Roller Coaster replaces Merry Go Round - Aortic fibrillation

[Protimenow]

I started a thread in 2020, with Merry Go Round in the title.
I meant Roller Coaster - ups and downs, sharp turns, etc.
At first, it documented my nearly three months in the hospital with rhythm issues.

I documented tests and procedures after this.

Here's a sort of update:

Late last year, my heart rate jumped to 130 and above after minimal exertion, I didn't feel right. The jump made little sense.

My electrocardiologist said that it was aortic fibrillation. He defibrillated me in the office, then said that I need a node ablation. He suggested that once the node was non-functional, my aortic fibrillation would stop -- there wouldn't be anything to cause it to return.

Fast forward to yesterday. Although I'm not really feeling it (I was even having it while he was monitoring my pacemaker's signal), I was having it while the doctor was looking at the pacemaker's real time reports.

Now what?

Wasn't the ablation supposed to stop these from happening?

The ventricle was also fibrillating, but adjustment to my pacemaker stopped it.

I wasn't defibrillated to stop the aortic fibrillation.

I take warfarin, so the risk of plaque forming in my aorta and causing a stroke is very slight, if at all.

The doctor implied that I wouldn't be able to exert myself too much.

I'll do what I can.


None of this is any fun. I didn't tell my wife about the aortic fibrillation - she has enough to worry about. One more thing that isn't resolved won't help at all.

I'm having a PET scan next month. I haven't checked out what kind of diagnostic information this will provide.

I see the doctor again in four months.

I'll be doing a bit of online research about aortic fibrillation and see if I can find anything that will help provide more info.

Have any of YOU run into the same thing? (Aortic fibrillation). If you're still alive (and, perhaps, even if you're not), I'd certainly like to see your comments.


Update (sort of) - I checked Dr. Internet, and there was one poster who said that there is no such thing as aortic fibrillation. I think my electrocardiologist defined AFIB more clearly than general 'AFIB' by pinpointing the actual location - which atrium was actually fibrillating.
This made a difference, because my doctor also made changes to my pacemaker that adjusted the signal to the ventricle that was also fibrillating along with the aorta.

 

[dornole]

So - I recently started having paroxysmal afib with ventricular tachycardia, yeah. And I had a cardioversion that stopped one episode but it kept recurring a couple times a week. Put on flecainide and metoprolol now off both of those due to feeling awful. Haven’t had any noticeable episodes for a month. But still on Eliquis maybe forever.

Your situation sounds closer to my FiL. Ablation didn’t work and he has a biventricular pacemaker. Do you have one of those or just a regular one? The biventricular one really improved his quality of life and along with a cardiomems device that measures the degree of CHF he has daily and allows diuretics to dosed accurately, he has stayed out of the hospital, driving again, can walk around the block slowly etc. It has made a dramatic difference having the biventricular pacemaker.

 

[Gail in Ca]

I’ve been in afib since 2014. I don’t have a pacemaker and my cardiologist just said I would live my life in afib after the cardio version didn’t work. I feel fatigued a lot, but is it due to afib, hemolytic anemia, severely leaking mitral valve or all of the above? Sometimes my hr goes to 110 while I’m just doing nothing but that’s rare. Mostly my hr is around the 80’s. It’s just irregular. I was listening to a concert and during the soft sections my irregular heart beat was very noticeable to me. Mech valve and irregular, fun times.

 

[Protimenow]

My pacemaker is ICD (IIRC) -- in addition to just pacing, it's sitting with the ability to defibrillate if I ever wind up needing it.

My cardiologist talked about Right Lead and Left lead, so I suspect that it IS biventricular.

My aortic fibrillation hasn't triggered this. I'm hoping that it never does.

I don't have a cardiomems device (and I'm not even sure what a cariomems device is). I'm try to do the best I can with what I still have.

It's 90 degrees outside - but I have to go to the store...fun.

 

[Protimenow]

Oh....and...
I developed two inguinal hernias (fun) from coughing too hard - possibly related to lung issues secondary to broken ribs.

I saw a surgeon who specializes in this, and other, surgeries. I told him that my ejection fraction was below 30, and he told me that putting me under a general anesthetic was too risky (I kind of thought this would be the case).

When I visited my cardiologist, he told me that my EF the last time they tested it, was 35%. WTF? I'm sure that this wasn't what he told me back then.

He told me that he would clear me for surgery.

Now I have to think about whether I really want this fixed or not, and whether it's worth whatever risk comes with it.

 

[Gail in Ca]

Before my heart surgeries, I had an inguinal hernia repaired. The general surgeon gave me some kind of nerve block and then Valium to relax me in the operating room. It was all done without me going under, unlike the second one I had at Kaiser, where they totally put me under. I liked the first procedure better. But, I’m a woman so not sure if it’s comparable to a man’s anatomy.

 

[Eva]

Sorry to hear all the above. Sending you my good wishes.

 

[Protimenow]

Latest update:

I had nuclear study (my brain froze at the name) a few months ago. My echo was even further back.

My endurance has been waning - although I haven't been pushing myself, either. Yes, I'm my own worst enemy.

My electrocardiologist suggested that I get a Barostim - a recently approved device that is supposed to help people like me with heart failure.

I'll probably get it on Saturday - small surgery is scheduled for then. Implantation is pretty simple - done by a vascular surgeon.

Once it's done - if I'm still here and able to do an update, I'll report on it.

TTFN

 

[dornole]

Thanks for the update. Wishing you well!

 

[dick0236]

I also wish you well. Makes you wonder about all the stuff the docs recommend these days. It seems that 2+2 does not always equal 4 when it comes to medical devices.

 

[Eva]

Bet wishes, @Protimenow

 

[Protimenow]

Yes. 2+2 doesn't always equal 4. The doctor has his own mini-surgical center. I'm sure he'll charge Medicare a good chunk. He'll probably charge Medicare a healthy amount for the device.

He has a vascular surgeon from UCLA doing the operation - which doesn't necessarily mean that this surgeon is any better than others who've done the procedure.

I plan to have a lot of questions for him when I see him Wednesday.

My wife is scared of this procedure - especially near Christmas. She has a lot of fears and concerns. Maybe I'll see if the doctor can call her and ease her mind a bit.

We're all we have.

 

[Chuck C]

Latest update:

I had nuclear study (my brain froze at the name) a few months ago. My echo was even further back.

My endurance has been waning - although I haven't been pushing myself, either. Yes, I'm my own worst enemy.

My electrocardiologist suggested that I get a Barostim - a recently approved device that is supposed to help people like me with heart failure.

I'll probably get it on Saturday - small surgery is scheduled for then. Implantation is pretty simple - done by a vascular surgeon.

Once it's done - if I'm still here and able to do an update, I'll report on it.

TTFN

Best of luck with your procedure Protimenow.

Please keep us posted on how things go. That would be remarkable if heart failure symptoms improve.

 

[Protimenow]

I'm set for Saturday. Got blood work, carotid CT scans with and without contrast. Met with doctor, who called the Barostim rep and sort of put my mind at ease (most questions are my wife's concerns). It sounds like a very simple outpatient procedure - 40 minutes under the knife, a bit of tranquilizer so the local anesthetics don't bother me - and I should go home about an hour after the procedure.

It may take some tweaking of the settings before I feel the full benefit. I will probably have it adjusted every 4-6 weeks - a Barostim rep will do the adjusting. It may take as much as six months of tweaking until I see the full benefits from this.

Smaller than a breadbox. Smaller than a pacemaker, the pocket for this thing shouldn't be very big.

I'll update this later.

 

[pellicle]

may take some tweaking of the settings before I feel the full benefit. I will probably have it adjusted every 4-6 weeks - a Barostim rep will do the adjusting. It may take as much as six months of tweaking until I see the full benefits from this.

Good news

 

[Protimenow]

A minor update -- I described the Barostim device as if the signal it sent to the carotid was an electric pulse.

Apparently it's a vibration - faster than the ear can detect - apparently.

I'm set for the procedure on Saturday morning. It's supposed to be very simple -- I'll report back after I have it done.

 

[Beach77]

Best wishes! @Protimenow

 

[Protimenow]

I had the Barostim implanted on Saturday morning -- I was told that it took about an hour to do - I went in at 7 and was home at around 10.

As expected, it was two parts - the one attached to the Baro node over my carotid, and the one below my clavicle.

I'm what my wife calls a 'drug virgin' - no history of any illicit drug use (okay, marijuana twice, more than 50 years ago), so I was rather sensitive to the drugs that I got during surgery. I was loopy for the next day or two.

That night was a bit of a pain - coughing every 15 or 20 minutes - getting stuff out of my lungs, I guess - clearing things out.

My wife, who looks at me more than I do, said my color has improved (from a light green to a lime green) - and I can see that my fingers have a color that I haven't seen for a long time.

This thing actually works.

I go to my cardiologist on Thursday to check on settings for this thing (and probably also look for infection around the steristrips). I expect that things will probably go better after adjustments are made (maybe they have to do this in stages or the brain will reject too big a change).

Although they say that you can't hear this thing work (and you really can't), I stumbled on a way to hear it, if you really want to -- in a quiet room, I can hear it through bone conduction - I put my hand over the device and touch my thumb or palm to my ear (or to my jawbone just below the ear). It's not a big thing, and it seems to confirm that it's a vibration that works, rather than an electrical pulse.

Thanks for all the good wishes.


I'll have more feedback later.

 

[Chuck C]

Thanks for the report Protime!

This thing actually works.

This is great news!!!

Please keep us updated. This sounds like it might be a real break through for many heart failure patients.

 

[dornole]

Thanks for the update I have really been rooting for this to work for you! Glad it went smoothly and that it looks promising!