Newbie from UK

Morning all

I'd like to introduce myself as a new member of this 'exclusive club'.

I live in the UK and am an otherwise fit and healthy 52 year old. Late 2022 I was diagnosed with aortic stenosis caused by a congenital bicuspid valve. I had no symptoms other than being slightly out of breath on physical exertion which I put down to gettting older!

I underwent open heart surgery in January 2023 to replace the aortic valve and to repair a section of the aorta. Sadly after surgery my heart did not recover the electrical pathway that runs from the SA node to the ventricles so 8 days after the first surgery I had a Meditronic Azure dual chamber pacemaker fitted. I had a bout of AF for a few days after the surgery (not uncommon) which the pacemaker dealt with and the hospital knew about due to the wireless link from pacemaker to bedside box to hospital, clever stuff! I am coming off the anticoagulants as the AF has cleared up.

Mentally I was fully prepared for the valve change but the need for a pacemaker totally blindsided me. I have to say that being fully reliant on this little device is scary and feels so unnatural so it is good to read so many positive and knowledgeable posts on this website. Your posts remind me that the pacemaker does not need to limit my life but that I do need to be vigilant to my condition.

My recovery is progressing well, and I am surprised to say that the discomfort from the pacemaker site felt worse than having had my sternum cut open and a 20cm wound! It felt like the pacemaker was a little too close to my shoulder but overtime the discomfort has reduced and I am hopeful that in a few more months I will hardly know it is there.

My heart rate is 10-20 BPM more than before surgery and quickly increases on exertion. It's slow to return to rest after exertion. I am assuming this is normal post OHS surgery and will improve with time. I am due to start cardiac rehab which may help with this.

The one thing that is getting me down the most is that I can feel my heartbeat so strongly through my body when either seated in an armchair or lying on my back in bed. It's hard to forget what I have been through with a constant reminder every second! This could be a side effect from OHS as the epicardium is not closed after surgery meaning less sound deadening around the heart. I am wondering though if it may be that the pacemaker pulse voltage is a little high causing a stronger contraction of the ventricles than is required. I have my first appointment at the device clinic in a week so will ask them about this as well as adjusting the limits (60 & 130 BPM now).

So that is about it from me for now.

Thanks to all the contributors to this website and best wishes to all.

John.


7 Comments

You’ve been through a lot!

by Lavender - 2023-03-12 10:00:11

John, you're a real trooper! My gosh you're recovering from a lot and you sound so well informed and knowledgeable! Of course you're surprised with a pacemaker-many of us are! 

My friend is four weeks into open heart surgery recovery. He's had not much pain. I'm thinking that the location of the pacemaker with all the arm and shoulder movements leads to more pain. Be sure to keep moving your arm but not above the head. I know you have to restrict above head movement due to open heart surgery anyway. You will adapt!

My heart felt like it was racing and caffeinated after my pacemaker was inserted. I just wasn't used to my heart beating so effectively. After one month, they did a check of the pacemaker and dialed it back from 70 to 60 bpm. Mine is at 60-130 now. I see you are already set at that. I also see you will soon have your first pacemaker check so you can report in and get any necessary adjustments to your settings. 
 

Another friend of mine had valve repair and after a few months-got a pacemaker. He was initially very weak but after cardiac rehab-says he feels better than ever. His spirits have been lifted too. 
 

I am in awe of how much the medical folks can do to keep our hearts beating. A few decades ago-you might've been a goner. Here you are-though-with a battery powered heart buying you more years to enjoy life.  Quite amazing!  You will grow to trust your device and forget it in time.  I'm two years into having a CRT-P which I initially resented. It's not my top most thought anymore. 

May God bless and speed your recovery!

Welcome John

by Gemita - 2023-03-12 10:51:57

John, you do seem to have come a long way already with your pacemaker and working out for yourself what might be causing your strong, noticeable heartbeat.  I am impressed.  Yes I have learnt from members here that the lead voltage(s) are usually set higher at first until the leads are well embedded into heart tissue and our hearts get used to pacing.  They need to check that the heart will be stimulated effectively at the start of our journey with a pacemaker before lowering the voltage.  

The only potential problem is that the higher voltage initially may cause noticeable discomfort like you are experiencing, perhaps also some muscle twitching until they turn the power down.  I got some stimulation in the diaphragm area at first.  Both hubby and I have pacemakers, implanted same year in 2018.  We also live in the UK John (Kent).  

Yes the pacemaker needs a bit of getting used to and the implant procedure itself for some of us is certainly not pain free and the discomfort may last well in excess of the usual expected healing time of up to 6 weeks.  My implant initially was extremely uncomfortable with sharp nerve like pain occurring around my device.  I also experienced worsening arrhythmias for about 3 months.  Now coming up to 5 years I can honestly say my pacemaker is helping me to live a better quality of life, with fewer troublesome symptoms.  I am able to do most activities I previously enjoyed prior to my illness (tachycardia/bradycardia syndrome - part of the Sick Sinus Syndrome) thanks to my little device.  I am sure it will be the same for you too John if you can be patient for a little while longer while healing takes place and you slowly build your strength.

I send my best wishes and hope cardiac rehab goes well for you. 

Gemita's comment

by docklock - 2023-03-12 14:36:00

I DON'T MEAN TO HIJACK THIS POST BUT ....

"the lead voltage(s) are usually set higher at first until the leads are well embedded into heart tissue and our hearts get used to pacing." 

When the Medtronic tech tuned my PM a couple of weeks ago, he said he was programing my PM to reduce the voltage (at that time 21 days). Now I know why. Didn't know PM could be programed for the future (unless I mis-understood him).

Like I said I didn't mean to butt in, but Gemita's comment seemed pertinent to this original post. 

 

docklock

by Gemita - 2023-03-12 18:35:11

Docklock, you haven’t hijacked this post.  All comments are valuable and relevant.  Not sure I understand your comments though on what you were told about "programming for the future".  Would assume the Medtronic technician changed your voltage settings either at the time he last saw you or left a message on your file for the adjustment to be made on a specific date in the future?  Do you have an early date to return for any changes?  If not, he no doubt changed your voltage settings when you were last seen.

The voltage needs to be higher until the heart muscle heals and inflammation around the leads tips goes down and scar tissue forms.  The higher voltage is needed initially for adequate capture to trigger a contraction. They eventually turned down my voltage at around 8 weeks I recall. 

I would ask what was changed when you were last in clinic and keep a record of the changes if they are happy to tell you.  That is the only way we are going to learn about our settings and what each setting does.

Heart cushion

by Biotronik2 - 2023-03-13 10:30:13

John I had the exact same surgery last May for my heart. Ended up get a pacer about 3 days later. It is a lot to go through and I was in the hospital on my birthday. Happy birthday to me yaayyyy. I had no pain at all with the surgery which was very surprising for me and the staff. I did say some stuff while waking up that I don't remember though. Something about marketing a lint free dryer. That would be amazing wouldn't it.

Along with blood thinners they put me on metoprolol because when they repaired my heart it was beating to fast. I also feel my heart beating agaisnt my ribs when I breath. Mostly when I breath deeply. My cardiologist told me that when they do open heart they cut away what is basically a cushion for your heart. So yes when you are feeling your heart beat it's because your cushion is no longer there. Over time you do get adjusted to feelng it beating but it will take time. Sometimes when I lay on my side it's more pronounced that when I'm sitting. Unfortunately I only sleep on my side due to back issues but I am slowly getting used to it. 

Same here! Another Brit ...

by LondonAndy - 2023-03-13 12:41:40

Welcome John, and I had a similar journey in 2014: replacement Aortic valve due to stenosis (though I went with mechanical as I was a comparatively young 48 years old at the time, to avoid multiple re-do operations), and ended up with a bonus pacemaker too, a week after the "main event".

I didn't have any issues with the pacemaker - in fact it was several months before I thought to myself what do I need to know about this thing. However, I do remember noticing the strong heart beat, which caused some minor difficulty iin going to sleep. Have you had your first device check-up yet? When they are first inserted it is usually to a set of standard settings, and more advanced features are not yet turned on. You should mention your concern to your technician, though what Gemita and Docklock said makes sense. 

Incidentally, you may not be as dependent on it as you think: I am also described as "100% paced", but when I had a replacement pacemaker last October (at Barts, London) when they disconnected the old device my body maintained a (low) level of pacing, which made the operation simpler for them. So even in the incredibly unlikely situation of a complete device failure you would most likely be OK, just not have much energy to walk or anything I suspect!

Feel free to message me if you have any other questions, but I am sure you will soon forget about the device and carry on with life as before.

First device clinic

by John_W - 2023-03-23 07:51:19

Thanks to all for your feedback and welcoming to this group.

Yesterday I had my first 'device clinic' appointment, 3 months after the device implanation. I had what looked like an oversized computer mouse held over my left shoulder whilst three people looked at computer screens whilst interrograting the device and running a self test.

No major new news emerged. I am 100% paced (I knew that), momentarily they stopped the pacing and saw one natural beat come through but I did not want them to check anymore as my memories of this from the immediate days after aortic valve replacement are that it is not a nice sensaiton and whatever they find does not change things much for me. Maybe I'll let them check more at my next appointment in six months.

During the appointment my heart rate was upto 110 bpm which they commented was high. I'd seen it gradually increase in the afternoon as I got closer to the appointment so I am putting this down to 'white coat syndrome'. Now back home it is anywhere between 60 and 80 bpm when I am at rest.

They dropped the pacing voltage to 2.5 volts (from 3 volts) and explained that once the device has completed self-learning it may drop lower automatically. Saftey margin is times two. This small voltage reduction has had not noticeable effect on the the thumping heart beat I have so they also chekced the lead positions and seemed happy that they were ok. Maybe I just have to get used to the thumping sensation.

Lower limit dropped from 60 bpm to 50 bpm. Upper limit stays at 130 bpm, I'll put this more to the test over the next few weeks as I increase my exercies levels.

Battery life is more than 10 years, happy with this! So for now that is about it. Trying to ignore the thumping beat and other strange noises from my chest and trying to concentrate on the fact that oxygenated blood seems to be pumping around my body reasonably well and trust the medical people looking after me.

You know you're wired when...

Your life has spark.

Member Quotes

My pacemaker is the best thing that every happened to me, had I not got it I would not be here today.