Pacemaker questions

Hi everyone, I hope we are all ok !

just a few questions for the expirenced recipient :-

I had a Boston Scientific duel chamber unit fitted exactly 8 weeks ago 

I have felt - and still feel worse than before it was fitted ! I'm always tired and get breathless even when cutting the grass or going up the house stairs - nothing major - just out of breath like I've been indulging in medium exercise !

I've had my first check up and the only thing they could see was the sensitivity of the reactive response of the unit was not quite set low enough to kick in and raise heart beat ! Apparently they altered it - but I still feel the same ! I am however waiting for cardioversion as I'm suffering from Afib - how exactly does Afib affect you and would it give me the symptoms I'm suffering ?

Lastly I'm convinced my unit has moved - I'm pretty sure the whole unit was below the incision scar when fitted - now the incision scar is half way down the unit and it's sitting pretty much right up against my collar bone ! Is this normal ? Has anyone experienced anything similar ?

I know someone is bound to say " can't you just go back to your cardio dept to get it checked etc " , believe me I'd love too but it's really not that easy or simple 

regards 

Mark 


8 Comments

More info

by Prof P - 2022-05-04 12:00:21

Commonly, those of us who are paced are also taking some other medications which may also be sources of some of our reactions to being paced.  Advice might be better if you could list those, since many of us have had various reactions to those.

The PM pocket will normally stabilize.  I sometimes feel like mine is moving around (even after a year) but it isn't.  Still, you are only a few weeks out and it would be worth taking some pictures to show your Dr if you are convinced of this.

Meds

by mar892ree - 2022-05-04 12:06:04

Hi Prof P

thanks for your reply 

Meds I'm currently taking are :- 5mg Apixaban ( anti coag) , 10mg Ramapril ( blood pressure), 2mg Doxazosin ( blood pressure ) 

Mark 

Afib

by AgentX86 - 2022-05-04 12:39:25

Absolutely, AF can do this. People have different symptoms of AF. Some lucky ones have no symptoms at all.. it makes you most of us feel like crap, with SOB being the most common symptom.

Pacemaker Moving?

by Gotrhythm - 2022-05-04 13:16:23

Just out of curiousity I looked at mine in the mirror. I'm on the thin side and the complete outline of the pacemaker is visible under the skin. As near as I can tell the scar runs across the middle of the pacemaker. The top of the pacemaker lies about a fingerwidth and a half below the collarbone. 

What you might have been seeing before, thinking it was the pacemaker, was swelling. It took about 6 months for my swelling to subside completely and I truly didn't realize how much swelling there had been until it was gone.

The pacemaker is supposed to be able to move a little. It can cause a problem if it doesn't move at all. Try not to worry about it---and keep your hands off it. :-) There actually is a pacemaker problem called "Twiddler's syndrome."

I'm sorry you're not feeling better yet. f rate response wasn't kicking in when you needed for it to, for sure you were going to feel tired and winded from any exertion. I didn't feel really good until they gave me a very fast RR more suitable for a much younger person.

It can take several sessions to get all the settings dialed in just right. And yes, I know it's not as easy as "just giving them a call." But this is where you get to learn to  advocate for yourself. Always polite but calmly insisting.

Of course your situation is complicated by the afib and you're waiting for the next step with that. Don't know much about afib. Maybe somebody else can tell you more about that and how afib makes you feel. 

 

Afib

by Marybird - 2022-05-04 17:47:04

Hi Mark, and welcome to the club.

You mention that you're suffering from afib, for which you're awaiting an electroconversion. 

From what I've experienced, read and shared with other people who also have afib, your symptoms of being tired and breathless much of the time can indeed be attributed to your afib, especially if it goes on much of the time. The reason for the symptoms would likely be that when your atria are "fibrillating" or vibrating if you will instead of pumping normally, the blood flow from your heart to your lungs, brain and other organs can be compromised. The shortness of breath and tiredness would in this case be in response to the lower perfusion of blood to your organs when you are in afib. 

If this is the case with you, you'll probably notice you feel better after your cardioversion when you are ( hopefully) back in normal sinus rhythm. You might need additional adjustments on your pacemaker settings after that, but that remains to be seen and depends on how you feel. 

I'm not familiar with the side effects of ramapril and doxazosin, ( other than they are an ace inhibitor, and alpha blocker, respectively, used for blood pressure control ), but I imagine tiredness might be a side effect, especially when you first begin taking them. The side effects usually subside after you've taken the drugs for a time.

Hopefully you'll notice improvement in the way you feel after you get your afib under control. 

 

 

Atrial Fibrillation (AF)

by Gemita - 2022-05-05 06:11:37

Mark, AF can literally take my breath away, often disrupting blood flow to many parts of my body including my brain and causing brain fog.  AF can feel as though I have a washing machine spinning out of control in my chest.  It is an awful feeling, because of the irregularity of heart rhythm and irregularity of heart beat.  There is nothing “regular” about AF.  In my case this clearly adversely affects my blood pressure too, making it volatile.  Some lucky folks however are completely without symptoms, especially if they experience AF at a normal heart rate because AF can be at a slow, fast or normal heart rate.

AF is one of the most debilitating conditions I have had to deal with.  In fact I would go as far as saying that when my AF first started I felt robbed of quality of life and I struggled initially with many activities.  Following the first 3 months after pacemaker implant my AF and other arrhythmias worsened while my heart was adjusting to being paced and getting over the trauma of implant surgery.  In those early days I remember sometimes struggling for air, struggling to keep my balance because I felt so weak with my strong, irregular AF palpitations which could change in an instant, slowing then racing, flipping in and out of normal sinus rhythm in an uncontrolled fashion.  No wonder blood flow is poor as Marybird explains so well.  

When in AF I was experiencing uncomfortable chest sensations too from the quivering upper chambers which is the hallmark of AF.  I could suddenly get worsening chest pain, feel like passing out again which the pacemaker was supposed to correct.  I started wondering why on earth I had agreed to my pacemaker when it was making my life worse.  With the sudden heart rate changes, this always made my blood pressure volatile too and I am not surprised you are suffering from blood pressure increases.  Get your AF under control and your blood pressure may well improve too without further intervention.

Intervention in the form of cardioversion never really helped me to stay in normal sinus rhythm (NSR), but hopefully it will help you to get back into NSR and to stay there with the help perhaps of a rate lowering med like a Beta blocker together with an anti arrhythmic med or more invasive treatments like an ablation.  My advice though is don’t throw too much at your AF too soon after your implant.  I would give your heart at least three months to recover and for your pacemaker to settle down.  I was told by my doctors that providing my blood pressure and heart rate were well controlled and I was protected from having an AF related stroke by taking anticoagulation (because of my risk factors), I would remain safe and these measures would go a long way to treating my AF too.  

Both Ramipril and Doxazosin will help to control blood pressure although they have other uses too.  The latter, an alpha blocker may be prescribed to help relieve an over active bladder and prostate problems (my husband was on it for a brief period).  Ramipril, an ACE inhibitor, may help reduce risk of heart attacks, strokes and help to treat heart failure.  One of the leading causes of AF is high blood pressure so it is important to try to control both AF and blood pressure Mark.

I sense all you really need is a caring doctor who will listen, understand your concerns and take the time to explain the nature of your AF and what can be done to help to relieve your symptoms.  If we have confidence in our doctors it can make all the difference to our recovery.  I hope you find such a doctor

Cardioversion

by AgentX86 - 2022-05-05 13:07:43

Cardioversion is a very safe and simple procedure and it might even work. It works best on those first diagnosed with AF. Some people I know have had a dozen, or more,  DCCVs. That 1tells you  something by itself. My first DCCV worked for seven years. My second, for fifteen minutes. After that, I was on strong antiarrhythmics to prevent going back into AFL. Eventually didn't last long.

The point is that AF/AFL is a progressive disease. The the longer you're in arrhythmia, the worse it becomes. It's important to treat it as soon as possible. A DCCV is a quick and safe treatment and certainly worth a try but it's not a permanent solution. It doesn't fix anything.

Thank you

by mar892ree - 2022-05-05 16:32:13

Thanks for all your comments and feedback it's much appreciated 

im not saying my health authority aren't caring - but they really don't do / tolerate drop in visits or phone calls for advice !

As an example - today I rang my cardio dept at the local hospital- it took 7 phone calls ! Got to speak to a pacing technician- explained I'd experienced 2 really light headed episodes this morning ( at work ) and a fluttering sensation in my chest followed by a flushing feeling moving up my chest into my head - I was told it had nothing to do with my pacemaker and that I should approach my family doctor !!

This may be accurate advice - but my gripe is it didn't exactly make me feel better or secure about my experience, hence the reason for asking on here ! Seems the advice / info given on here is 100% better and more accurate than given by my hospital 

Please don't think I don't respect what the Doctor'sand nurses do - their amazing - but there's certainly no aftercare or advice available .

I can honestly say I felt like I've been on a conveyor belt - diagnosed June 21 , first  cardio MRI November 21 ,waiting for cardioversion, pacemaker fitted March 22 after heart beat fell to mid 30's - still waiting for cardioversion 

And apparently I was treated as an urgent case !!!

You know you're wired when...

Your pacemaker receives radio frequencies.

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