume that only took a number of weeks/months to start to trust the device and trust that this was the new normal.

The other part of it was the rate limit, in particular the lower limit. My regular pulse was in the 40's during the day at rest, and sleeping below that. I think my first pacer had a limit of 50 so that made it harder to sleep and things like that. I got used to that and another doc (I moved a number of times and have changed docs) bumped it up to 60, I didnt like that doc and switched, but had gotten used to the 60 bpm lower limit. So you may also have to get used to the new lower limit, esp when sleeping or trying to.

Being a young patient with these issues, you have a long road to haul. Several pacemakers over the course of your life. My opinion is though that "pacemakers make me (us) normal". We can do normal things and not worry about them. The annual visit, phone checks, and seat belts are all tolerable for what we get in return: peace of mind.

I dont know your situation, but I do know from experience there are good docs and not so great docs. For some reason cardiologists have a much better bedside manner than other docs. if you dont like your doc, switch, dont feel guilty about it, it is YOUR feelings not theirs that matter when it comes to YOUR health. I stuck with the doc that I had when I was a kid through the first to pacers, then I moved and found a new, great, doc, but then with the insurance game our company would change providers and I had to deal with trying to keep that doc by changing primary care physicians, then had to change to another doc and back. Then I moved again and got a bad doc, and decided I needed a change and through a friends recommendation, changed and am very happy with the docs in the practice I have now. One doc does the checkups the other surgery. If I have to have leads removed, etc, they have other docs that excel at that.

Short answer: I too have the same situation, from childhood. I am on my fourth pacemaker, and "they make us normal", give us peace of mind. Make sure you like and trust your doc, if you dont then switch docs now. You will feel some changes as your heart will run much more smoothly with the pacemaker, it will feel different but you will get used to it. Talk to the doc, learn the terminology, understand what the settings are and why, upper and lower limits, thresholds, etc.

David

seat belts?

by lucyb - 2013-08-23 11:08:37

Thanks so much for sharing all these experiences! A couple of people have mentioned seat belts - what do you mean by this? Is it uncomfortable to wear a seat-belt when you have a pacemaker?

I'm very happy with my current electro-cardiologist (I too have moved a few times, including internationally, so I've had a range of cardiologists) and he told me that if a pacemaker is "implanted correctly, then you won't see it and it won't bother you in any way".... I do trust him.... but then, I'm wondering if what he said is true, if people have mentioned things like seat belts and heavy backpacks being a problem.... what's your experience with this?

comfort

by Tracey_E - 2013-08-24 08:08:50

Some surgeons place the pm right under the collar bone, just under the skin. That is the easiest place to put it with the fastest recovery and many people are comfortable with this. Others, esp women and smaller boned thin people, find seatbelts rub and it pokes out. It depends on your build. Mine is lower than that and buried deeper. Once it settled in, it sort of disappeared. I have to poke around to feel the edges of it. It sounds like your dr is aware of this and is thinking of your long term comfort. I would just ask him exactly where he plans to put it, have him point to the spot.

Cardiologists run the gamut! The one I had growing up was this very sweet grandfatherly type, very well respected but super conservative. He would have wrapped me in bubble wrap if he could. He would probably have a cow if he knew half the stuff I do now! The one I have now, and have had for the last 15+ years, is a runner. His NP is fantastic, my age and also very active. My St Judes rep is also young and active. I love having a dr who loves to work out because he gets it when I say I am struggling at the gym. Too many drs would just tell me to cut back but his attitude is always let's find a way around this. All of the problems I've had over the years have been related to working out, never daily activities. Turns out I have two other very minor atrial problems that were masked by the heart block. Each time something new has come up, between the three of them, they have found a fix so I'm still able to do whatever I want.

Hi!

by CRose19 - 2013-10-07 10:10:32

Hi there!

I know you're almost done with this part of the journey but I wanted to respond nonetheless.

When I was 15 I was almost completely without symptoms. One day I thought my heart was racing and went to the school nurse, who realized my heart rate was actually around 30 bpm. Within a week the doctors diagnosed me with complete heart block (likely congenital) and put in a dual chamber medtronic PM.

At the time I didn't realize that they would ever wait, like they did with you. I think they put one in right away because they wanted to allow me to live my active lifestyle and not be worried about developing symptoms later. Either way, I was happy just to be out of the hospital and back to my life.

I don't think I paid a lot of attention to the rules about not moving your arms a lot because I was a dancer and into rock climbing at the time. In hindsight it's a miracle I didn't pull out a lead!

The reason I'm trolling the site now is because I just went into ERI (elective replacement mode) and my surgery is set for this Wednesday. After 8.5 years I am ready for a new battery that will take me from 23- maybe to 33- or even 35-years-old. Having a pacemaker barely affects my life. My scar is right under my collarbone and I forget it's there 99% of the time. I talk on cell phones, dance, hike, work, sleep-- everything like a "normal" person. And now that airports use those radiation things, I don't even have to try very hard to avoid metal detectors when I travel! The most annoying part of having a pacemaker is that people make robot jokes and refer to you like a car: "how much mileage do you have left?" etc. Then again, I am lucky to not have any related or unrelated health problems.

Although I didn't have any symptoms, it was strange to NOT hear and feel my heartbeat anymore- as others have mentioned above. But now that I'm in ERI and my heart is locked up at 65 bpm (not the case for all PMs, by the way) i can feel it again and it feels SO weird and uncomfortable at night. I am looking forward to my surgery this week.

I hope you continue to make your way towards your new normal. Good luck :)

It's in!

by lucyb - 2013-10-07 11:10:45

So, I got my PM fitted 5 days ago! Surgery went perfectly and I am VERY happy with my discreet incision. (I didn't get the deep implant, but my drs were very careful about making the incision discreet - rather than under the collarbone, which is quite common, the incision is further over towards my armpit and lower down - it really just looks like an extension of my armpit crease)

The first few days after surgery were much harder than I expected, but now things are definitely getting better and I'm starting to feel like myself again. I'm not going to lie - at first, my new, fast heart rate FREAKED ME OUT!! Going from a resting HR in the 40's to in the 70's is a big jump and the first night I had my PM in, I didn't sleep a wink, because I was so frightened by my fast heart rate! And of course, panicking about it only made my HR go faster, which caused me to panic more, and well... you can see the vicious cycle I got myself into.

Now though, I'm starting to get used to it. My husband bought me a little heart-rate monitor from the pharmacy and that's really eased my mind. I've been checking my HR when I do certain activities, like walking, eating, etc, so now I am getting a sense of what is the new 'normal' for me now. It's hard to tell if I feel "better" yet, because the painkillers are making me so hazy and my body still feels quite weak and slow after the surgery, but I already feel more 'alert' when I wake up in the morning, so I'm looking forward to seeing how I feel as I recover. :)

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It is just over 10 years since a dual lead device was implanted for complete heart block. It has worked perfectly and I have traveled well near two million miles internationally since then.