ALMOST 6 WEEKS

Hello All

Sorry haven't posted sooner. Life busy and Afib gone ...but 3 kids still here. Number 1 graduated high school last week but littlest guy is only 9. They all still need driving and cooking and help. However...with no a fib all is good.
So as you know my first 3 weeks were worse then expected for an in shape 47 year old with paroxysmal less than 1 year. The swallowing your own saliva pain for several days was scary and a bummer. Overall pain did not fully go away til about week 3 near sternum. So doc had me do sonogram and barium swallow when i hit week 2. May have been ulcer but all seems better now. Pain in chest is almost gone as well by week 5. It now feels bad only some times toward end of day when i have done a lot (too much). I am up to 3 miles walking per day at a pretty good clip. Will take it up to 4 miles this weekend. Usually getting it in every other day.

PROS
So far no a fib but still think about it if i feel a hard PVC or PACs here and there
Eating pretty much anything i want but mostly eating healthy as always.
Have had some ice cream wasn't eating calcium anything foods before so that was fun
At week 4 one month had first glass of wine no problem...had stayed away since last July.
Ran into Dr Natale at NYC restaurant he had recommended back in Austin.... We were out celebrating 1 month on June 14th ....Weird
Keeping wine etc to 2 glasses 2 times per week as Natale. Not sure i am even at that rate yet.
Can take really hot shower every night before bed and not go into a fib that is fantastic.
Can run up stairs with cup of tea on weekend morning bounce into bed with book or paper and not go into a fib also a positive thing for quality of life.
Heading to middle childs 3 day away lacrosse tournament. Will bring meds but not fear.

CONS
Tired still by 3pm most days even when i don't do a ton.
Cant really sit in sun now it bothers me. Maybe this is a PRO
Don't really feel like i could go for a run or spin class just yet.
Heart rate on some days jumps up to 100 just walking around
HR overall up now is 68-74 range for RHR was 49-54. This make sleeping not as good i believe.
Sleep has been not as straight thru the night
Still sometimes have heavy pressure in chest. Worse when laying down.
My Heart Beat is overall stronger, louder and more noticeable to me overall even now with no a fib (before i never felt unless in a fib, don't like hearing it and feeling it)
The inter op pics Natale sent of my heart look like a trumpet gun hit my heart with about 300 burns none in neat rows and just random burns all over the place so not sure
what type of ablation that is called and waiting to speak to the good doc about it this week.

Overall so far glad i did it. I was able to not worry about getting our daughter ready for prom or graduation without going into a fib. Definitely so far a gift.
Best to all
xo
Susan
PS jackie i oould not find the Post op protocol
but i am on as follows

WILL BE OFF AT 3 MONTHS
12.5 Metroporl 2x per day
Eliquis 5mg 2 x er day
Cochicine .5 mg 2 x per day

ON FOR THE LONG HAUL
mag glycintate 200mg 2 x per day
Khlor Con-potassium 10 meq 1/2 in am 1 tab in pm
Taurine 500 mg 1 x per day
D3 4000mg 2 x per day
Trace minerals 1x per day

Susan,
All sounds normal, just part of the healing process. My heart took a full 11 months to actually quiet down almost totally!
So you ran in Natale in a NYC restaurant here in the city.......and what was the good doctor doing here again.....

McHale

Susan - Good to see you posting. I am so pleased that you are progressing nicely, post-ablation.

My protocols in The Strategy came about as a result of AF breakthrough in years 4, 5 and 6 because apparently it's easy for me to become depleted in the essential electrolytes and several other core nutrients needed for heart electrical conduction stability. I offered them as suggestions for others who began to experience AF breakthroughs. When the revised Strategy is eventually published, it will include maintaining an alkaline tissue pH, which I neglected to mention originally, along with continued use of the Nattokinase enzyme to help ensure healthy blood viscosity and flow and several other constants.

Since you mention the K-chlor as part of your ongoing supplementation support, please be aware that form of potassium (chloride) is known to cause stomach irritation/gastric distress ...so considering your esophageal sensitivities, you may want to consider changing your form of potassium to citrate, bicarbonate or gluconate.

Enjoy your new life in blessed NSR!

Best to you,
Jackie



The Strategy
[www.afibbers.org]

Hi Susan,

Good to hear things are going well for you these days, even with a house full of kids to tend too.

The moderately elevated HR is totally normal after a solid ablation and will resolve over time.

Regarding your impression of the CARTO 3 imagine I suppose you asked Curry to send to you, you have to keep in mind that CARTO 3 mapping software is limited to making only discrete dots (typically red or blue) a format which was chosen since most EPs did at the time of CARTO software creation, and many still do, apply ablation only in discrete 'dot by dot' patterns,.

Modern advanced EPs, such as Dr Natale in particular, mostly used a gliding dragging technique with the ablation catheter touching the side of the Lasso mapping catheter with the ablation tip held at an angle so that he drags both catheters together across a region of interest to create a more smooth and contiguous line rather than the 'dot by dot' method often used with a more vertical ablation tip relationship to the atrial tissue. That vertical tip alignment can predispose toward perforation in thinner area as well as often leads to excess swelling around the perimeter of each discrete dot that can create tiny gaps between each dot that can in some cases lead to reconnections.

Since CARTO cannot represent true lines like this and when Dr Natale is making multiple lines and at times meandering around a specific area to reduce trigger amplitude signals, its impossible for CARTO to show those smooth lines accurately and instead it paints what look like a lot of random dots in the specific area that the ablation lines are laid down in. Of course there are some discrete ablation dots laid down too here and there to address any CAFE focal triggers found, but the majority of what looks like a bunch of red random dots on CARTO is a rather imprecise representation of smoother lines laid down and it can be very misleading if you assume each dot is a discrete burn.

These are NOT all actual discrete ablation dots by any means. There is no way he did something like 300 ablation lesions as you may have assumed from looking at that image without understanding what it represents. Only when you recognize that these dots are part of patterns of lines can you start to see those lines start to jump out some, but don't get the mistaken idea that what he did was some random chaotic 'trumpet gun shot' or you might get the wrong idea very easily.

I realize its easy to make such an assumption, but when you watch him ablate in person and see the dots appearing in the general areas on the CARTO screen where he is actually drawing fluid lines, you can see that your best bet for understanding what he really did in your pretty standard PVAI ablation for paroxysmal AFIB is more accurately represented by the diagram you mentioned that he drew for you during your first meeting with him before your ablation when you asked him to show you his procedure he planned for you.

Anyway, its likely that not many of the nurses are aware of that distinction too about CARTO dots unless they work in the ASAP Lab itself durng ablations, as from my knowledge, they do not typically send out CARTO 3 images to patients unless specifically asked and if and when they do, it should be with some explanation of what it all implies to avoid mistaken impressions,

Hope that clarifies those dots for you, but you were not shot with a trumpet gun approach I can assure you.

Keep up with the great recovery and celebrate lots of great NSR!

Cheers!
Shannon



Edited 1 time(s). Last edit at 06/26/2014 02:41PM by Shannon.

Hi Susan;
So glad to hear you are doing better.

Since we had our Natale ablation the same morning, I too celebrated the 6 week mark yesterday. I feel 110% and just heard today that my Linq report was excellent. I will be able to get off Multaq in a couple weeks ( 60 days total). I love not taking meds, but do appreciate them when I need them. I will remain on Eliquis and Cardizem, Lasix and Khlor-con potassium but not sure for how long. The doc here is still fine tuning my Armour thyroid meds.

I've had no problems save a few ectopics and "one short event in the last 3 weeks" which I was not even aware of. My heart rate is in the high 80's and used to be in the 60's prior to the afib onset, but no one seems to be worried about that so I'm not either. I walk 1-2 miles per day and stay active morning til night when I crash and sleep all night - it's just wonderful after a year of interrupted or sleepless nights.

I'm still off caffeine, gluten, limited sugar and haven't had any alcohol for almost 6 months. I 'm ready to ease back on those soon - esp. that last one.

In permanent afib for almost a year, I could not walk to the gate at the airport to get to Austin and needed a wheelchair - that was just 8 1/2 weeks ago and then a week later walked through the airport and have been going strong ever since. I know this must be hard for many with even paroxysmal afib to relate to and I admit that logically this quick reversal often doesn't compute with me. My husband and the friends and neighbors watching most closely cannot believe the difference. I guess to be a miracle this would have all have to be due to some unexplained spiritual power - we know our good health is due to the power of Dr Natale, but it still "spiritual" to me! God bless Dr Natale and all the St. Davids staff - they have such a gift to be able give to so many. NSR is so very under rated.

Susan, I hope we both remain in the "born again" camp for a very long time!

Best,
R . Annie K
.

Hi Annie,

Many thanks for the great update report you are doing A+ considering how far you've come in such a short time! Beats the heck out of an AV node ablation doesn't it?

One small but could be important price of advice aid share with you is to not be too quick adding back the alcohol even though its possible you might be one of those who do were not that a sensitive to alcohol as a trigger prior to your ablation, and its true some can get away with modest imbibing at some point after their index ablation. And no doubt there is even more leeway typically once all triggers are thoroughed zapped and buttoned down for the long haul whether that is from a solid 'one and done' first procedure or after an expert touch up needed to truly stabilize the heart and restore much of its long ago resilience.

But in a case like yours when the odds are already high of needing a touch up at some point, and after such a dire struggle with your permanent AFIB, I think its wise and more prudent to postpone adding back alcohol, above all else, and your heart has a prolonged chance to heal up and start to positively reverse remodel both electrically and structure for a decent period of time before adding back too regular consumption of wine and spirits. I realize it can sound draconian to be advised to abstain mucho get when you are feeling so well.

However, I'm much more interested in you staying in such fine form and minimizing your chance at any set backs or breakthroughs.

Dr Natale will, on occasion, tell people they can have some alcohol in moderation if he sense in their pledging questions that this is a very important milestone to them in their sense of recovery from AFIB, but to stop if you have any breakthroughs at all which would indicate you are sensitive to alcohol as so many of us truly are.

With a case like your though Annie, I would just err on the side of caution for at least six months, if not longer. You can try a glass atfter four months here or there but please tread lightly during your first year post ablation.

While Dr N will give an okay to try it to those to whom it is clear this means a great deal. Privately he would rather more challenging case abstain as long as they possibly can without feeling too deprived, especially after a first procedure.

Just give it some thought and if you still want to add some back in within the first six months or so just do so lightly until you get a real sense if you can handle it without the downside of more instability again.

Okay, that's the end of my school master alert. I'm just glad to hear its all going so good and wish you every advantage in sustaining this good fortune Annie.

Cheers!
Shannon

Susan - it sounds a lot like my journey. My adrenals took a hit through it all. My cortisol levels were tested and were at the bottom of the chart. 3 pm is a really hard time of day to get through with no cortisol. If you have not done so, perhaps an adrenal test would be in order.
Ron

Ron: What is the adrenal test?

Duke

Ron
I am doing the 24 hour urine adrenal test as soon as i am off Metroporol as doc said it blocks normal adrenaline output. Is that the test you are recommending?
My adrenaline i think before surgery was too high.
Best
susan