Protimenow Update

[Sheenas7]

Thanks, Sheenas7.

The journey isn't quite over yet -- I'm still fighting dizziness - maybe from the medications, possibly an inner ear problem, possibly a bit of each. It's probably not possible to see an ENT because of COVID-19 so we're having a 'video call' - a lot of good THAT will do me.

I'm currently wearing a seven lead holter monitor to check out my rhythm. (According to my Fitbit, my heartrate may have dropped to 37, briefly, yesterday, which means that I may need a pacemaker. Perhaps this was a Fitbit error.

I'll probably know in a few days.

Are we having fun yet?

Oh my. I have had a pacemaker since age 23.
I must say it protected me for so many years. It is a real safe feeling to have it. So don’t feel terrible if you need one. I had so many replacements over the years. I am pacemaker dependent so I have experienced a drop like that myself when the very old wire gave out. My wire was over 23 years old the last time I had to replace. It was in 2017. . So I have a wireless now and I feel very protected.
just saying if you need one, it’s an easy procedure and it totally protects you. Keep us posted. Good luck.

 

[Sheenas7]

Thanks, Sheenas7.

The journey isn't quite over yet -- I'm still fighting dizziness - maybe from the medications, possibly an inner ear problem, possibly a bit of each. It's probably not possible to see an ENT because of COVID-19 so we're having a 'video call' - a lot of good THAT will do me.

I'm currently wearing a seven lead holter monitor to check out my rhythm. (According to my Fitbit, my heartrate may have dropped to 37, briefly, yesterday, which means that I may need a pacemaker. Perhaps this was a Fitbit error.

I'll probably know in a few days.

Are we having fun yet?

Hello. Just wanted to tell you I have had a pacemaker since age 23. Many batterie changes .
After my open heart pioneer surgery in 1957 for atrium septum defect , they severed my sinus node as a by product of surgery. I was 7 years old and at 23 received my first pacemaker. I felt very protected with it. The procedure is not complicated so if you need one don’t be afraid. It really protects you in case you need it. Good luck. Maybe you don’t need it but if you do, I can tell you I have had many over the years. Best of everything.

 

[Protimenow]

Thanks. That's very reassuring.

I have a friend who told me that he 'loves it.' How do you love a pacemaker? I guess it's because you feel better when you have one - it keeps your heart rate from dropping too low. According to Mr. Fitbit, I had one episoce with my rate dropping to 37 yesterday. On April 17 and 18 last month, it registered a LOT of beats at that rage - but it could have been fooled by arrhythmia.

I realize that implanting and managing a pacemaker are no big deal. If I need one, I need one. I'll get one - wireless , with a new bell and whistle that I've thought of - but they don't have yet -- a small generator that generates enough electricity, when you move, to keep the battery always charged -- but that'll be a next generation product.

I should know within a week or less what information they get from my holter.

(When I returned the device, I dragged myself to the EP's office. I went to the window and, for some WEIRD reason, I said that I wanted to return my 'holster' monitor, and quickly realized that I didn't say holter, and quickly corrected it. I don't remember EVER calling it this -- years ago, I may have thought of it as a Halter monitor (until I learned better), but never as a holster. It must have been evidence of a lack of oxygen, or something, that enabled me to screw up that much. I wonder, though, how often they hear that word at the doctor's office.

 

[Agian]

Or, maybe it was just a slip of the tongue. Chin up.

 

[Protimenow]

Probably a slip of the tongue, as you suggest. It's probably easier to say 'holster' or 'halter' than it is to say 'holter.' The person at the doctor's office didn't react - probably heard this pronounce a dozen different ways with many words - but to me, it was, internally, embarrassing. Maybe I'm thinking too much.

 

[Agian]

Maybe I'm thinking too much.

Yup

 

[Protimenow]

I think that I may have a pacemaker in my near future. I've listened to all the Gerry and the Pacemaker albums that I can find, but they haven't been any help at all.

I was told that if my heart rate drops around 40, I'll need a pacemaker. I'm sorry they didn't detect this when I was in the hospital last week.

I had a holter monitor on Monday - according to my Fitbit, my rate went to 37 at one time during the day. I hope it shows up on the holter monitor. I took my blood pressure an hour or so ago, and it told me that my heart rate was 38. With an arrhythmia like mine, I'm told that some meters can't accurately detect heart rate. My fingers on my wrist CAN - and the rate was 38.

I'm not in a hurry to get a pacemaker. I don't want my electrophysiologist think that I'm addicted to surgery or hospitals if I mention my slow heart rate. IF this slower rate doesn't show up on the Holter, I'll have to decide what to do - the lower heart rate seems to happen somewhat randomly, so I can't just go to the office and say 'take my pulse' to show the rate drop.

FWIW - my Fitbit tracked my heart activity for more than a month. The graphs are interesting - resting heart rate had spkes and valleys - they were all over the place -- post-ablation is a straight line, with a resting rate of around 58.

I'll update this after I get results from the Holter monitor.

 

[Bryan B]

If there is anyone out there who has had an ablation, I'd like to read your experience.

I had atrial flutter in the summer of 2010. At the time my aortic root / ascending aorta was dilating at a pretty rapid clip and I had lifting restrictions that basically amounted to a no work order. I was constantly fatigued and my resting heart rate was in the 120 range all of the time so I went to see my cardiologist. He took a listen, ran an EKG and promptly asked me to drive myself the 2mi or so from their clinic to the hospital where they were going to admit me. The head of cardiology visited me shortly after I got to my room and explained the options (medication, cardioversion, ablation) and felt that ablation would be the best choice.

The next morning they came and got me, gave me a bit of happy juice and did their magic. I rolled in there with a 120 hr and rolled out with a 70 hr. I had no complications and was discharged the next morning. I did end up having OHS to replace my autograft aortic valve (I had a RP in 2004) and repair my ascending aorta about 6 months later (Feb 2011), but I haven't had any rhythm issues since they performed the ablation nearly 10 years ago.

I hope they get things sorted out for you soon Protimenow.

 

[Protimenow]

Thanks Bryan.

I'm glad to hear that your issues have been resolved. I'm a bit surprised that they surgeons didn't repair everything the first time they opened your chest.

In my case, the arrhythmias weren't just in the areas they ablated. I have some arrhythmia that is triggered below the aortic valve - and this can't be ablated. I'm hoping that the radio frequency heat will be enough to make this problem go away (sometimes ablations above the aorta work on areas below, and sometimes don't.

I'm still working through some dizziness that may have been caused by the verapamil. I've just started physical therapy, hoping that this helps with the balance. I still have arrhythmias - skipped heartbeats, etc. I will probably hear something from the electrophysiologist in the next few days, and should get a better idea where we go from here.

I'll update this when I have something to add.

Thanks to everyone for their good wishes, and for reading this thread.

(Teaser - I've done a few weeks worth of tests comparing Coag-Sense to CoaguChek XS and have some information about where the results diverge. I expect to get a blood draw in the next few days, to see what the lab says).

 

[Bryan B]

Wow after making this post on Saturday I went back and read my posts from 2010 when I had the ablation. My memory of events was foggy to say the least. I was correct in what EVENTUALLY happened but completely forgot about what happened before that. I was initially admitted in May and they were going to do a cardioversion but found a blood clot in my heart during the pre-procedure TEE and aborted. I went on Coumadin for around a month and then was readmitted. It was at that time that they decided to do the ablation instead of a cardioversion.

As for not repairing everything the first time they opened my chest in 2004, the problem (dilation) didn't exist at the time of my first surgery. I was part of that unlucky percentage of Ross Procedure patients that developed dilation of the autograft aortic root. From there that eventually affected my ascending aorta as well. I didn't have a bicuspid valve so I wasn't predisposed to developing an aneurysm but did so anyway.

 

[Protimenow]

Well, the party isn't over yet.

I've dealt with dizziness (and a bit of it may have been body dynamics, I found that after I got home from the hospital, I wasn't planting my heels on the floor before I took a step - and the focus on the front of my feet affected my balance - now, I still take turns slowly, but pay attention to standing on my heels when I'm not walking and heel-toe steps. It seems to have helped).

Before my ablation, my doctor told me that I would feel like a NEW MAN.

I certainly did -- a man who is dizzy when he gets up. A man who gets easily winded and short of breath after a small amount of exercise (if I go to the store and bring bags in, I usually have to sit for 20 or 30 minutes, panting, before I feel okay - I often take a nap afterwords). I felt worse than I did before I got my prosthetic aortic valve.

I saw my electrophysiologist yesterday and told the medical student who he works with that I didn't like this NEW MAN, then described the symptons. When they took the EKG, from about six feet away from the machine, she looked at the graph and said 'wow, you're having PVCs.' She went to her computer and started writing a lot of stuff. I told her that I had a Holter study a week earlier, and she disappeared for a while.

The doctor came in, I told him about the Holter monitor, and he also studiet it.

So - although the ablation worked to knock out some of the arrhythmias, the PVCs (I'm pretty sure of the arrhythmia's abbrebiations - maybe pre-ventricular contractions - or it refers to a plastic pipe - or maybe PVTs (pre-ventricular tachycardia - I'm not entirely sure which). In either case, these things were happening every other heartbeat.

It's no wonder that I get so tired -- I believe that I'm effectively getting about 1/2 the amount of blood circulating that I normally should.

He said that he 'would have to do an ablation.' I reminded him that he already did the ablation. He said that he would have to do a more delicate ablation - below my valve. (This is the same ablation that a month ago he said wasn't possible because if the probe went into the mechanical valve, it couldn't be removed, and that I would die on the table). Now, apparently, it has to be done.

He gave me a referrral to a doctor at UCLA. If they don't do it at UCLA (I'm not sure if they take my HMO, or would give me the procedure in exchange for my providing them witha training opportunity). At least, he said, it would be a second opinion.

He prescribed atenolol - so far, until shortly after I eat, I feel stronger and my balance is better. I still feel the arrhythmia, but maybe it's not quite as bad.

I'm not looking forward to this risky ablation. I probably need to have it.

I'm going to get my affairs in order - powers of attorney naming my wife, living trust for my wife and me, and other stuff that would leave her more secure if the procedure kills me. (Just a wild thought - although my valve is still good, and there's probably a lot of scarring to go through, what if they cracked my chest, put me on bypass, did the proecure, and if they mess up the valve, replace or repair the valve? It's more surgery, and a lot more recovery time, but if things go South, it may keep me alive).

Anyway, heres the update from this old fart who has been feeling like an ancient old fart.

 

[daVinci]

Well, the party isn't over yet.

I've dealt with dizziness (and a bit of it may have been body dynamics, I found that after I got home from the hospital, I wasn't planting my heels on the floor before I took a step - and the focus on the front of my feet affected my balance - now, I still take turns slowly, but pay attention to standing on my heels when I'm not walking and heel-toe steps. It seems to have helped).

Before my ablation, my doctor told me that I would feel like a NEW MAN.

I certainly did -- a man who is dizzy when he gets up. A man who gets easily winded and short of breath after a small amount of exercise (if I go to the store and bring bags in, I usually have to sit for 20 or 30 minutes, panting, before I feel okay - I often take a nap afterwords). I felt worse than I did before I got my prosthetic aortic valve.

I saw my electrophysiologist yesterday and told the medical student who he works with that I didn't like this NEW MAN, then described the symptons. When they took the EKG, from about six feet away from the machine, she looked at the graph and said 'wow, you're having PVCs.' She went to her computer and started writing a lot of stuff. I told her that I had a Holter study a week earlier, and she disappeared for a while.

The doctor came in, I told him about the Holter monitor, and he also studiet it.

So - although the ablation worked to knock out some of the arrhythmias, the PVCs (I'm pretty sure of the arrhythmia's abbrebiations - maybe pre-ventricular contractions - or it refers to a plastic pipe - or maybe PVTs (pre-ventricular tachycardia - I'm not entirely sure which). In either case, these things were happening every other heartbeat.

It's no wonder that I get so tired -- I believe that I'm effectively getting about 1/2 the amount of blood circulating that I normally should.

He said that he 'would have to do an ablation.' I reminded him that he already did the ablation. He said that he would have to do a more delicate ablation - below my valve. (This is the same ablation that a month ago he said wasn't possible because if the probe went into the mechanical valve, it couldn't be removed, and that I would die on the table). Now, apparently, it has to be done.

He gave me a referrral to a doctor at UCLA. If they don't do it at UCLA (I'm not sure if they take my HMO, or would give me the procedure in exchange for my providing them witha training opportunity). At least, he said, it would be a second opinion.

He prescribed atenolol - so far, until shortly after I eat, I feel stronger and my balance is better. I still feel the arrhythmia, but maybe it's not quite as bad.

I'm not looking forward to this risky ablation. I probably need to have it.

I'm going to get my affairs in order - powers of attorney naming my wife, living trust for my wife and me, and other stuff that would leave her more secure if the procedure kills me. (Just a wild thought - although my valve is still good, and there's probably a lot of scarring to go through, what if they cracked my chest, put me on bypass, did the proecure, and if they mess up the valve, replace or repair the valve? It's more surgery, and a lot more recovery time, but if things go South, it may keep me alive).

Anyway, heres the update from this old fart who has been feeling like an ancient old fart.

Good to hear you went to get re-checked. Best of luck with ablation take 2, hope brighter days are ahead and more energy is in store for you.

In this context I imagine PVCs would mean premature ventricular contractions and what you're describing sounds like you could have bigeminy. The beta blockers may help to suppress some of those PVCs you're getting. Obviously just my own opinion from what I know, not giving medical advice!

Bigeminy - Wikipedia link if you're curious

My thoughts are with you and I look forward to reading more updates soon. Take care.

 

[Seaton]

I'm not looking forward to this risky ablation. I probably need to have it.

Hoping you can get some positive solution to your predicament soon, @Protimenow . A second opinion and an effective intervention from UCLA would be good to hear.

Sending the best to you and will follow your updates.

 

[Protimenow]

DaVinci - I defnitely have bigeminy. When I was in the hospital, the nurses reported to the doctors that I had bigeminy and some trigeminy.

I can detect it just by listening to my heartbeat in a quiet room. I can feel it when I take my pulse in my wrist. The arrhythmia confounded the electric pulse meter at my electrophysiologist's office, so they took it the old fashioned, more accurate - way.

My personal meters don't seem to have that problem very often - but the arrhythmia sometimes throws their count of my pulse rate off - giving inaccurate readings.

I'm currently using an Omron 5 Series Upper Arm BP tester - I can't talk about its accuracy, but it has Bluetooth built in, and an Android app reminds me about taking my blood pressure. The meter transfers the results to the phone, and the app records it. It also detects and reports arrhythmias - it isn't an EKG, so its report goes no further than that.

The app can use improvement - but at least it DOES let me transfer the values, so I don't have to create a log and physically enter the results.

I'll see when, or if, the specialist at UCLA can see me. I would be somewhat surprised if this perhaps interesting issue would make him wait too long to see me.

 

[Protimenow]

I called the number that was given to me by my electrophysiologist. I realize that it's Memorial Day, but I thought that I could at least leave a message. What I got was an arrhythmia clinic - this clinic apparently specializes in arrhythmias.

I intend to call the clinic on Tuesday and see how it goes from there...

 

[Protimenow]

It still isn't over.

I contacted UCLA, amd am waiting for my HMO to approve the referral request (fortunately, UCLA accepts my HMO). I asked my electrophysiologist's office to fax my records to UCLA. I don't know if they got them yet. UCLA also called to request them.

My electrophysiologist's biller has tried to become aassociated with my HMO - with no success figuring out how to reach them. I got them a contact number in about 30 minutes (I called one of my doctors who takes this HMO and got a number from the office). My electrophysiologist may finally get approval to work with my HMO.

After the initial dose of Atenolol, things went downhill. My resting heart rate dropped from 58 down to today's 48. Yesterday when I was talking to the electrophysiologist office, I checked my heart rate (fingers to wrist, clock with second hand on my phone) and it was 36. No wonder I'm so tired and short of breath.

The doctor told me to hold off on the Atenolol and not to take Verapamil if my heart rate is below 60. I have a feeling that it will STAY below 60 until I hae my aortic ablation (I'm not sure that's what it's called - it's damned close to my valve, and if they put their device into the valve, they can't get it out - so it's pretty risky).

The doctor also told me that I NEED the other ablation. I don't think, at this stage, that it can be avoided.

According to Dr. Fitbit, my heart rate drops to about 45 at night, when I'm sleeping. Today I don't have the energy to go to the store. I'm unable to use a meter to take my blood pressure because the arrhythmia now confuses it.

I'm now hoping that stopping Atenolol and staying off of Verapamil until my heart rate hits 60, things will get better - balance issues will resolve, heart rate will be up, and other arrhythmias that the first ablation resolved will not return. As I understand it, Verapamil is supposed to be good for arrhythmias - it doesn't seem to work with my PVCs. I don't know how they can get much worse once Verapamil is completely out of my system--but I should know soon...

There was talk about a pacemaker, but if the lowered heart rate is a result of the medication, I may not need one. If I do, I'll request one with Bluetooth and Wi-Fi.

Thanks in advance for all your nice comments.

I'm wondering - have you gone through similar crap?

 

[epstns]

The closest I came to this sort of confusion was when my ventricular pacing lead failed. My resting heart rate dropped to my "escape rhythm" of 48 BPM.

When I called my E-P's clinic, they at first told me that I should disregard the reading on my wrist monitor. I insisted on an office visit. Once they had me in the office and read my pacemaker, their expression changed. . . a lot.

I ended up scheduling a temporary adjustment to the old pacer, then a cath, then a lead and pacemaker replacement. All of that took about a month or six weeks, though. No fun in the interim.

 

[Protimenow]

I was told two days ago to discontinue the atenolol - which dropped my heart rate, and not to take Verapamil if my heart rate was below 60. That night, I removed what I thought was atenolol from my stack of nighttime medications - but it wasn't atenolol. Resting heart rate was 48, with the rate dropping down into the high 30s - which I detected with my fingers on my wrist and the second hand on my watch. Last night, I checked again, identified the atenolol and removed it. I haven't taken Verapamil since the night before last - because my heart rate was too low. Yesterday, with the low heart rate, I didn't feel like doing much exertion at all. I'm hoping that today will be better.

So far, UCLA hasn't received my records from the electrophysiologist, and my HMO hasn't sent approval of the referral.

Maybe next week??

 

[Protimenow]

I'll do a brief update and, if anyone is interested in a longer narrative, I'll give that, too.

Briefly - my heart rate continued dropping into the 30s - measured with fingers on wrist, and no electronic device that may give bad values because of the arrhythmia. On Saturday (May 30), I had a pacemaker implanted, set for 70 BPM.

It won't cure the PVCs, but at least the blood will get to my tissues more like it's supposed to.

Now - the longer version:

Even after discontinuing the Atenolol, my heart rate stayed low. (It had been below 60 for some time, and I was told by an RN that I should go to the hospital -- I didn't).

I measured my heart rate on Friday. At some times it was in the high 30s. Again, using fingers to wrist. I called the EP's office, but didn't receive a call back that day.

On Saturday morning, I was feeling pretty strong. Effects of Verapamil and Atenolol seemed to diminish. I went to one store, then came home. In the afternoon, I didn't feel right - again. I took my heart rate again - fingers to wrist, and it was consistently in the 30s.

I called my EP's office and the doctor answered the phone. I told him about my heart rate, and he said 'let's take care of this, man.' He instructed me go to the hospital, and call him when I got there. He also told me to have the hospital call him. A few minutes after the hospital called him, an IV was inserted, many tubes of blood were taken, the line was flushed, and a green cap put on the IV.

The E.R. doctor came in, told me that the operating schedule was full for Sunday (?) and asked if we could do it right away.

Right away, REALLY meant RIGHT AWAY. They started the pre-op for me, rolled me into the area outside the operating room. I spoke to the anesthesiologist, gave him some history, and I was moved into the O.R. I was transferred to the operating table, hooked to electrodes, and was ready. They called my EP - he was scrubbing for surgery. A few minutes later, he walked into the O.R. An oxygen mask was placed on my face, I got some propholol, and about 45 minutes or so later, I was awake, and wheeled to recovery. Time between call to doctor and completion of surgery - less than three hours.

I was released about four hours later. (I said released, because I couldn't have been discharged if I wasn't admitted). This was a Saturday afternoon outpatient surgery.

I left with a prescription that I wasn't sure I could fill on Sunday (I did - I took ube to a pharmacy that was open on Sunday, then a different Uber home), and a box with a device called Merlin@home. The seal had been opened, and I assume that they already paired the Merlin@home to the pacemaker. There was no paperwork - perhaps the doctor took it with him, and will give it to me, along with instructions, when I see him on Wednesday.

FWIW - the Fitbit Charge 2 that I bought for $15 on eBay doesn't accurately detect my heart rate. I don't know if it's the arrhythmia that throws it off, or just a defect in this particular Fitbit. It's reporting a resting heart rate of 58 -- which is nonsense because my pacemaker keeps it at 70.

Also - FWIW - I don't seem to be having as much trouble testing my blood pressure with my Omron 5 - maybe the slow rhythm give it problems. I'll keep checking with it and see if the issue with the meter has been resolved.

For now, with a heart rate of 70 and above, I think that I'm doing better. I may still have an ablation in my future but, perhaps I'll be able to put up with it, now that I've got a higher heart rate and more oxygenated blood going through my body.

 

[Sheenas7]

I'll do a brief update and, if anyone is interested in a longer narrative, I'll give that, too.

Briefly - my heart rate continued dropping into the 30s - measured with fingers on wrist, and no electronic device that may give bad values because of the arrhythmia. On Saturday (May 30), I had a pacemaker implanted, set for 70 BPM.

It won't cure the PVCs, but at least the blood will get to my tissues more like it's supposed to.

Now - the longer version:

Even after discontinuing the Atenolol, my heart rate stayed low. (It had been below 60 for some time, and I was told by an RN that I should go to the hospital -- I didn't).

I measured my heart rate on Friday. At some times it was in the high 30s. Again, using fingers to wrist. I called the EP's office, but didn't receive a call back that day.

On Saturday morning, I was feeling pretty strong. Effects of Verapamil and Atenolol seemed to diminish. I went to one store, then came home. In the afternoon, I didn't feel right - again. I took my heart rate again - fingers to wrist, and it was consistently in the 30s.

I called my EP's office and the doctor answered the phone. I told him about my heart rate, and he said 'let's take care of this, man.' He instructed me go to the hospital, and call him when I got there. He also told me to have the hospital call him. A few minutes after the hospital called him, an IV was inserted, many tubes of blood were taken, the line was flushed, and a green cap put on the IV.

The E.R. doctor came in, told me that the operating schedule was full for Sunday (?) and asked if we could do it right away.

Right away, REALLY meant RIGHT AWAY. They started the pre-op for me, rolled me into the area outside the operating room. I spoke to the anesthesiologist, gave him some history, and I was moved into the O.R. I was transferred to the operating table, hooked to electrodes, and was ready. They called my EP - he was scrubbing for surgery. A few minutes later, he walked into the O.R. An oxygen mask was placed on my face, I got some propholol, and about 45 minutes or so later, I was awake, and wheeled to recovery. Time between call to doctor and completion of surgery - less than three hours.

I was released about four hours later. (I said released, because I couldn't have been discharged if I wasn't admitted). This was a Saturday afternoon outpatient surgery.

I left with a prescription that I wasn't sure I could fill on Sunday (I did - I took ube to a pharmacy that was open on Sunday, then a different Uber home), and a box with a device called Merlin@home. The seal had been opened, and I assume that they already paired the Merlin@home to the pacemaker. There was no paperwork - perhaps the doctor took it with him, and will give it to me, along with instructions, when I see him on Wednesday.

FWIW - the Fitbit Charge 2 that I bought for $15 on eBay doesn't accurately detect my heart rate. I don't know if it's the arrhythmia that throws it off, or just a defect in this particular Fitbit. It's reporting a resting heart rate of 58 -- which is nonsense because my pacemaker keeps it at 70.

Also - FWIW - I don't seem to be having as much trouble testing my blood pressure with my Omron 5 - maybe the slow rhythm give it problems. I'll keep checking with it and see if the issue with the meter has been resolved.

For now, with a heart rate of 70 and above, I think that I'm doing better. I may still have an ablation in my future but, perhaps I'll be able to put up with it, now that I've got a higher heart rate and more oxygenated blood going through my body.

Pro time now what a weekend!
So glad you have your pacemaker. Hope things go better and better now. You will have a great feeling of protection too. Best wishes. Sheena