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Steps needed to get off of blood thinners

Posted by tobherd 
Steps needed to get off of blood thinners
June 27, 2018 05:24PM
Hello all - I'm trying to figure out just what I need to do to get myself off of blood thinners, assuming that's possible. I had two ablations done by Dr. Natale, with the last one (flutter ablation "touch up") in June 2014 - 4 years ago. I have not noticed any Afib since then, nor have any doctors picked anything up.

About 2 years ago, I ended up with pneumonia, and felt very nauseas for a couple of weeks. The doctor ordered a Cat scan...and they thought they saw a "wedge' in my kidneys - which was determined (after much conferring with a few technologists), that I may have had a small blood clot recently (then). I believe it was from a severe pull I had in my side the year before, right in the same area as my kidney, but no one was confident of just when it may have happened, or why. Because of this, my cardiologist increased my Eliquis to 5mg BI{D instead of the lower dose that Dr. Natale had me on, as a precaution, as one of my numbers was right "on the edge'...I'm not sure which one. I know I've had a normal ejection fraction.

Since my ablation, I was diagnosed with mild pulmonary hypertension, and perhaps diastolic dysfunction. Neither of these have been significant, and in fact, my numbers were better on my last Echo than they were last year. I also learned that the LAA affects the numbers when considering diastolic dysfunction...they look worse because of what the LAA does...(sorry, but I don't remember how to explain this - Shannon helped me at the time to better understand this)

SO...I would like to take more Omega 3's and other natural anti-inflammatories and good things for me, without worrying about any interference with Eliquis. I also don't want to have to worry about being on a blood thinner as I get older - maybe ending up on more medications, needing surgery, etc. OR having to remember it twice/day and then being in fear if I were to forget to take it....

I am not sure what my next steps should be. Do I need another TEE? Does Dr. Natale do phone consults? Maybe I need to get a monitor to be sure I am not having any silent Afib. And yes, I am considering getting the Watchman, but am not sure if I would still need to be on a blood thinner....and if so, does it even make sense to do that?

Shannon gave me a lot of information on much of this, but to be honest, I was driving and not able to give him my full attention - and I don't want to keep bothering him with questions.

Would be curious as to your thoughts.....thanks, Barb
Re: Steps needed to get off of blood thinners
June 28, 2018 02:08PM
Hi Barb!
Just my 2 cents. I know some, but wouldn't call myself an expert. I would first gather information:
1) "pneumonia" "mild pulmonary hypertension (PHTN)" Did they do a CT for pulmonary embolism? Do you have a coagulopathy like Factor 5? Have you had lung issues in the past or have a smoking history or sleep apnea that would influence PHTN?
2) A TEE might rule out pulmonary vein stenosis and would also get a good look at the atrial appendage (get a doctor you trust. I'm an echo tech and there are doctors I feel comfortable would do a good job evaluating and others not so much)
3) I wouldn't get a Watchman without good evidence for need.
4) Maybe a hematologist if possible genetic component to coagulopathy?
5) Mild diastolic dysfunction is called on most echos after age 40. Find a cardiologist you trust to explore this conversation and what you can do personally to maximize the health of your heart.
6) Monitor seems like a good idea.
Wishing you the best!!
Libby
Re: Steps needed to get off of blood thinners
June 28, 2018 03:04PM
It sounds like Natale isolated the LAA during your ablation. If so, they should have had you do a TEE six months after the procedure in order to measure the flow velocity in and out of your LAA. If you didn't meet the minimum flow requirements, you would have been instructed to remain on anticoagulants for life. If you don't remember all of these details, call TCAI and ask to speak with one of the nurses. They can pull your records and answer these questions.

You should know that their clinical experience has been that missing even just a dose or two can and does lead to strokes for people with isolated LAAs. So until you know with certainty whether your LAA was isolated and whether there was adequate flow velocity, then you absolutely should not consider trying to come off anticoagulants. The risk you face from that is far, far higher than any risks you face from the drug.

Further, if your LAA was isolated then you should definitely consider a Watchman. If you want to come off anticoagulants, that's how you do so. Also, ask yourself what the odds are that you will never, ever need to stop taking your anticoagulants for some reason. Medical procedures, injuries, lost drugs while traveling -- who knows? I'd say the odds you'll never need to stop anticoagulants are very low.
Re: Steps needed to get off of blood thinners
June 28, 2018 04:27PM
HI Libby and Carey - thanks for responding to my post smiling smiley

LIBBY] - I've had CT of my lungs, and other than a nodule that was double checked and unchanged, nothing wrong. I have never smoked. I have very mild sleep apnea (the lowest was a 5 in the "mild" range..mine was 8. The lung dr. didn't seem to think it was a big deal.
I had several TEE's after my ablation, and there were no big problems. The pulmonary hypertension showed up on an Echo at my cardiologist office - but thankfully, my number was lower this time that last year...so my cardiologist was happy about that (ME too)
I was surprised to hear you say that mild diastolic dysfunction shows up on most echos after 40 - wow..I didn't know that. Mine looked like it was more than mild, but Dr. Natale (who got my test results as I had freaked out after the Cardio told me it looked like I was stage 3), he said the test would look more severe due to ...something to do with Doppler A wave and mitral inflow....which is affected by the LAA abation I had...so it seems that I do have DD, but not nearly as bad as it first seemed.

CAREY - I did indeed have a LAA isolation ablation, 5 years ago. I had multiple TEE's afterwards. Normal left ventricular ejection fraction of 65%. Peak emptying LA appendage velocity was 58.5 cm/sec in Feb. of 2015. Then it seemed to be 32 cm/sec on Sept 2015 from a TEE. Then I had an Echo in May 2016 and it was 60-65%, "by visual estimation" - and same comment of 60-65% on the Echo done in 2017. I had one done a few weeks ago, but don't have a copy...(will have to ask for one).So it seems like other than one test, which may be an anomaly, the emptying velocity has been good...right?

It seems so odd to me that I have to worry about the possibility of a stroke more NOW, after having an ablation, then I did before...or am I not reading that right?

UPDATE- I did reach Dr. Natale's office this morning and they are sending me a 7 day monitor to wear, and asked for a copy of my most recent Echo. So it looks like the possibility of getting off of the Blood thinners is being considered, after various tests and conversations.
Re: Steps needed to get off of blood thinners
June 28, 2018 07:04PM
Quote
Carey


You should know that their clinical experience has been that missing even just a dose or two can and does lead to strokes for people with isolated LAAs..

That's pretty scary...because it's so removed from circulation that it won't dissolve, even if on thinners?
Re: Steps needed to get off of blood thinners
June 28, 2018 08:14PM
Quote
tobherd
Peak emptying LA appendage velocity was 58.5 cm/sec in Feb. of 2015. Then it seemed to be 32 cm/sec on Sept 2015 from a TEE.

That first number is excellent and would allow you to stop anticoagulants, but that second number is woefully short of adequate. TCAI explained to me that measuring LAA flow velocity is a difficult skill that most echo technicians don't do properly, even if they claim to know how. That's why I spent $1000 flying to Austin for my TEE instead of doing it locally. I didn't want to take any chances on operator skill being a factor in such an important decision. So your conflicting results probably reflect exactly that. One of those figures is very wrong and you don't know which it is.

Quote

It seems so odd to me that I have to worry about the possibility of a stroke more NOW, after having an ablation, then I did before...or am I not reading that right?

UPDATE- I did reach Dr. Natale's office this morning and they are sending me a 7 day monitor to wear, and asked for a copy of my most recent Echo. So it looks like the possibility of getting off of the Blood thinners is being considered, after various tests and conversations.

Yeah, you're reading it right, but your stroke risk is only greater than before if you interrupt the anticoagulants and your flow velocity is in fact more like 32 rather than 58.

Excellent that you contacted Natale's office and got them involved again. That's how you keep yourself safe doing this.
Re: Steps needed to get off of blood thinners
June 28, 2018 08:26PM
Quote
jpeters
That's pretty scary...because it's so removed from circulation that it won't dissolve, even if on thinners?

It's not so much that the anticoagulant isn't dissolving clots, but rather that it's preventing them from forming in the first place. The LAA contracts like the rest of the heart, so if the LAA is electrically isolated it may cease to contract adequately, leading to increased stagnation of blood in the LAA. But as long as you remain consistently on an anticoagulant that risk is eliminated. The problem is that if you stop the anticoagulant, even just for a day or two, that may be enough for a clot to form.

So yeah, that's scary and in my view an unacceptable risk over the long term, which is why I'm having a Watchman device implanted on August 2. Fortunately for me, the FDA wanted Boston Scientific to obtain more study results from men in their latest generation Watchman FLX device approval application. (Being included in the trial requires a CHADS-Vasc of at least 2, so women heavily dominated the study results since they get an extra point for being female.) Thanks to Shannon, I got accepted into that study, which means the device and procedure are free. No insurance approval necessary. All I have to do is pay my way to Austin.
Re: Steps needed to get off of blood thinners
June 28, 2018 11:45PM
Peak emptying LA appendage velocity was 58.5 cm/sec in Feb. of 2015. Then it seemed to be 32 cm/sec on Sept 2015 from a TEE. Then I had an Echo in May 2016 and it was 60-65%, "by visual estimation" - and same comment of 60-65% on the Echo done in 2017.

60-65% by visual estimation sounds like an ejection fraction and not LA appendage velocity.
Re: Steps needed to get off of blood thinners
June 29, 2018 11:32AM
Interesting discussion.

I had my first ablation with Natale in San Francisco at California Pacific Medical Center, my second at Scripps Green Hospital in San Diego, where I live. So far as I know, Natale is no longer working at Scripps in San Diego.

Can anyone suggest who I would contact if I wanted to follow up with him re a Watchman, or general anticoagulation issues?

Thanks!

--Lance
Re: Steps needed to get off of blood thinners
June 29, 2018 01:36PM
Quote
ln108

Can anyone suggest who I would contact if I wanted to follow up with him re a Watchman, or general anticoagulation issues?

Thanks!

Here's a great starting place for contacting Dr. Natale @ TCAI:

[www.tcainstitute.com]
Re: Steps needed to get off of blood thinners
June 29, 2018 02:42PM
Thanks, AB. I'm checking it out.

--Lance
Re: Steps needed to get off of blood thinners
June 30, 2018 12:14AM
Yes Libby you are right. The 60-65% reflects the ejection fraction. The other two numbers were for the peak emptying velocity. As they are not consistent with each other, Dr. Natale's office is going to get the disks and review them. I may need to have another TEE, but maybe not once they see the results themselves.

Amazing how much there is to learn about all of this. If need be, I may fly down to Austin to get the Watchman as well. First I'd like more information on what my numbers really are....

More to follow. Thanks for everyone's input. Much appreciated - Barb
Re: Steps needed to get off of blood thinners
June 30, 2018 08:04AM
Quote
Carey
. One of those figures is very wrong and you don't know which it is.
.

They could both be wrong. When presented with wildly varying measurements, the engineer in me is apt to call them all into question.
Re: Steps needed to get off of blood thinners
July 01, 2018 10:17PM
Wolfpack - Dr. Natale's office is going to look at the disks. The nurse I spoke with made it sound like they would have a much better idea by doing that....hopefully they are right.

Yes - 40, 32 and 58.....so I'm hoping it's at least 40. The nurse said 58.5 was actually too high...not sure why this hasn't come up before.

Barb
Re: Steps needed to get off of blood thinners
July 02, 2018 11:55AM
Hi Barb, first it is important to emphasize that a left ventricular ejection fraction is an entirely different messurement than is the LAA emptying velocity and the two numbers have very little correlation.

And a 58.5cm/sec LAA emptying velocity is not “too high” it’s very good, but you would still have to pass the Doppler A-Wave into the Mitral valve in-flow test that requires a robust and consistent amplitude on each consecutive heart beat measured right at the inflow of blood pumped from the left atrium and LAA into the in-flow opening of the mitral valve on its way to the left ventricle before being forcefully pumped to the rest of the body with each heart beat. As I recall, a less than consistent Doppler A-wave measure was what caused you to need at least a low dose of Eliquis in spite of the excellent LAA emptying velocity, but it’s been a long time since I saw your last TEE report and I could be wrong on that one.

Good that Dr Natale is checking this out for you as I had advised you to ask him to do when we spoke a few weeks ago to confirm everything.

And my personal feeling is that LAA Closure should be standard after LAA Isolation except in those who pass all three test including showing zero ‘smoke’ or SEC (Spontaneous Echo Contrast) within the left atrium and within the LAA after LAA Isolation along with passing both the LAA emptying velocity AND showimg robustly consistent Doppler A-Wave into the mitral valve inflow.

If you pass all these metrics with flying colors and with wide margins of safety then one might stop OAC drugs assuming Dr Natale of your LAA -Iso EP confirms that is okay for you and ONLY if you get the green light form your ablation EP. And in that case, I would also insist on another follow up TEE be done 6 to 9 months after the first post 6 month LAA-Iso TEE, just to confirm no change towards the negative in those robustly safe numbers.

If you pass with flying colors two such Post LAA Iso TEEs, each at 6 month intervals from each other after your LAA Isolation, then it would be extremely unlikely for any very late changes in LAA function to occur, and from all we know you should be perfectly safe stopping OAC ... but only assuming Dr Natale/LAA-Iso EP has evaluated your systemic stroke risk too and found that stroke score not to be above 2.0 when considering the ‘real’ cardiovascular risks that make up such a still incomplete stroke score metrics.

For example, most EPs I know are not going to count the 1 point for being a woman toward whether or not you could stop OAC post LAA Iso IF you passed all three of the tests described above with flying colors AND your CHADS-VASc score is not above an ‘honest’ 2.0 made up from very real risks like Hypertension, Diabetes, past TIA/strokes, CV disease etc etc.

Nevertheless, if you are even just borderline okay on your six month post LAA-Iso TEE, I strongly urge folks to get a Watchman, Atriclip or new version LARIAT-RS (RS stands for ‘Retrievable Snare’), which ever Closure method makes most sense for your overall case as determined in consult between yourself and your EP.

And for the risk averse, just be sure to go to a true maestro level Ablation center like St Davids. At least a center with tons of LAA isolation and LAA Closure experience to insure the LAA Closure experience is extremely safe. The Watchman install, for example, takes about 20 minutes to install in experienced hands like those of EP maestros Dr Rodney Horton, Dr Amin Al Ahmad or Dr David Burkhardt at St Davids ... any three of whom I would gladly send my wife, or myself, to for such a procedure If I had not already gotten my LAA Closure with an original early LARIAT 6 years ago with Drs Natale and Burkhardt performing that two man procedure on me at St Davids.

More and more large centers will be doing safe Watchman and other LAA Closure methods too going forward, but it’s hard to argue with the largest AFIB Ablation Research Center in the world with so many highly experienced operators there. In other words, you don’t have to wait a longer time and insist on Dr Natale doing your Watchman install, since either Drs. Rodney Horton, Amin Al Ahmad or David Burkhardt can knock any LAA Closure procedures out of the park consistently and with great confidence! Note: The minimally invasive Atriclip still requires a Cardiac Surgeon to install though the maker AtriCure has been promising a revised Atriclip
that can be installed by an EP as well.

Rodney Horton has roughly 7500 AFIB ablations under his belt now too, which to my knowledge is as much, or more, than anyone else in the US outside of the maestro himself in Dr Natale who is now at roughly 11,000 ablations that far exceed anyone else on the planet at this point and with no one even close to catching up to him anytime soon.

Certainly not while he is still in his prime at 57 yrs old. In all truth, it’s very unlikely any EP will ever duplicate, much less exceed, Dr Natale’s unique career accomplishments going forward as so many unusual factors would have to align in the stars, like being one of the core pioneers during the creation of AFIB ablation technology and understanding , and being selected as head of such a prestigious heart centers Ablation program at Cleveland Clinic at only around 37 yrs old ... who gets that kind of position so young? And an EP would have to possess Natale’s also unique passion and energizer Bunny incredible stamina for pushing the field forward with his enormous dedication to EP to even come close to being able to create the largest AFIB Ablation Research Center in the world ... much less TWICE as Natale has done ... first at Cleveland Clinic and then he duplicated and clearly exceeded that volume of production and research at St Davids the last 10 + years after he moved from CC to St Davids in late 2007.

Anyway, back to the other 11 elite level ablationists besides Dr Natale at St Davids that average around 14 to 18 ablations a day in their largest volume center in the world. No other center anywhere comes close to that volume done by this total of 12 highly experienced operators as colleagues under the directorship of Natale. Keep in mind too that the least busy of these 12 highly experienced EPs, averages approx. 250 ablations a year! A good many directors of other large AFIB ablation centers in big metro areas don’t often exceed that annual number, on average, as does the least experienced operator at St Davids.

The last key factor in appreciating what they have accomplished at St Davids Med Center, is the huge volume of persistent and LSPAF patients they treat there, with again a far greater percentage of their total caseload being these most challenging cases than at any other center in the world that I’m aware of. Shear volume of cases isn’t the only, nor most, important measure of an elite ablationists skill level, but when you combine such high volume with being able to consistently attract such a large percentage of the most challenging forms of AFIB to your care by referral EPs from all over the US and even the world (Dr Natale’s caseload averages just over 75% persistent and LSPAF patients!) ... that speaks volumes about the true quality and nature of the center and key operators there.

Cheers!
Shannon



Edited 2 time(s). Last edit at 07/02/2018 06:47PM by Shannon.
Re: Steps needed to get off of blood thinners
July 04, 2018 02:52PM
Shannon,

I live in Australia. Would you have any suggestions as to how I might go about finding who the premier ablationists are here?

Kind regards

Anne
Joe
Re: Steps needed to get off of blood thinners
July 04, 2018 07:52PM
I'd like to know as well, i am in Melbourne. I have googled some and found EPs who worked with some well known ones overseas. It's difficult to find out their experience/competency without inside information - which is difficult to come by.
Re: Steps needed to get off of blood thinners
July 05, 2018 10:12AM
Australia folks: Melbourne : Prof Kalman at the Royal , and Kissler at Alfred/ Cabrini. both are excellent. I have friends who've been ablated by each of them. I'm on the waitlist w Kalman, but if I can sharpen my lifestyle prevention factors even more, I would love not to go under the knife.
Sam
Re: Steps needed to get off of blood thinners
July 05, 2018 10:51AM
Google top ablationists in Australia for Shannon's list of the best.
Joe
Re: Steps needed to get off of blood thinners
July 05, 2018 06:52PM
Thank you! Good to know should i have the need in future.
Re: Steps needed to get off of blood thinners
July 08, 2018 09:59PM
Thanks for your always very informative reply, Shannon. As I write this, I am wearing a heart monitor as the first step to getting feedback on how things are ticking, and to be sure there is no arrythmias going on. Sent to me by the people at St. David's, as I agree...in spite of my Cardiolgist encouraging me to use one of the EP's on staff, I won't trust anyone with this aspect of my heart besides Dr. Natale and staff. And now, the other doctors you mentioned too.

As you know, I called them to see if I could get off of Eliquis, as I don't like being tied to a twice/day drug that has cautions for drug and supplement interactions, and is so important to take...otherwise you could risk a stroke. One of the members of his staff..Salwa? or Velma? said he/they would be reviewing the disks from my TEE's as I have differing numbers. I"m thinking they might need to do one again, but I'll see what they say. I don't remember what the answer was about the A wave....initially Dr. Natale didn't get that information from my TEE, but I can't remember if he ever did or not.....

Barb
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