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Mellanie at StopAfib.org

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thanks mellanie for your info i do appreciate it. i know there are people in this world suffering with far worse things than afib but  at the moment i am realy tormented and worried about the future prospects of having this afib and how its guna affect me as i get older.?  i think its mainly because i dont know anyone close to me who has it who i can talk to. i do know of poeple who have it(not many)  but i dont know them well enough to ask them indepth questions. things like how long have you had it or how long youv been in permanent afib etc etc? and is there any drugs that suppress that horrible fluttering feeling whilst in a permanent state of afib. ? its the thought of that feeling that frightens me you see. i cant even understand how some folk can have afib without knowing it until a E K G  picks it up.???
  • Posted Tue 19 Sep 2017 02:11 PM CDT
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hi mellanie, i just wondered wether or not you can shed some light on the progression of afib for me.? i am a 50 year old male, diagnosed with afib 3 years ago but had palps since my early 20s. im currently having night time episodes (vagal.?) maybe once a month. iv had 2 ablations and am now taking warfarin. and 300mg of rythmol daily. i am alot better than i  was but just wondered how long i could stay in a once a month episode state for.? is it common to stay like this for years and years? or is it common to progress further faster.? i would realy appreciate any info you may have.
  • Posted Fri 15 Sep 2017 12:59 PM CDT
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Ron,

My personal opinion is that one should do everything possible to get out of afib and certainly not live with longstanding persistent afib. Living with it causes fibrosis (scar tissue) to build up and just about guarantees heart failure and a stroke (unless you are religious in taking your blood thinner, even when you become frail and forgetful). This is just my personal opinion, and not endorsed by AHA or my organization. But, I cannot imagine living with this condition long term.

Mellanie
  • Posted Tue 19 Sep 2017 11:06 AM CDT
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thankyou for your reply mellanie i realy appreciate it. i dont have sleep apnea but i am trying to learn as much as i can about this afib i have, i have a good E P in england but i find there are no definate answers to this condition.?  i think what i am trying get my head around is the thought of living with my heart not been in sinus rythum permanently one day.? and how do people live when like this.? are the majority living a poor quality of life or not.? without sounding depressing i do sometimes feel realy fearfull of the future with my afib. 
  • Posted Sun 17 Sep 2017 02:26 PM CDT
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Afib generally progresses further and faster for most, though there are exceptions. We have no data to show who progresses and who doesn't, so no one can really give you any insight into whether you will progress, or not.

I've been traveling and cannot recall if you have sleep apnea, or not. That can make a big difference in your progression as it causes episodes to come more and more frequently.

Mellanie
  • Posted Fri 15 Sep 2017 01:13 PM CDT
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Hello,

i am wondering if there are any other resources to determine the success rates of individual doctors performing  ablations...besides memberships in the various heart rhythm societies etc. Choosing a doctor without enough information is troubling. I realize the high volume centers maintain their rates are the highest but often there are several doctors in these centers. Additionally the claimed success rate data is usually at least  a year or two old.

Thank you for your answer.
  • Posted Sun 03 Sep 2017 07:51 AM CDT
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This is a common question, and the answer is no. It's best to look for an electrophysiologist that is a member of the Heart Rhythm Society and holds the FHRS (Fellow of the Heart Rhythm Society) designation, indicating a high level of skill and expertise: You will find the locator at http://www.hrsonline.org/Find-a-Specialist - check the FHRS checkbox to search for an FHRS.
  • Posted Sun 03 Sep 2017 11:49 AM CDT
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 Could you recommend a link to top ranked cardiologist in my area. I live in Brooklyn,   Ny  Will consider doctors in ny.  I am not comfortable with my present doctor.  Thank you
  • Posted Sun 23 Jul 2017 08:38 PM CDT
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Sorry, I didn't get notification of your comment/request and am just now discovering it. Some of the top NY electrophysiologists are Dr. Vivek Reddy at Mt. Sinai and Dr. Larry Chinitz at NYU Langone. Over in the NJ area, there is Dr. Andrea Russo at Cooper Union and Dr. Suneet Mittal at Valley. You can find contact info for all at 
http://www.hrsonline.org/Find-a-Specialist (the Heart Rhythm Society is the EP society).
  • Posted Sun 03 Sep 2017 11:46 AM CDT
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Hi Melanie, Thanks for taking your time to answer all these questions.  You asked me what my chad rate is and it is 2, female and 66. No other major health issues, no high blood pressure or diabeties. But I can't stress more that three drs. nero and EP have told me aspirin at the most because of brain bleed history. Plus the reaction so far to Metropropanyl  and Rythymeral, so at present taking only natural things, yes to magnesium, Hawthorne, Coq10, also started the nattokinease cause Im feeling anxious about meds, but don't know if its helping or not. So Drs talk about minimaze..okay but don't I have to be on anticoagulants for awhile?  Any thoughts, advice, suggestions are very much appreciated ,
Thanks,
cribbed
  • Posted Thu 20 Jul 2017 10:33 AM CDT
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For those who are on anticoagulants before a minimaze, they will usually leave you on them for 3 months afterwards. But, if you're not on them already, they may not put you on them. It's worth talking to the surgeon you might consider using to see what they would do in YOUR circumstances because each patient is unique.
 
  • Posted Sat 22 Jul 2017 10:28 AM CDT
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Hi Melanie, 
Thanks for initiating this forum. It will help a lot of Afib patients. Keep up the good work. I read this everyday because I know it will help me a lot. You can have the information you need to know by simply reading it. It helps me a lot. 
  • Posted Wed 19 Jul 2017 08:13 AM CDT
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Thanks, Doncar. Glad it helps you.

Mellanie
  • Posted Sat 22 Jul 2017 10:26 AM CDT
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I have A-fib since last year, and find my balance has become really terrible almost unbearable, no doctor seems to know the cause since itès not medical, other then taking 120 mg of proprananol daily for my A-fib now,. I have always taken proprananol but not in this lrge a dose. I also get really bad Raynauds  in my hands and feet, believed to be cause by proprananol.. Anyone else have this problem, sure would like some information and help, My Doctor says use a cane, my friends say get another Doctor., My A-Fibe is paramoxamal, but bad enough.
Wanda
  • Posted Sun 02 Jul 2017 09:01 PM CDT
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I am afraid that I don't know what to offer. Would you be willing to post this on the forum as perhaps others can help.

Mellanie
  • Posted Sun 02 Jul 2017 09:08 PM CDT
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Hi
​I don't think AV NODE ablation is just reserved for people over the age of 80. These days, it does matter what your age is, My Electrophysiologist has done AV NODE ablations on SUPER ATHLETES. The thing with this debilatiing problem is, as you get older, the problem may get worse. I know I could possibly die from this procedure, but where do you draw the line between quality of life, and or not.
  • Posted Wed 14 Jun 2017 02:13 AM CDT
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Sorry, just now finding this message. The reason AV node ablation is generally a last resort is that you will most likely be in afib for the rest of your life. You will have to stay on blooid thinners for the rest of your life, and be very careful with them because staying in afib builds up fibrosis (scar tissue) in the heart, which increases the risk of stroke. The challenge is that as you get older, it gets harder to stay consistent with your blood thinners, which puts you at risk. 

Why are they not considering other options first, such as catheter ablation or surgery? 

I cannot imagine a super athlete with an av node ablation and personally do not know any who have had that done.

Mellanie
  • Posted Sun 02 Jul 2017 09:12 PM CDT
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Hi mellanie. Re magasium supplements. I feel that magasium is an important supplement for afib.  My cardologist  does not anysupplement traditional medicine.  I understand that magasium has blood thinning properties and some an cause lose bowels.  I want to take this supplement but am concerned because I take Prada and and sotalol.  Any adice will be appreciated.
  • Posted Sun 09 Apr 2017 08:46 PM CDT
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I am not aware of any blood thinning properties with magnesium.

You take it to "bowel tolerance", meaning start gradually and build up.

Mellanie 
  • Posted Sun 09 Apr 2017 08:54 PM CDT
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Hi Melanie! I am so happy to have found this forum. I am 86 and in January went into a-flutter which is now mostly a-fib. I also have severe sleep apnea, I thought there may be a correlation but my RT said no. Everything I have been reading is so interesting. I will share the abstract with her and see what she now has to say! Right now I am awaiting yet another opinion - seeing an EP. I requested this in January, was told no, and then was treated so poorly by 4 (at team) cardiologists (at the large HMO organization in No Cal) that it got to a point I didn't know who to trust. Working with them has caused more anxiety than my diagnosis. I finally found a wonderful cardiologist - but she put me on amiodarone - and SHE has finally suggested I see another EP to get another opinion. So thankful! So I hope, now after 3+ months I can get someone to spend time with me and figure out what's best for me. What a journey! 
  • Posted Thu 06 Apr 2017 09:44 PM CDT
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Correction: Dr Susan Redline 
  • Posted Fri 07 Apr 2017 11:04 PM CDT
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The video from Dr Susan Reding was so interesting! I will definately share it with my respitory therapist. She (my RT) did tell me that not wearing my bipap can contribute to pauses but never made me aware that arrhymias may follow after the pause. So nteresting!  (I am thin, 120lbs at 5' 9" , when I found out I had it I was so surprised. Sleep apnea can happen to any body type). 
  • Posted Fri 07 Apr 2017 11:02 PM CDT
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Helen,

I'm afraid that your RT is completely wrong. There has been much research, especially at Mayo and Case Western (and now Brigham, since Dr. Redline moved there from Case Western) showing the correlation. In fact, about 50% of those with afib also have sleep apnea. You may want to watch the video of Dr. Redline's presentation at our annual StopAfib.org AFib Patient Conference in 2015: http://www.stopafib.org/newsitem.cfm/NEWSID/565/ (Dr. Redline is at about 20 minutes in).

I hope you can find a good EP who can get your medication worked out. 

Mellanie
  • Posted Fri 07 Apr 2017 07:21 PM CDT
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Hi Melanie, as for the warfarin,yes,that's what I meant to say .My warfarin intake was too much and my inr reading was too high.Thanx.
  • Posted Sat 28 Jan 2017 07:51 AM CST
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Hi Melanie,
Yes I live in Magnolia, Tx which is about an hour or so from Houston, Tx & about 30 to 45 minutes from Conroe, Tx. I think I picked this up in the hospital. It is better but not completely gone. Guess I should be glad that I don't live south of Dallas at Cedar Hill cause I might be a lot worse. I wish you & your family a very "Merry Christmas"!
  • Posted Sat 24 Dec 2016 10:23 AM CST
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Hi Mellanie, I had not thought about ceder fever. I don't have any cedar here where I live in Magnolia, Tx at least not close to me but that is something I would have never thought about. So thankful that I am feeling better praying this ablation will keep me in NSR.
  • Posted Wed 21 Dec 2016 11:03 AM CST
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Lin, Cedar (actually, it's misnamed - it's really juniper) can blow in from elsewhere. In Austin, the nearest was 40 miles away in Georgetown. Here, we sometimes get a little of it, but the closest cedar we have seen is about 45 miles away. It's really bad south of Dallas at Cedar Hill. So, it doesn't have to be where you are located. That is why it's so bad in Central Texas, but you're probably closer to Houston, aren't you?
  • Posted Thu 22 Dec 2016 09:29 AM CST
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Good morning Mellanie! I read your story and see that your afib was aggravated by anesthesia during dental surgery. I just posted under a new category here "dental surgery with a-fib". I would appreciate you reading my post and commenting. Also would appreciate if you could explain on that thread more about your experience with dental surgery. Have a Blessed & Great Day! mustang girl (aka Elaine).
  • Posted Thu 20 Oct 2016 09:25 AM CDT
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I think I know what you're talking about now, though it's not in my story anywhere, so that was confusing.

But, I think I may have posted at some time here in the forum that in having a dental procedure once AFTER my afib surgery, my dentist called my surgeon and they both thought regular epinephine-based anesthesia would be OK. It wasn't - my heart started racing for a few hours afterwards.

Since that time, my dentists have always used lidocaine, which is epinephrine free.
  • Posted Thu 20 Oct 2016 09:45 AM CDT
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I think you must have me confused - I don't recall anything about dental surgery in my story.
  • Posted Thu 20 Oct 2016 09:35 AM CDT
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Thanks Melanie
  • Posted Mon 10 Oct 2016 12:05 AM CDT
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I am so happy thar I found Dr. Reic. Prystowsky, at St. Vincent Care Group, in Indianapolis, IN he is perfect for me. he has time for me and my question. I've had 2 cardiovesion. this last one seems to be working me. If you have a-fib please get a excellent EP. also having found this form is great.. tks for the help. Beverly Lenzo
  • Posted Sun 02 Oct 2016 10:57 PM CDT
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Beverly, You will be delighted to hear that we did a video interview with Dr. Prystowsky at the recent AF Patient Conference and those videos will be available soon on My AFib Experience. We have to get them edited, and they have to go through American Heart Association Science Reviews, but hopefully that will be fairly soon. ~~Mellanie
  • Posted Sun 09 Oct 2016 07:02 PM CDT
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Melanie, if I sign up for the conference on afib to watch at home, do I have to watch it when it is going on or can I watch it later and more than once.
  • Posted Wed 14 Sep 2016 12:42 PM CDT
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Soon after the conference, you will be able to replay all livestream sessions. And once the videos are ready, those will be available as well.
  • Posted Wed 14 Sep 2016 05:03 PM CDT
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I meant Eliquis
  • Posted Mon 12 Sep 2016 11:20 AM CDT
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Hi Melanie in one of your blogs you gave a website where we can obtain assistance with the cost of Eliauis, I did call and got some response they followed up but I inadvertently deleted their number. Can you post or send me that info again? Thanks much.
  • Posted Mon 12 Sep 2016 11:20 AM CDT
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Sorry I failed to get back here sooner. Here is the site for assistance and copay cards: https://www.eliquis.bmscustomerconnect.com/eliquis-360?TC=37861 and here is the site for applying for Eliquis financial assistance: http://www.bmspaf.org/Pages/Home.aspx There are phone numbers on both pages, but I am not sure which program you are referring to.
  • Posted Sun 09 Oct 2016 07:06 PM CDT
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I'm sorry - we're running as fast as we can on site preparing for the afib patient conference. It will be next week before I can recall where it's posted. Sorry.
  • Posted Wed 14 Sep 2016 05:09 PM CDT
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Dear Mellani,
I wish to post a topic but I don't know how.
My topic is this.
How long should I be on Xrealto before my  Catheter ablation
Please help me
Thank you
Best regards
G.Azzopardi
  • Posted Thu 08 Sep 2016 07:01 AM CDT
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Gaetan,
I've been traveling since your message came in, but I reached out to the company that created and manages MyAFibExperience.org to make sure things were working properly. Here is what they said:
"Yes it is. Members are able to start a new discussion (red ‘Start a Discussion’ button) from the MyAfib page, the main Forum page, and within each of the category pages."

I hope this helps.

Mellanie
  • Posted Sun 11 Sep 2016 10:30 AM CDT
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Don't know how to find her post. Yours was first post I have done.
  • Posted Sun 12 Jun 2016 04:57 PM CDT
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I think with supplemental insurance on Medicare it is about $38 a month at Costco. If your income is under $25,000 a year you can apply with Bristol Meyers to get it for free. perhaps the Senior citizen complaining of the cost would qualify if retired.
  • Posted Sun 12 Jun 2016 11:43 AM CDT
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Thanks for the info. $38 is pretty reasonable considering that the full cost is around $300/month. Could you post this info on the thread where she was asking about it. Thanks.
  • Posted Sun 12 Jun 2016 12:01 PM CDT
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Melanie, regarding Eliquis, I was told you cannot use the $10 coupon if you are on Medicare.
  • Posted Sun 12 Jun 2016 10:49 AM CDT
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My druggist has Eliquis in generic even when Walmart didn't.
  • Posted Wed 14 Sep 2016 01:16 PM CDT
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Doesn't Medicare cover most of the cost until you hit the donut hole? This is for those of us not yet on Medicare, for whom the co-pay is very high.
  • Posted Sun 12 Jun 2016 11:17 AM CDT
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Perhaps you might be interested in this: http://health.usnews.com/health-care/articles/2016-05-06/is-daily-blood-thinner-needed-for-irregular-heartbeat
  • Posted Sun 08 May 2016 08:52 AM CDT
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Melanie. I want to have an ablation for my afib. I had two cardo versions and two different meds that did not work. I have had no drug reactions or in any way disabled. I walk 2 to 3 miles a day. The reason is mental fatigue. I don,t know my. Afib will come. I am fine fora few days and back in afib this hasten goinging on for about nine month. I am scared when it occures. I probably can try other meds But will opt for an ablation. My ep said if it does not physically bother you. Ablation should bethe last resort but said that it will have to be my decision new meds or ablation. I decided to call his tomorrow and arrange for an ablation. I hope I am making the right because it does have risks but I just want to feel I do have some controll and hope it works. Also Melanie if an ablation works will it prevent future damage to my heart. I amso scared. I also am diabetic have liver disease from undected hemochromatosis and coronary artery diseAse. Thank you. Sometimes I wish we could meet face to face with some of the people we correspond with on this sight.
  • Posted Thu 17 Mar 2016 03:21 AM CDT
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