I'm not convinced I needed this pacemaker

Excuse the legth of this post. But it is a story that began in February with the implantation of a St. Jude pacemaker based on a misdiagnosis of Sick Sinus Syndrome (SSS). I want to know if anyone can help me sort through the things I know and don't know.

In Early February of 2018, I went to the emergency room with a bouncing heart reat -- not racing and not bradycardia. The rate just bounced around. I am a 57-year-old active male. The erratic beats came on a Sunday evening after a bicycle ride earlier in the day. I was working around the house. When I arrived at the ER they treated it like it was a heart attack, though the docs said it wasn't. But my troponin level had a very tiny spike, and when that is the case, they treat it like a heart attack. I was admitted for observation, though no immediate treatment was taken. Troponin went down, but I still had erratic heart rate. After four days, my cardiologist said I had Sick Sinus Syndrome. And he perscribed a pacemaker.

While at the hospital and before the implant, the hospitalist came by to ask about my history. He focused immediately on an event three weeks prior. I was on my bicyle and I crashed and lost consiousness. I woke up immediately with a bleeding head and a broken bicycle frame. I assumed my vintage bicycle frame had snapped and I hit the ground head first and that is what cause my unconsiousness. But he said he believed instead that I had a cardiac  event that caused me to drop to the ground, thereby snapping my bicycle frame. He was right, I'm 99 percent sure. Here's why.

After my implant they sent me home with the pacemaker and a new perscription for metoprolol (50 milligrams daily). After about six weeks of recovery, I started on my bicycle again. Still feeling queezy and as though I could faint at anytime, I took it easy. And it happened.  I dropped to the ground again unconsioius. But this time the PM captured the data -- I had experienced sudden death or Ventricular Tachycardia. The upside was that I had the PM to capture the information. The downside, PMs don't protect against VT.

After the near death, I was scheduled for an ICD, a heart study and a possible ablation (depending upon what they found with the heart study). While I awaited my proceedure three weeks away, I wore an ICD vest. But also while waiting I began studying anything that a layperson could about what could have triggered the VT. I was, afterall, very healthy and active. What kept coming into view was magnesium (Mg). By now It had three months worth of  blood tests to look over since begining this cardiac event. What jumped out was that my serum Mg levels. The day I first entered the hospital, my Mg level was at near threshold. And by my second VT, almost three months later, the levels were even lower. And when serum Mg is low that means the heart is even lower. Mg, potassium and calcium are the three critical elements for heart rhythm and funciton. If you are depleted of them, sudden death can happen. But often before that come erratic heartbeats or afib. I immediately began my own Mg supplementation 1,100 milligrams a  day (males require 450 milligrams daily).

An amazing thing happened. After three weeks of supplementation, much of what I had attributed to metoprolol and the pacemaker had gone away -- nausea, dizziness, lethargy. Most important my heart rate had evened out.  It hadn't all gone, but I woke up everyday feeling a little bit better.

The day arrived and I went to get my ICD. When I came out of surgery, the EP told me that they ablated something near the AV node but didn't want to get closer to the node for fear they could create an AV block. He confirmed I DIDN"T have SSS. But I now had and ICD. AND A PACEMAKER! I asked why I have a pacemaker if it was put in under a misdiagnosis.  "You will have to talk to your cardiologist" he said. Wait --- What!

This is where my suspicions begin.

Days and weeks went by and though my heart rate had really leveled out -- I attribute that to the supplementation and perhaps a successful ablation. But I was still feeling I could faint at any time. I called the EP and asked if I should stay on metoprolol given my condition and the fact that metoprolol drives pulse rates/blood pressures down (that's why pacemakers are there, to keep it from going too far down). Again, his office said "You will have to talk to your cardiologist."

So I called the cardiologist's office and he said,stop metoprolol. "Should I phase it out," I asked. No, he said. just stop it. I did and the 90 percent of the symptoms melted away. After three days, I was feeling awesome. The replenished electrolytes brought me as for as they could with a foreign element insidem, metoprolol. I finally felt like I was getting back to normal. But I still had the pacemaker.

Anyone reading this knows what comes with a pacemaker. Of course there are lifesaving things that make them very important. But move fast, and your heart doesn't follow. Steady movement isn't detected by the PM so exercise like cycling is a constant stuggle.

This past Monday I had an appointment with my original cardiologist, the one who misdiagnosed SSS. I pressed him on the need for this PM. Earlier his office said, without hesitation, that I needed it becaue I have "heart block." First time I had heard that diagnosis. I call my EP, who works in a differenct city and asked if he saw that I had heart block. His PA carefully went through my file and said I didn't, according to my records.

DO I NEED THIS PACEMAKER?!

I have an appointment now with a new EP who will look at this with clear and unbiased mind. And my condition is as good as it has been since all this began. I can't help but feel that my cardiologist and EP are avoiding questions. When  I raise the spectre of this whole event being the result of a magnesium depletion (which leads to the potassium and calcium imbalance) they won't listen. One last bit that raised suspicion with me. During my last inerrogation of my device, the technician said that I looked really good for someone with a 38 percent injection fraction (half of that of a healty person). WHAT!, I said. The pacemaker doesn't record the injection fraction. That informatin has to be entered by someone.

The upside is that I feel REALLY good now, except for the pacemaker's affects. I will live with a PM if I have to. But please prove to me that I need one. Right?

 

11 Comments

I can't know

by AgentX86 - 2018-09-26 22:00:23

I have no way of knowing whether you need a pacemaker but this story is really weird. Why is your EP telling you to see ask your cardiologist about things that are clearly in his domain?  I'd fire him immediately and hire someone who had some clue what he was doing.  Get the best.  You may need it.

A couple of points Keith

by IAN MC - 2018-09-27 05:56:01

i)  You have had a PM interrogation . What did it tell you about your need for a PM  ?  Is it pacing you or not, if it is, how often ?   If it is not pacing you at all then it would mean that your heart is generating all of your heart-beats on its own.

If it is pacing you then there will be good reason for that i.e. your HR going too low for some reason.

ii )   You seem to have a misunderstanding about the " adverse effects" of having a pacemaker.   If your heartrate does not  adequately increase when you cycle this is NOT being caused by the pacemaker.   It is caused by an underlying condition  known as " chronotropic incompetence ".   What your PM does is to attempt to compensate for this condition with various types of sensor which detect activity and then trigger off heart-beats.   Some PMs are better than others at treating chronotropic incompetence but don't blame the PM , it is not the CAUSE of the problem !!

Hope you resolve your concerns

Ian

need

by Tracey_E - 2018-09-27 09:52:41

Mg is good for us, we should all take it. But if you had VT, do you want to trust your life to it? Better to have the ICD.

All ICD's are pacemakers also. If they deliver a shock, they pace the heart right after to get it going again. You may or may not pace the rest of the time, but it's part of the ICD. 

Pacers are notoriously not helpful when cycling if your rate doesn't go up adequately on your own. Most of them depend on detecting movement, which doesn't happen when cycling. 

really?

by ROBO Pop - 2018-09-27 18:21:33

Much of this story is difficult to follow and I suspect in spite of your reading about this topic, you are confused. Clearly you don't understand what's going on in spite of your studies at Google U, and need to step carefully with doctors as I just don't believe you understand what they are telling you. For example as Tracey already pointed out defibrillators have a pacemaker built in.

and by the way most hospitalists are general practitioners and don't have the degree of knowledge in electrophysiology necessary to make a proper diagnosis. Been there done that and wouldn't give 5 cents for a Hospitalist diagnostic skills.  

I'm not convinced I needed this pacemaker

by Keithwhelpley - 2018-09-27 20:02:14


Thank you for all you comments. I hope there are more.

The problem is not that I don't know what my doctors are saying. I know exactly what the doctors are saying. It's that what they are saying isn't adding up. And the fact that it took Google U to enlighten me about my low electrolytes and not any number of doctors tells me: Thank God for Google.

The fact is I have a pacemaker that doesn't have a diagnosed purpose. It did at one time, but that turned out to be a misdiagnosis with no replacement diagnosis and the elimination of a drug (metoprolol) that was part of the reason for having a PM in the first place. Now all I need a doctor to do is tell my why I have this thing. I understand that once you experience a VT, it is  important to have an ICD in case it happens again. One theory is that once your heart finds a errant pathway, it could use it again, electrolytes be damned. I'm good with that. But it's the PM.

Doctors all along the way have failed to explain like im a 4-year-old, why I need this thing. And with each evaporating reason for having one, I am e left to find answers online or calling the manufacturer. 

I don't think doctors know how pacemakers works. They follow the theory, but unless they have one in their chest, they don't have a clue. I was in an argument with my cardiologist who insisted that a pacemaker only works when you need it. That's not true. The pacemaker keeps your heart at the resting rate until is senses you need a higher rate. That comes mostly through motion. Then the PM lets go, and your pulse increases. If you ride a bicycle or are a smooth walker, the pacemaker keeps your rate low. That leads to the faint feeling. No doctor can tell me that's not true because I (we) live it. There are adjustments, but I don't want to go there until they show me I need It. I am set at 60 bpm (too high for my resting rate) and a high of 140 (maybe too low for my activity level).

And don't get me started on the metalic clicking on my left side. My cardiologist says it's in my head. That's when I realized he was truely unqualified to speak to anyone about pacemakers.

I will contine to research. I have an appointment with a new EP in a city far away from where my procedure was done. I'm expecting to have this PM for the rest of my life, but not if they can't give me a good reason for having it. The ICD is something that I am resolved to having for the rest of my life. I will keep you posted. Love this club. Have learned much. With pacemakers, the most qualified people to listen to are the ones who actually have one.

Hi Keith

by NiceNiecey - 2018-09-27 22:52:32

Love this thread and have learned from the comments.

Keith, let me summarize a couple comments above and reiterate a few things.

1. Putting it as bluntly as my own cardiologist did, VT is “not compatible with life.”

2.  You cannot have an ICD without a PM so it’s a moot point wanting to find a reason to have the PM portion removed.

3.  Ian’s comment about your interrogation is absolutely the right question: are you pacing at all?  If yes, you need the PM.

4.  Because you are new to this arena, I think you have a misunderstanding of how the PM works as you described it in your second comment above.

5.  Medicine is an art.  Doctors try different things hoping for a good result.  Whether there was a misdiagnosis of why you need your device is immaterial.  That must be very frustrating for you but given that you’ve had VT twice, you should take all doctors comments into consideration before throwing them all overboard.

Keith, when I read your posts I get the feeling that you are proud of your healthy lifestyle and level of physical activity.  I sense that you feel you are in too good of shape to be dependent on a PM at age 58.  Been there; felt that way too!  And I was younger than you.  Having a PM is not indicative of an unhealthy lifestyle.  You’ve done everything right!  It’s just an electrical problem that needs a great electrician.

A final thought.  You’ve already had an aortic valve replacement.  Let’s face it: you’ve got some “little heart issues” as I like to refer to my problems! Ask for your diagnosis again, whether you paced at all during the last period they checked, and give yourself time to adjust both physically and mentally to the changes that have recently taken place in your body.  It took me 14 months to feel really well; no idea why it was so long but it finally happened and I’m grateful.

Keep us posted!

Niecey

Not convinced

by Keithwhelpley - 2018-09-28 00:09:31

I will keep all posted. But I think all are missing the most relevant point — every reason I was given a pacemaker for does not exist. And a pacemaker doesn’t solve VT. ICDs solve VT. Most ICDs now have a pacemaker component but surely not everyone who requires an ICD also needs a pacemaker. 

I was spoiled when I received an artificial aortic valve because of a birth defect. There was no guesswork. The Surgeon knew exactly what to do and did it. He could give me everything I needed to know about my valve and how it would work and what I should expect. 

I realize electrical problems are not as cut and dried. Many times devices are prescribed on educated guesses based on hard data. And I accepted the prescription the first time. but then the educated guess was wrong. It’s fair to ask why it changed and what  is the new educated guess. My heart has not been tried on its own since the ablation and since my electrolytes normalized. I want to know what it is doing, now. 

Im an investigative reporter. Have always asked too many questions. My family just tells me to shut up. But I will get to the bottom of this, with or without a pacemaker. ;) 

hmmmmm

by dwelch - 2018-09-28 00:25:00

"The pacemaker keeps your heart at the resting rate until is senses you need a higher rate. That comes mostly through motion"

I dont agree with that, YOU keep yourself at the resting rate, the pacemaker only kicks in as needed.  If your resting rate is below the lower limit then the pacer will keep you at the lower limit not your resting rate.  If you are driving your heart properly then the pacemaker (portion of the ICD) does not have to kick in iet lets you do it.

Hey, Las Cruces. NM, I was born there.  My last NM doc was Dr Blake in ABQ, very happy with her.  Had another ABQ doc, he moved while I was living there.  My El Paso doc retired from practice and went into teaching AFAIK, is very likely retired at this point (he would be somewhere between my dads age and your dads age for reference) .  (I dont live in NM anymore so dont have a current doc there). I know ABQ is a trek and sadly that part of the country is not packed with docs and they are hard to get appointments with, etc, etc...

We only get your side of the story, but from your side of the story it sounds like you are not going to get the answers you want from this crew.  If they messed up they are likely not going to confess any more than they have already or others have contradicted thus far.  You may want to consider getting a second or third opinion.  And a laywer.  It is possible that you dont need this, but you need to have someone in the business prove this, neither the folks at this site, nor yourself are likely going to pull this off.

If you stay between limits and dont need to be paced it should not be pacing you.  Which the checkups will show.  This might mean the ICD will last longer than normal.  I know they can pull the device and cap the leads, these days removing leads is not as huge of a deal as it used to be.  Maybe they can cap the leads in a way that you can use them later if/when needed and just pull the device.  But you are going to need the right team legal and medical to do that and are probably going to burn some bridges along the way.  The insurance company that got stuck with the bill may or may not help if they are too closely tied to the doc, then when they look at the bottom line might be cheaper to side with the doc, if the doc is in a private practice then they might want that money back.

Before going in with guns blazing.  I would start with an independent practice get an interrogation and an echo if you can pull that off, get them to say/show that you are or are not staying in limits, being paced, maybe they can lower/change your limits for a while.  They can confirm/deny the low EF from the echo. 

Even if you need a device and you simply dont trust your docs, find another doc.  You need to find a doc (or set of them depending) you trust then trust the docs you have chosen.  Id have the same advice if you needed the device but didnt communicate well with the docs or trust them for other reasons. 

Good luck.

I'll ask one more time

by IAN MC - 2018-09-28 13:00:59

Forget your diagnosis, forget the wonders of magnesium .....

Did your PM interrogation show that you need a PM or not ? 

You claim to be an " investigative reporter" so you must have asked the question.

Ian

Let me add to the fun....

by BOBTHOM - 2018-09-28 20:14:57

First let me say that I agree 100% about the Magnesium, vitamin D can also cause issues, and as you noted so can other electrolites.  We all need to have those tested regularly and supplement as needed!

But as to how your ICD/Pacemaker work,  you have an ICD, it's there to prevent sudden death primarily from tachycardia (VT).  You can NOT remove the pacemaker function from the device!  All ICD's now have pacing capabilities built in!  My understanding is that you can NOT even turn that "feature" off.  Only the ICD feature can be turned off.  That is just the way it is.  You need to accept that fact first.

Next is the way it works, others here have already told you, but I think you need to research further, the ICD (or pacemaker function of it) does NOT keep your heart at a steady rythm and then correct your hearts normal pattern, it's the other way around.  Your heart beats normally and when it doesn't the ICD (or pacemaker function) steps in and gets you to at least the minimum heart rate.

Now as for the lawyers, well, not sure how well you would do as the doctors have done all the things they felt they needed to do to SAVE YOUR LIFE and give you the best currently prescribed medical therapy required for your condition!  That's actually part of why they treat us like a herd or flock.  They check the boxes and progress through the appropriate treatments that will resolve the issue in the majority of cases.  This is medically and legally acceptable.  The only thing the lawyers might be able to do (besides take your money) is get them to remove your ICD and it's built in pacing functionality.  And the cost will be your relationship with your medical team.  

And these comments are all coming from a guy who had a very difficult time accepting my condition.  I did the same, researched everything, still disagree with doctors, still monitor my test results.  Yes, I have copies of my ICD interogations so that I can review with my heart failure doctor.  And yes, I email my doctor a list of questions or issues that I would like to review at our next appointment, which he loves and hates all at the same time.  He loves that he knows in advance what I'm going to ask, but he hates having to spend so much time with meand that I question every change in therapies from meds to settings (though he would never say that).   

Now on to the meds.  All beta blockers are known to cause fatigue.  I take the minimum dose of the extened release and within 2 hours I need a nap!  But you need to figure a way, change to a different one as there are several, different dossage, splitting dossage, I take 1/2 tab 11am (followed by after lunch nap) and 1/2 tab 11pm before bed.  It is your body, your health, and yes you need to take charge, but, keep in mind these doctors deal with these conditions every day in multiple forms so don't discount their knowledge.  Learn to work with them for example my left ventricle is mostly scar tissue so when they talk about a new med increasing blood flow I need to remind him of that fact and then the subject gets immediately dropped as it would be of no help to me.  

Do your research but temper it with respect for others (including those on this site) knowledge! 

OK, I've vented, I look forward to reading more on this thread!

Ejection fraction....

by BOBTHOM - 2018-09-28 20:19:49

Oh, and on the ejection fraction,  38% is not half.  Normal is 55% to 65%.  Mine at the last catheriztion was 15%.  And if your ejection fraction is at 38% you certainly have some underlying heart issues.  Most with heart failure are at under 30% and ICD's are recommended for anyone under 35%.   You may need to take some more time to do more research to get the accurate answers, not just those that support your claims or position.

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