Persistent afib

I have been in persistent Afib since 6/14/21. I was diagnosed with afib in 2016. I have had 2 ablations, the second was in 2019. I am waiting results from a holter monitor. I know it will show my rates are not controlled. For the last several weeks I have been on 200 metoprolol daily, eliquis and 2 120 mgs diltiazem daily. Rates go from 58 to 115-120. I am in such a depressed state because of this. Your thoughts will be so appreciated. I am 73 years old, by the way.



Edited 1 time(s). Last edit at 07/27/2021 10:54PM by Carey.

So sorry Pixie. Why dont they at least cardiovert you outa this? You ve been on eliquis (how long). Or…. Why has an anti arrhythmic been tried. Flec or Propafanone?
This way you might buy some time from the misery til you make a more serious move
Tom

Ecv is not an afib cure or treatment plan or an arrhythmia drug substitute for afib if it keeps coming back. It gives you a break from afib and high tachycardia. IMHO it should be only used when in high tachycardia or long afib with undesirable symptoms before it turns permanent. You don’t want to beat my unfortunate ecv record. I’m still putting burn cream from Monday morning’s ecv.

Pixie.....unless your Cardiologist is really bad or a stubborn drug/bandaid pusher.....you are an A+ candidate to get back on the EP's table for your 3rd Ablation....if you have been reading this forum some/many members have had more Ablations then you have had before it finally clicked...also all EP's are not created equal so maybe go elsewhere next time for your 3rd....i am sure it will not take long to find a few names of EP's on this site with 1 in particular who is rec. as the best in world for you to maybe move in that direction for your next procedure if you are able to swing it logistically.

We have all had that feeling of deep depression wondering if/when it will end...most not all but the vast majority find relief eventually so keep your chin up + maybe look into another Hospital/Wizard doctor to fix you once and for all.

GL

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susan.d
. I’m still putting burn cream from Monday morning’s ecv.

hey susan- and anyone.. which cream are you using? my DERMATOLOGIST is the one that finally put me on to silver silvadene. it is prescription. And I have several pods of it here- everyone one in awhile I ask for a new one so I always have it on hand. works GREAT for stove / oven burns too. I could not believe my cardiologist crew never recommended it which is why I am mentioning.

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bettylou4488

. I’m still putting burn cream from Monday morning’s ecv.

hey susan- and anyone.. which cream are you using? my DERMATOLOGIST is the one that finally put me on to silver silvadene. it is prescription. And I have several pods of it here- everyone one in awhile I ask for a new one so I always have it on hand. works GREAT for stove / oven burns too. I could not believe my cardiologist crew never recommended it which is why I am mentioning.

The below gives me relief. I get a free wood paint stirring stick from my hardware store to reach my back pad burn area. It has round edges and fits in my purse.

ALOCANE Emergency burn gel is a water-based formula with an efficient, proprietary transfer vehicle that quickly absorbs deep into the layers of skin. ALOCANE relieves pain by the use of 4% lidocaine hydrochloride. Four percent is the maximum percentage of lidocaine hydrochloride topical anesthetic allowed by the US FDA (United States Food and Drug Administration) for use in OTC (Over-The-Counter) products. Apply ALOCANE emergency burn gel generously to the burned area.

I buy it from CVS. I also use a barrier ointment as well. I’ll take a picture of it later. I’m at the hospital now. It’s main ingredient is petroleum jelly. That heals. The hospital gave me a tube.

Quote
susan.d


. I’m still putting burn cream from Monday morning’s ecv.

hey susan- and anyone.. which cream are you using? my DERMATOLOGIST is the one that finally put me on to silver silvadene. it is prescription. And I have several pods of it here- everyone one in awhile I ask for a new one so I always have it on hand. works GREAT for stove / oven burns too. I could not believe my cardiologist crew never recommended it which is why I am mentioning.

The below gives me relief. I get a free wood paint stirring stick from my hardware store to reach my back pad burn area. It has round edges and fits in my purse.

ALOCANE Emergency burn gel is a water-based formula with an efficient, proprietary transfer vehicle that quickly absorbs deep into the layers of skin. ALOCANE relieves pain by the use of 4% lidocaine hydrochloride. Four percent is the maximum percentage of lidocaine hydrochloride topical anesthetic allowed by the US FDA (United States Food and Drug Administration) for use in OTC (Over-The-Counter) products. Apply ALOCANE emergency burn gel generously to the burned area.

I buy it from CVS. I also use a barrier ointment as well. I’ll take a picture of it later. I’m at the hospital now. It’s main ingredient is petroleum jelly. That heals. The hospital gave me a tube.

Susan ...not again...why are you at the hosp. this morning?

I would appreciate any response about traveling to see Dr Natale in Austin. I live in the midwest and have limited my covid risks during the pandemic. To think of traveling, staying in a motel and heading to Texas during the time of this delta variant adds so much anxiety at a time when I am anxious enough. Just hoping to hear of any experience/feelings others have. Even being vaccinated does not do much to calm me with this situation.

The experience i have heard is amazing having anything to do with Natale + his Staff...i contacted them from up here in Canada in 2018 + they sent me all the medical forms to fill out + i sent them all my Cardiologists stuff also...it was wonderful...i was accepted + a date was being set up but i ended being ablated up here + it is perfect so far but i feel almost left out.....funny as it sounds not going to see him + being in that amazing hosp. with the amazing food + staff ect...it almost sounds like a mini lux. vacation.

Run don't walk to get there...just go online + get their info...send out a feeler Email or call directly + enjoy the non stress ride to Natale's EP table.

They even walk you through where to stay which is very close to the hosp. ect....it's like they hold your hand the whole way...amazing.

The fact that your fully vaxxed should ease your worries although the overhyping scaremongering MSM is dropping the RARE from the cases of vaxxed ind. for good reason these days as we have seen in the last month or so....but that should not deter you.... this heart problem you have is so much bigger then a death rate of 3 out of every 1-5K people who get it ...they don't even know + it might be less then that + it's probably lower with you fully vaxxed people......along with 50-70% of the pop. who don't even get runny a nose with it...so get on with it the shorter time your in it the better for so many reasons so times a wasting....TODAY pick up the phone + call.....in as little as 1 month if your lucky to around 2 maybe a little longer if your accepted you will be on your way......then in every likelyhood your in for a great exper.



Edited 2 time(s). Last edit at 07/30/2021 06:59PM by vanlith.

My wife and I traveled to Austin last September to see Dr. Natale for my latest ablation.
Dr. Natale's team is amazing and the new center is a site to behold. The entire process was flawless as usual.

Frankly, as long as you take reasonable precautions you're probably safer flying to Austin, staying in a hotel, and being at St. David's medical center than you are staying in your home town and going out to do routine errands. I've made several long trips I couldn't really avoid by both air and car during the last 12 months, including a trip to FL at the height of the pandemic there and their insane governor refusing to limit anything.

Here are my thoughts and tips on medical travel during COVID:

• Keep in mind that once you're inside the hospital facility, you're in the safest place you're going to be during the entire trip. Hospitals have had a full year to get this down right and they have.
• We've learned that COVID isn't spread by surface contact, so don't worry about wiping everything down, wearing gloves, etc. Just practice normal hand washing and keeping your fingers away from your eyes, nose and mouth.
• Mask up the whole trip until you're alone in your hotel room. And if the maid's just been in there cleaning, go do something else for an hour to give her respiratory droplets time to fall to the floor.
• If you can afford to fly first class, do so. You'll have more space between you and other passengers, and you'll be in a slightly cordoned off area with far fewer people. You'll also be the first ones and off, so less time in the plane.
• Speaking of time in the plane, the ventilation systems on modern planes are probably safer than in your local Walmart. It's continuously passed through HEPA filters with a small percentage of fresh air continuously introduced. I guarantee you Walmart doesn't do that.
• Step up to KN95 masks. These are the same as the N95 masks used by medical personnel except they have simple ear loops instead of the tightly fitting straps that N95 masks have. They're a little more uncomfortable (because they work a LOT better), but my wife and I have been using them exclusively since 2020 and they're really no big deal.
• If you take a cab or Uber/Lyft, demand that your driver wear a mask and ask them to crack at least two windows open, the driver's and yours. If they won't, I would refuse the ride and ask for another driver.

Does any one know if there is a listing of EPS who trained under Dr Natale? If one could not travel to Austin, certainly there must be a few other electrophysiologists who are consideried good EPs. He can’t be the only.one. I am sorry if I upset anyone with this post. Besides covid, travel to Austin may not be doable for some folks.

I don't think there's a list, and you certainly didn't upset anyone. I cant imagine why you think you might have. Shannon and I and others know of many excellent EPs, many of whom trained under Natale. Where do you live and how far can you travel? You don't need to be specific, just city/region, and can you deal with a one-hour trip? Two hours? Etc.

Carey,
Thank you for responding. I live in Madison, WI. I prefer to travel by car and can deal with a several hour road trip. I prefer driving rather than flying,. A person on another blog described my case as difficult, so of course I am concerned about seeing someone who has excellent credentials. I know Dr. Natale is excellent. Why am I being so stubborn about seeing him.....the covid issue is a big deal for me and some cities are bigger hot spots than others. i would prefer to find someone closer to my home so I can feel more in control of the travel, motels, etc. I know I am rambling...my health is important to me, Hearing my case being described as difficult (by a non MD) and not going back into normal sinus rhythm, etc has taken its toll on me.I spoke to my current EP yesterday. She supported me seeing someone else, but did not think I needed to go to Texas. She gave me 3 names, but I am turning to this group because of the expertise in knowing ”who is out there!”

Both the Cleveland Clinic + Mayo Clinic in Rochester, Minn. are within easy driving distance for you...now i don't know about specific Natale trained Doctors anyway in your area but those 2 are good places to start to look into their EP creds....i am sure there are some Cracker Jack EP's at both places.

GL

GL, both of those places have a good reputation. My problem is not knowing how to find out who is the best. My current EP did not give me a name at either place, Folks at my primary care clinic are useless. Most of my info Is coming from reputable AFIB blogs. I am trying to advocate for myself, but finding out who is the best is not working for me. The facilities certainly do not tell me. I know Dr. Packer at Mayo has a good reputation, but he was not recommended for what I need based on what I was told on another blog. My comments even sound crazy..... I normally can advocate for myself and my husband. In this case, I feel useless. In addition to this I was told by Medicare they do not cover second opinions,so if the visit is coded that way, Medicare would deny it. I just want a different EP to evaluate my case. Truly, no matter how it is worded, it is a second opinion!

Thank you for your response.

One more thing to add to my last post.....calling a clinic trying to find out how many and what types of AFIB ablations a specific EP has done is not an easy task. Any types on how to do that?

Pixie...it seems like there is a very highly rated EP in your area that seems to top them all.

DR. SANJAY DESHPANDE
CARDIAC EP. MALE 62 years old
ASCENSION COLUMBIAN ST. MARY HOSP. MILW.
ASCENTION COLUMBIAN ST. MARY HOSP. OZAUKEE
4142987280

Maybe you have researched him already but he seems really top notch according to his patients.

GL

Thank you again, GL. I had not heard if him.

I just read a great article about the questions to ask an EP. I now understand that being in persistent AFlutter/AFIB makes me a difficult patient. In addition to that I understand why I need an EP who would do a left atrial appendage ablation in addition to the other areas of ablation. So, I want a Dr. Natale who practices in the Midwest!! Not too much to ask for is it??!! Darn covid!

Carey,maybe you can still come through with a few names.

Pixie....the Cleveland Clinic would be ideal for you...they are world renowned esp. for heart procedures...they have seen it all and done it all.
They talk about iso. the LAA procedure in great detail on their site + they employ an Army of heart specialists EP's ect. i see on their site if your go through it in detail.
People travel WW to see them...before i had AFIB even i knew the Cleveland Clinic was broadly speaking probably the #1 heart institute in the world + its only about a 7 hour drive for you.
I remember following Dr. Natale on Twitter before + he had contact with so many dif. doctors....i am sure he knows a few or a lot from there also.
Natale was there practicing around 2004 i think so there are connections there i am sure.
Anyway that's the place i would go hands down if Austin was not possible or i was not sure of another Fantastic EP close to me.
There is not an EP. worth his weight in Salt that would not tell you cannot go wrong going there...esp. with a difficult case.

Anyway that's my 2 cents...if that Natale protege that your looking for is not within your operating sphere....the Cleveland Clinic is an absolute no brainer.

I guess it's just a matter of swinging it with medicare but considering your a tough case it would be in their best interest to allow the procedure there in the hopes that their high expertise will fix you once + for all which is good for them also.

The guy who fixed me up in central Canada was totally down + Knol. about the LAA procedure + had done many already himself + he was only in his mid 30's + fixed me as good as Natale or anyone could have.....the procedure you are looking for is not rocket science for a decent EP....i am not trying to downplay it but if you can't get that Natale protege or travel to the Cleveland Clinic don't be to pessimistic about you chances in WISC.

All the best



Edited 1 time(s). Last edit at 07/31/2021 09:25PM by vanlith.

Quote
Pixie
Carey,maybe you can still come through with a few names.

Working on it. Need to talk to Shannon because he's the Who's Who of the EP world.

There is an article (Finding the Right Doctor for You and Your A-Fib) on another website (https://a-fib.com/finding-right-doctor-for-you-and-your-afib-treatment-goals/) that can help get you started to find a doctor.

Once you find a doctor you can compare him/her against what Dr Natale does to see how experience he/she is. It has been said by many here that the more experience the doctor has the more likely they will do a better job. You will have to decide if this is correct.

There is another website that lists the charges to Medicare by doctors for 2015. So the data is old and covers only what the doctor gets from Medicare.

I will show below the results for Dr Natale (https://graphics.wsj.com/medicare-billing/#/1841382421) and Dr Sanjay S Deshpande (https://graphics.wsj.com/medicare-billing/#/1780786665).

Note the relevant (I believe) medical codes:

CODE: 93656-F: Evaluation and insertion of catheters for recording, pacing, and treatment of abnormal heart rhythm
CODE: 93655-F: Insertion of catheters for treatment of abnormal heart rhythm
CODE: 93613-F: Insertion of catheters for 3D mapping of electrical impulses to heart muscles
CODE: 93657-F: Destruction of tissue of right or left upper heart chamber via catheter for treatment of abnormal heart rhythm (RFI - no cryo)
CODE: 93462-F: Insertion of catheter into left heart for diagnosis
CODE: 93621-F: Insertion of catheters for recording, pacing, and attempted induction of abnormal rhythm in left upper heart

The corresponding number of procedures and their rankings performed by Dr Natale for Medicare patients billed only in 2015:
CODE: 93656-F: 130 - Top 20% nationally
CODE: 93655-F: 159 - Top 20% nationally
CODE: 93613-F: 165 - Top 20% nationally
CODE: 93657-F: 101 - Top 20% nationally
CODE: 93462-F: 32 - Top 20% nationally
CODE: 93621-F: 32 - Top 20% nationally

The corresponding number of procedures and their rankings performed by Dr Sanjay S Deshpandefor Medicare patients billed only in 2015:
CODE: 93656-F: 11 - Bottom 20% nationally
CODE: 93655-F: 0
CODE: 93613-F: 36 - Top 40% nationally
CODE: 93657-F: 0
CODE: 93462-F: 0
CODE: 93621-F: 26 - Top 40% nationally

Of interest to note is what procedures Dr Sanjay S Deshpande charged the most to Medicare in 2015:

CODE: 93299-O: 288 - Top 20% nationally
Remote evaluations of implantable heart recorder system including transmissions, technician review, support, and distribution of results up to 30 days

CODE: 93295-O: 562 - Top 20% nationally
Remote evaluations of defibrillator up to 90 days with analysis, review and report

CODE: 93296-O: 1,298 - Top 20% nationally
Remote evaluations of defibrillator transmissions, technician review, support and distribution of results up to 90 days



Edited 1 time(s). Last edit at 08/01/2021 04:57PM by JakeL.

For those wanting a list of Dr. Natale's EP proteges who are very experienced in cardiac ablation in their own right ... Below is an off-the-cuff few names.

Dr. Pasquale Santangeli ... Univ. of Pennsylvania - Philadelphia
Dr. Luigi DiBiase ... Director Complex Arrythimia - Montefiore Medical Center NYC
Dr. D.J. Lakkireddy ... Director - Kansas City Heart Rhythm Institute at HCA Mid-West
Dr. Rodney Horton ... TCAI - St. Davids Medical Center (In addition to AFIB ABL's, Dr. Horton is the most elite Watchman maestro I know of)
Dr. Amin al-Ahmad ... TCAI - St. Davids Medical Center (In addition to AFIB ABL's, Dr. al-Ahmad is THE Go-To Guy for pacer/ICD lead extractions)
Dr. David Burkhardt ... TCAI - St. Davids Medical Center (Dr. Burkhardt is a Stereotaxis expert and specializes in VT - Ventricular Tachycardia)

That is a brief list right off the cuff of excellent ablation EPs that have all been very well-trained in the Natale method ... Note: the last three are listed below the first three primarily because these three EPs are at St. Davids Med Center ... and as such, as great as they are, at St. Davids you can just as easily partner with the Maestro himself, which makes it very hard to argue against so doing!

Cheers!
Shannon