You are never alone

Hello wonderful Pacemaker Friends.

It's been one year since my heartbeat paused and a pacemaker was implanted. That was one year after I underwent a voluntary cardiac ablation, hoping to free myself of occasional AFib episodes.

That first surgery was followed by a cascade of issues. If I could go back I would have declined ablation. I will always wonder if that worsened my situation. As a note, I was of good weight, BP, cholesterol, exercised regularly and maintained a healthy diet of very low sodium. Why me?  Why not. Because it happened... 

But that is in my past.

Now I have a pacemaker and afib, and am scheduled for a new heart rhythm drug since the former one created a year of utter choas in my life until a second opinion saved me.

My thought for everyone who might benefit:

This all stinks. I've had my share of disappointment, fear, anxiety, depression, anger, questioning, regret. You name it. But after all that, I still have a pacemaker and occasional atrial fib. And I am alive!!!

I'm no fan of that old saying, "it is what it is" because it sounds condescending. So I won't say it. But I want to wrap my good thoughts around every single person here who worries, gets discouraged or frightened, feels lousy for one reason of another, wishes things could be different.

You have a right to your feelings, no shame. And you're in the right place. Anything anyone feels is legitimate to him or her. To you. Let the rest of us help be your ballast and your sail.

Love yourself like crazy: There's only one of you and (I am sure I can speak for everyone here on this one point) we're all so glad you have survived whatever it is you've been through or are going through, and wish you the very best journey. We are all on that path with you.

In a couple of weeks I'll be hospitalized overnight to try another anti-arrhythmia drug, which will be new to me. When I go in and don my johnny (ick, don't look) I'll be thinking of you and knowing that you'll wish me what I wish you: Courage, love, serenity, acclimation to what cannot be changed.

My heart stopped on New Year's Eve a year ago -- the fifth such event (each of which I was trying to ignore it when I'd feel faint). I was quiet that night, alone at home, not even a martini (smile) in hand when it happened and I finally called rescue. It was all nothing but terrifying.

Two days later the pacemaker was implanted.

This year I promised myself I'd be on a dance floor at midnight and I was. Wild dancing. 

Keep on keeping on and know that a whole lot of people care that you are scared, anxious, unsettled, worried, wondering, whatever. Your troubles are on our shoulders too. Love to you. 

I renamed my Pacemaker my Peacemaker. It is a fine dance partner.

 

 

 

 


9 Comments

Atrial fibrillation and resultant pacemaker

by Selwyn - 2019-02-03 09:28:26

Great to have a positive message. Keep dancing- it is good exercise! My problem with ballroom dancing is that the upper body is sometimes rather rigid and this takes a while for the heart rate to get going for the faster dances.

Atrial fibrillation ablation aims to map the extra electrical activity in the left atrium and isolate the area ( around the pulmonary veins). Sometimes the procedure is not successful - I have had two ablations. ( Three if you count the one for flutter- around the tricuspid valve ). I now do not take any anti- arrhythmic meds. I have the odd short lived ( <48 hours to date) bout of AF.  A bit improvement in quality of life.

The problem of the heart stopping going from AF to normal rhythm is not uncommon. Hence my PM being needed ( and my Mother also had the same problem) . 

Don't blame yourself for the past. In any event it cannot be changed. We make the best possible decisions at the time ( hopefully!) and thereafter you pay your money and take your chances. You can only make your best decision.  You may have developed the problem at any time, irrespective of the ablation. In theory the ablation has nothing to do with the heart stopping problem., in fact should you get rid of the AF entirely with ablation, I would expect your heart stopping problem ( asystole) to be resolved!

Thank you Selwyn

by Gumption - 2019-02-03 10:21:16

Thank you for your thoughts.

Ablation -- which I can only have once due to various reasons -- did not end the afib and created (in my case, along with medication reaction) additional problems.

Sometimes -- there are case studies -- pacemaker implantation is subsequent to cardiac ablation, though many people wind up with an entire cessation of afib. Not in my case.

Heart studies were all beautiful prior to that ablation and I could walk six miles at a brisk pace.

I am unable to have a second ablation with another medical team -- it's not advised -- so this is where I am and will be. On medication to try and remediate what is worse than before.

Thank you. I in no way don't blame myself for any of it and never have... I only wish I'd not chosen ablation for me, but did it based on good results for a couple of friends.

Second opinions from new doctors are ALWAYS an option for people who feel they are not being heard. Doing this changed so many things for the positive for me.

But my overall message was intended to say go on and live, whether it's enjoying your knitting or downhill skiing. Life will go on, but sometimes it takes time to acclimate.

Thank you Selwyn for replying. 

Hi Robin!

by Gumption - 2019-02-03 13:58:41

Great comment about diet.

For decades I've used no alcohol nor caffeine, even staying clear of beloved chocolate (with the exception of one piece here and there), and I used an entirely low sodium diet (including  breads, plus no deli-type food etc.), plus lots of good exercise, appropriate weight.

That was not enough to keep atrial fib entirely at bay -- I'd have none for two months, then a week of it -- so that's why I opted for the ablation. (I'm also on blood thinner, which means I steer clear of certain greens in excess so I keep my INR always bewteen 2 and 3.) Stress can be a demon and I meditate to try to lessen that. But it creeps up on most of us.

A sudden stop in heavy traffic can cause a rush of adrenaline that will set it off for me. It also helps enormously (and I fall down on this some days) to consume many glasses of water each day. If I let myself get somewhat dehydrated I can feel my heart starting to complain. (smile.)

I am so happy that your experience has been such a positive one. That's awesome.

 

Thanks

by Hummingbird - 2019-02-03 14:47:09

Thanks for the positive message and encouragement!

Nice, Hummingbord

by Gumption - 2019-02-04 12:32:42

Lovely reply.

Hummingbird, one last thought

by Gumption - 2019-02-04 12:43:14

Instead of the vulgar "sick sinus syndrome" term the medical community should use either "slowing sinus" -- if that's the symptom -- or shifting sinus condition. No need to saddle people with the word "sick" or "syndrome." Those are best left to the lofty medical school classes.

I was diagnosed with the same; my own theory, in only my own case, is that medication I was on at first after ablation affected my heart rate in a manner similar to SSS.

But, that's in the past, since I now have the pacemaker and it's here to stay.

Have a great day! You're not sick and you have no syndrome. You just have a shift. (smile.)

Gumption

by IAN MC - 2019-02-04 13:11:38

I agree with your comments re the terminology for Sick Sinus Syndrome . My cardiologist tells me that I have a  " lazy" sinus node , a term which I find really easy to identify with !

I find that it is an intermittent condition and to label it " bone idle " sinus node would be right some days.

Best of luck

Ian

ABLATION

by Gemita - 2019-02-04 14:03:46

Hello Gumption, thank you for your warm message and helpful words.  I am on the waiting list for my first ablation for AF and anything else they can mop up I hope (AFlutter and Atrial Tachycardia).  To be honest I am having second thoughts since my AF has decided to behave itself for the first time in several years.  Maybe it knows that it is going to get taught a lesson !!  My pacemaker was implanted last May and I started developing tachycardia at night soon after implant.  I have since increased my Bisoprolol and decreased my Flecainide and would you believe it, my arrhythmias have eased considerably, particularly since Flecainide dose reduction.  I did read that anti-arrhythmic meds can be "pro-arrhythmic".  Certainly since starting Flecainide in 2017 my arrhythmias have increased.  It seems to have triggered AFlutter.  I have the sort of AFib that is really irritating.  I can go in and out multiple times a day and may stay in it for up to several hours (max.8) but I always self convert.  Sorry this is about you, not me, but just wanted to share.  I do wish you well Gumption

Hi Ian and Germita

by Gumption - 2019-02-04 18:30:25

To Ian, I love your doctor's terminology. You made me laugh. Your doctor is a person of wisdom. Thank you for writing. (I get the "lazy" part.)

To Germita, this should be about you. Thank you for writing.

I'm obviously (consider my postings!) not a doctor and this is not a medical advice site.

But it's great your afib has calmed down. I wonder what your doctor might suggest, given that your situation seems to have changed in certain ways. I wonder what your doctor thinks about the Flecainide "link" you infer from the way your body is now responding. I wonder if he/she might see some connection between less Flecanide, more Bisoprolol and improvements?

I've experienced the same pattern of skipped beats you are. I'm never quite sure if it's actually afib or a different kind of skipped heartbeat. But that's just my story. Yours is separate.

However, I know how disconcerting and annoying it can be. That said, good fortune to you; we're all alive -- and life is waiting for us.  Maybe you'll let us all know what you finally decide.

You know you're wired when...

Your pacemaker interferes with your electronic scale.

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