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One Month Post Implant Update

For Momto3 and others who held my hand before I finally bit the bullet and had the pulse generator implanted here is a one month update.

First I feel better than I have in YEARS.  I am more alive and more active.  I FEEL more alive.  I went in for a one month checkup at the EP's office and the device is performing absolutely perfectly.  It senses my activity level well and increases my rate very accurately.  It also senses my getting quiet and drops back to its rest rate of 80bpm quickly.  That is good both from the standpoint of how I feel and from an energy conservation issue.  Fewer beats means longer battery life.

I found out that the device - manufactured by St. Jude Medical - also automatically sets its own excitation level.  Every 8 ours it checks my heart's excitation threshold - the level of voltage needed to make it beat - and sets its own output to a point a tiny bit higher as a safety margin.  Normally, in machines that do not have this automatic feature, I'm told they set the excitation level to 3.5 volts for the 1st 2 months after implantation then fine tune it later.  My device has sensed an excitation threshold of just over .8 volts and is triggering at 1.125 volts.  That is just a tad over ONE THIRD the level usually set.  That means my device is using less than a third as much energy to trigger my heart than might be expected.  That translates to longer battery life.  Plus it translates to less insult to the tissue so less buildup of (not sure what the medical term is for it but for want of a better term I call it ) callus around the electrode.  That is good for the long term health of my heart.

I am going to be out of work till the end of June.  Nobody wants to hire me without something from a Dr. saying I'm not going to keel over.  I guess it's a liability issue.  Anyhow I am assured that if everything is still running fine onthe 26th of June I can get a note from my EP certifying I am fit to return to duty.

Till then I am keeping busy.  I have done several repaints of virtually airplanes for a small Virtual Airline and done some other work.  I have spent a lot of time flying MS Flight Sim 2004.  I finally convinced the puppy I got the day after I found out the first ablation didn't hold that it is better to do his business outside.  I guess he got enough of having his nose rubbed in fresh urine and feces (his own) and being tossed outside.  It was close there for a while.  I was beginning to think I had adopted a "Sooner" (i.e. he'd sooner go in the house than outside) but he seems to have finally gotten the idea.

Thanks to all who answered my questions and commiserated with me.  Having the pulse generator is not optimum.  For one thing the site is still tender and wearing a driver's side seatbelt is distincly uncomfortable.  I'm told that will go away in time.  For another, it does cause a bit of body image dissonance to see that scar and the bulge where the device is implanted.  I am not a vain person but the bulge is visible when I wear a pullover shirt and I am certainly aware of the foreign object just under my skin.  It is also a bit scary to be so dependant on technology to function.

One side note.  While at the EP's office, one of the test they ran was to set the device to 40bpm to look for underlying problems with the remaining electrical system of my heart.  I could feel the change immediately.  Since I was expecting it I was not in the least bit scared.  The feeling was, in all truth, quite pleasant.  Actually it was VERY pleasant!  Kinda like an instant shot of Versed.  I got very mellow.  It was a very cool feeling.  Who needs drugs?  Wish I had a controller and could set the thing to do that at will.  I could run (ok amble) around seemingly stoned to the gills and have no problem passing a pee test.  AND it is 100% reversable - instantly.  I wish I could set the thing to let my rate drop to the AV node's default rate of 28-30bpm.  Then I could do like C3PO and "shut down" for a while.  That would be cool.  Kinda like going into temporary hibernation.  

Cheers, all.  I'll stick my head in once in a while.

Bionic Bill

11 Responses
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88793 tn?1290227177
Hi Bill,

Yes, English is not my first language, it may be a second or a third language.  So you know that how long I have to take, to write an Essay (thread) like this?  

Not all the pacemaker only paced right ventricle.  Some only pace Atrial, some bi-ventricular pacemaker will pace right and left ventricles.  Mine one has two leads, it paces right atrial and right ventricle.  Some of them only paced one chamber but have two leads (one lead turn off)also.  That's why not all the pacemaker dependents at the end will die in heart failure.

Here is the link from medhelp.  Answered by Dr MJM.
http://www.medhelp.org/posts/show/253724
Helpful - 0
Avatar universal
You asked: "Are you knowing that long term pacing the right ventricle can cause heart failure? "
I was not aware of that but in my case, what is the alternative?  Pre-pacemaker I was miserable and half-alive.  Also, I know people who have lived a decade and more with a pacemaker without suffering heart failure.  But I have a 2-month checkup coming up in 3 weeks.  I will definately bring that up with my Electrophysiologist.

I'm glad to hear that you have filed fear in the history file (I suspect English is not your first language.  For the record your syntax is unusual bur entirely understandable).  Fear is useful but we cannot let it master us.  

Keep on keeping on.

Regards,
Bill
Helpful - 0
88793 tn?1290227177
Problem is not the pacer fail.  They can detect before it out of work.  Are you knowing that long term pacing the right ventricle can cause heart failure?  

Once my lead was leaking and I end up with a complete heart block.  I didn't faint.  Just felt a massive irregular beats, SOB and chest tightness.  Lasted 2 weeks, made a lot of complaints.  Finally, the GP agreed to run an EKG.  

I am not a pacemaker dependent.  Although I have my His bundle ablated, an accessory pathway grew from the Atrial and join to the ventricle.  It conducts very well as I was told by my cardio at last visit.  The pacemaker sits there for an insurance (double protection) as my cardio told me.  I think he is lying to me....  I got the pacemaker interrogation report.  It said my ventricle paced >99%.....  

Yes,  when I  ask my cardio a few questions, he said I am anxiety.  When I cried in front of him, he said I am depressed.  I'm very confused, am I entered into the cardiologist suite or psychiatrist suite?   Unfortunately, I went to a second opinion cardio, he didn't want to take me.  He said it is complex.  

I think I'm just waking up and having a surprise!  Fear is not existing and was filed in the history.  If I can get the superman to fast backward the clock, I won't attend that hospital anymore.

Thanks for the encouragement, I appreciate it.
Helpful - 0
Avatar universal
The single lead pulse generator senses AND paces full time.  There is a wire from the implanted device that goes through the wall of a vein up near my collar bone and from there into my vena cava and thence into the right side of my heart.  It was threaded through the tricuspid valve (the valve that separates the right atrium from the right ventricle and hooked into the wall of my right ventricle.  

Yes, if the AV node is ablated then the person becomes dependent on full time pacing of their ventricles.  But if the device fails it does not ordinarily mean death.  Our bodies have (were DESIGNED, I believe) with multiple fail-safe and redundant systems.  Even after ablation the AV node will put out its own pulses.  It does it typically at 28-30bpm which is enough to sustain life.  That means I can have confidence that even if my device shuts down completely I am unlikly to die as a result.  However 30bpm is not enough to maintain consciousness for long.  I would have time to call for help.  Since I know what 40bpm feels like, I am confident I would be able to recognize the symptoms of such extreme bradycardia and call for help.

You said "If I got a choice or let me choose, I'll never allow them to ablate my AV node." Sometimes you do not have the choice or the alternative is worse.  In my experience the universe seldom gives us a chlice between good and bad.  Usually the choice is between bad and awful or between awful and "OH MY GOD!!!"  

As for your Dr. not letting you choose, why do you stay with that Dr.?  Do you have the option of going to another?  There is NO WAY ON EARTH I am going to remain under the care of a physician who does not respect me and care enough about me as an adult human being to discuss things with me.  I see you are from Oz.  IIRC, you folks down under have socialized medicine.  Do you have ANY choice of physicians or do you HAVE to go to the one to whom you are referred?  For your sake I hope you have a choice.  In any case, bug the Dr. for answers.  Jesus told the story of a widow woman who kept bugging a corrupt judge until he finally gave her justice.  Do not - I repeat DO NOT - let him/her brush you off without answering your questions.  

It sounds like you have strong feelings about this issue.  Does your Dr. know how strong your feelings are?  If so and he/she still blows you off, does he have someone to whom he reports?  Isn't there some sort of ombudsman process you can go through to file a complaint?

PikePika, you are an adult.  You are also half a world away from me.  I can do nothing for you but encourage you to stand up for yourself.  Whether or not you choose to do so is YOUR choice.  It is your heart, your health, your LIFE.  It is time for you, in the words of Lady MacBeth, to "screw your courage to the sticking place" and take charge of your health and your healthcare.  

Courage, my friend, courage.  And remember, courage is not the absence of fear.  Rather it is the refusal to allow fear to keep you from doing what must be done.  It is doing what must be done despite the consequences.  If your do not master your fear(s), it (they) will master you.  I refuse to bow down to fear.  I can be killed - as can any man - but I refuse to be cowed.  Giving in to fear is a choice we make.  I choose, I CHOOSE not to surrender to fear.  


Bionic Bill Mullins
Helpful - 0
88793 tn?1290227177
Hi Bill, thanks a lot for the reply.  

I hope someone around could answer this....  I'm still don't understand after a full AV node ablation, your one lead pacemaker just sensed and not full time pace?   How do your pulse travel to ventricle?  Normally, the doctor told me if someone has a full AV node ablation then the ventricle need to be full time paced.  A pacemaker dependant.

Sorry, I never have a cardioversion so I got no experience at all.  I also never put on blood thinner and I never have my INR measured.

If I got a choice or let me choose, I'll never allow them to ablate my AV node.   Honoursly, my doctor didn't let me choose and never discuss or go over with me.........
Helpful - 0
Avatar universal
PikaPika, My single lead is going to my right ventricle.  I had the full AV node ablation the morning after the device was implanted.  They wanted to make sure the device was operating properly before they went in and did the final - very minimal and very quick - ablation.  

Talk to your EP about what he/she thinks is best.  Remember, though he/she is the expert it is YOUR heart and health.  The EP - like any consultant - is just the "hired help" and the final responsibility and decision are yours.  

My time frame got accellerated somewhat because when I went in for a cardioversion after my 1st lengthy atrial ablation (some 4 1/2 hours worth) my PT INR was at 1.4.  That is too low for cardioversion.  If you are going to be cardioverted (except under emergency conditions) you need a PT INR above 2 to help ensure you aren't going to throw a clot.  

I also think, in retrospect, that I failed to communicate with my EP well enough.  He thought that I really did not want to go to a pacemaker and that normal sinus was the "holy grail" for me.  He was going to keep trying to get me into normal sinus while there was any hope of it.  I probably overstated my desire for normal sinus.  Had I known that atrial diameter was a good predictor of success in predicting the liklihood of ablation correcting persistent A-Fib, I would probably have just opted for the implant after I failed to remain in normal sinus after the ablation.  As it was, if my PT INR would have been above 2.0 that Friday morning, I would have had yet another cardioversion - which wold doubtlessly not have worked for long if at all - and it would have been months before I finally wound up getting the implant.  I would have been debilitated much longer.  I would have had to heal from the burns that cardioversion gives me.  And I would have still been out of work through the end of this year most likely.  But I had been persistent, continuous A-Fib since last October.  I was not getting any stronger - in fact I was growing weaker.

Do your homework.  Get as "up to speed" as you can on your condition.  If you have an atrial arrhythmia, the odds are 3 to 2 that ablation will solve the problem.  After that it is even odds whether or not a 2nd ablation will solve things.  That's not how the medicos present it.  They say that 60% of patients with atrial arrhythmias are essentially cured after a single ablation.  Then about half of the remaining 40% are corrected in a 2nd ablation.  Only about 20% do not respond to ablation and ultimately require implantaton of a pulse generator.  But 60% is the same as 3 to 2 odds.  Since half of the remainder respond to a follow-up ablation that makes the odds essentially dead even - i.e. a coin toss.  There are other factors that are useful in predicting the ultimate outcome.

If you are thinking about a pacemaker, find out which one(s) your EP would consider using.  Find out why he/she has that preference.  Read up on pacemakers.  There are good resources on the web.  By all means read up on the features of the device(s) your EP would consider implanting.  I do not know if the one I have is the only one on the market that does all it does but look around.

Remember.  It is YOUR life, YOUR health, YOUR heart.  Ultimately you are responsible for whatever decision(s) your EP makes (or you and your EP make together) because you are the one who will have to live with the consiquentes - literally.  I have defined a principle of human behavior I call "Mullins' Law".  The workplace application of it is "Nothing is impossible to the person who does not have to actually DO it."  The general principle is "Nothing hurts if it doesn't hurt me."  

I hope all goes well for you.  

Regards,
Bionic Bill Mullins
"Every day I wake up on the green side of the sod is a good one."
Helpful - 0
88793 tn?1290227177
Hi Bill, where is the lead going to? Right Atrial or Right Ventricle?

Are you having a full av node ablation?  If so, it should be paced at the right ventricle......why sense not paced?  I wish to learn a bit more so that I can tell my dr what I want.  Thanks.
Helpful - 0
Avatar universal
I have the Zephyr XL SR Model 5626 from St Jude Medical.  It is a single lead device wwith an expected lifetime of up to 10 years.  Considering I am just shy of my 57th birthday, 2 replacements/upgrades will take me to my 77th -0 or as l0ong as my Dad lived.  If I live to need a 3rd replacement I will have lived longer than my Dad, HIS Dad and Mom and all my Dad's siblings (except an aunt in her 60s now).

For those who don't know the whole story, I had had PAT (paroxysmal atrial tachycardia/fibrillation) for just over 10 years.  Last October (October of 07) I went into persistent a-fib from which not even cardioversion was effective to get me out.  I felt at best half alive and some days not even that.  We tried an ablation - 4 1/2 hours worth of ablation - that brought me out of fib for a whole 72 hours.  Finally, especially after finding out my atrial diameter made the liklihood of ablation correcting the problem vanishingly small, I decided to have a final, small ablation to burn out the AV node and had a pulse generator implanted.

I do not like being dependant on a machine to be conscious but it beats being so nearly dead.  Understand that the psychological cost of having a device like this implanted - especially if like me it is all that allows you to function - is high.  Your heart is at the very core of your self/body image.  The implant can hardly help but cause some degree of cognitive dissonance.  But at least you are alive and awake to experience the effects!

As Art Linkletter (you younglings google him) is supposed to have said "I'd rather be over the hill then under it."  I agree.  "Over the hill" is bad but under the hill is for hobbits.

Bionic Bill
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Avatar universal
What device did you have implanted, for those of us who don't know your back story?
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21064 tn?1309308733
Hi Bill!!!  What GREAT news!!  I love when people come back and visit and fill us in with updates!  Don't run too far...We'll want updates on how you're doing : )  Hard to believe it's been a month since you were "charged up".  

Isn't it GREAT to feel all that energy?  You really do forget what it's like to have a little steam in your engine.  I remember a few years back when I was feeling so sluggish...had the ablations, recovered, heart function improved and I was off and running

Terrific news on your extra battery life!  We like that in our bionic patients...lol.  How cool is that about the automatic settings??  I know my Dad's ICD takes a reading every night around 10:00.  He has a small, portable device at home and as long as he's home, the machine does the work.  If he is going to be gone for more than a few days, he just lets the doctor's office know so they don't wonder why no readings have come in. Because of the device, he doesn't have to go in for so many checkups.  The machine knows what to do and transmits the data right to the doctor.  Amazing!

Sounds like you are enjoying a little down time.  Enjoy!  You deserve the break after all the pre-implant stress.  The MS Fligh Sim is so cool!  I tried my son's and did NOT do well, but it was fun!  Quite challenging!  

The puppy probably heard you talking and figured he'd better figure out where to take care of business!!  Good move on his part!  

My Dad's bypass scar is barely noticeable and I don't think I've ever noticed the ICD pocket (except for when he first got it).  I completely forgot about it and he doesn't seem bothered by it at all.  It's kinda like a "pill in the pocket" : )

I loved your story about using the remote to change your heart rate!  Hey, if you could figure out how to do that, you could make millions!!  One nurse told my mom if they could run versed through the ventilation systems, they'd be so happy (and really, really calm).  I'm liking this remote idea more and more. A temporary "hibernation" - how cool would that be??!!  

Take care Bill and don't be a stranger.
Connie
Helpful - 0
Avatar universal
I glad that your doing well!  You are an inspiration to all. I think life is a series of adjustments, you had a big one to make. It's nice to hear you are movng ahead to the future, and enjoying the life you have.
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