AF Page Message Board Entries

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Welcome! This message board serves as a patient information exchange area, and was created in response to the many requests received from our Maze patients that they 1) have a way to contact each other, and 2) be able to help others by sharing their experiences and addressing concerns posted by AF sufferers and others who may be considering the Maze procedure. Well, here it is!!!

TECHNICAL ADDENDA: AOL's user forms set-up is a bit primitive and you must use your scroll button to check for new messages.

Also, since this message board is more or less a modified guestbook, replies to postings are not threaded. This means that you must fill in the subject field labeled "RE: ______" in order for your reply to be posted as a response to a specific message...

Thanks!

Here are what some previous visitors have posted to the message board:

[Reply to Message] [Add New Message] Posting of Dec 24, 2005, 00:01 EST

NEW: AFib struggler

I was diagnosed almost 4 years ago with AFib. I have tried digoxin, Rythmol, Norpace and am back on Rythmol and atenenol, had an EP study, along with 2 ablations with no avail. The quality of my life is none. I rarely leave my home, can't exercise and have gain over 20 pounds from meds and no exercise, no social life, and rarely leave my house in the afternoon and evening when episodes are most prevalent. I am very frustrated and would like to know what my options are. I am a 46 year old women, no other heart or health problems have been found. I am at a lose on what to do. I have kids and a husband to take care of. Any ideas or direction to go in? Thanks Chris

From: Chris Kruse, WA

[Reply to Message] [Add New Message] Posting of Dec 24, 2005, 00:02 EST

NEW: AFib struggler

From: Chris Kruse, WA

Reply to Message] Add New Message] Posting of Dec 28, 2005, 15:03 EST

RE: av node ablation

hallo ive had a fib for years and tried all medicines to wich im to sensitive and cant handle,ive had a pulmonary vein ablation and this worked for a short while,now im back to normal with frequent a fib ive been told that i have to have a av node ablation ,however this is final?and complications and short ness of kife etc.youmention maze ,what is the maze you had ,can u explain etc and if i cold get it in uk thanks tony

From: tony, United Kingdom

Reply to Message] Add New Message] Posting of Jan 12, 2006, 13:00 EST

RE: to Richard, United Kingdom re:palpitations

Richard, I know this is a little late of a reply but I am new to this website. I have had afib off and on for about 20 years. I usually get episodes that seem to be triggered by food and/or alcohol. My symptoms are much like you described. I also urinate excessively during the afib. I took Lanoxin for the last 9 years and it did a pretty good job of keeping the afib in check. I would get episodes every year or two. Last week my doctor changed my medication to 80mg of Sotalol twice a day after I had to go to the hospital because of an episode. I had a minor episode of afib last night that lasted to the morning and experienced excessive urination. The doctor told me to take some Pepcid to alleviate the gastric symptoms that triggered the afib. I just wanted to let you know there is someone else out here that has similar experiences as you.

From: Bob Z., AR

Reply to Message] Add New Message] Posting of Jan 15, 2006, 01:16 EST

Ablation Referral

Has anyone out there had an ablation done by Dr. Chun Hwang in Utah or know someone who has? We were recently referred to him and can't seem to find much information about him. Any morsel of information no matter how small would be greatly appreciated!

From: erika, CA

Reply to Message] Add New Message] Posting of Jan 15, 2006, 02:32 EST

RE: Peter in Boston

Peter, I'm no doctor,but I do have an opinon re your AF. Moderate your activity level and exercise regimen. I know doctors all tell you to exercise regularly, but few of them have AF. It appears the MAZE procedure is the only thing that cn really stop it, but slowing down and taking some sort of nerve medicine when your attacks are most severe seems to help. I think your elestrical signals are getting crossed so quit sending so many of them. Take it a little easier. You're not going to stop AF without some major surgery, think MAZE, and if you can't handle that, just give your heart a break and quit working it so hard. Hope this will help you, it has me. I'm still alive. Dennis

From: Dennis Farrington, FL

Reply to Message] Add New Message] Posting of Jan 16, 2006, 06:02 EST

RE: Debbie, MI

Hi Debbie - have also had a Maze procedure while having valve work done. Have been in and out of AFib - mostly in - ever since then. Cardioversion is not an option for me as I have already thrown clots - but may be for you. Talk to your cardiologist and electrophysiologist and see what they think they can do. You still have other options.

From: Carl , RI

Reply to Message] Add New Message] Posting of Jan 16, 2006, 06:02 EST

RE: Debbie, MI

From: Carl , RI

Reply to Message] Add New Message] Posting of Jan 18, 2006, 17:19 EST

Afib and Sleep apnea

Erich: I was wondering if the breathing machine helped your AFib. I too have been diagnosed with Afib and I believe I may have sleep apnea. I have been refered to a doctor about an ablasion but obviously would like to avoid this if I could

From: Dan Atherton, MI

Reply to Message] Add New Message] Posting of Jan 19, 2006, 21:58 EST

Barnes-Jewish Hospital and Washington University

There is a post on the Maze Alumni Board asking for any maze patients who had their maze done at Barnes Jewish Hospital in St. Louis to contact Marci Baily there. They are wanting to update all their records and information on their past patients. The maze board address is www.mazesurgery.org you can click on Marci's name there and Email her.

From: Jack Drum, IL

Reply to Message] Add New Message] Posting of Feb 08, 2006, 12:59 EST

NEW: Sleeping and A-Fib

I have been hospitalized three times now for a-fib always occurring while I was sleeping, I have palpations sometimes when I eat, specially bread. I need to know is there anyone out there that has had this problem? Is it the Vagal Nerve doing this? Is it a digestive problem? What has been your salvation if any? I know that it is something, has to be. Kelly

From: Kelly Jamison, WI

Reply to Message] Add New Message] Posting of Feb 09, 2006, 23:27 EST

NEW: less invasive procedures?

I'm trying to find out what the newest "minimally-invasive" procedures are for AF. Thanks!

From: Jan, NY

Reply to Message] Add New Message] Posting of Feb 14, 2006, 19:58 EST

NEW: help?

I am 21. when i was 15 i first experience AF. the doctors that i went to for it told me that it was due to a medication. since then i have gone to the emergency room three different times, and had to have my heart stopped to slow it down. every other day or so it flutters and i feel sick. i don't know much about it and am just now looking into what exactly it is and what it means for me. every cardioligist tells me that i am fine and there is nothing wrong with me. but since that first incident when i was fifteen its been happening. never before that. i stay away from caffiene to try and avoid palpitations but it doesn't seem to help. after extensive tests i am still told i am fine. maybe someone who has experienced AF first hand could email me and let me know what they think? thanks a lot

From: Kayli, WA

Reply to Message] Add New Message] Posting of Feb 14, 2006, 19:58 EST

NEW: help?

From: Kayli, WA

Reply to Message] Add New Message] Postig of Feb 17, 2006, 13:58 EST

NEW:

I have been advised by my electrophysiolgist to have a pacemaker and ablation . I am concerned about cutting the electrical pathway off, by cutting the AV node . and having to rely completly on a pacemaker to control my heart.What if the pacemaker should fail, and how safe are they. what happens if I have to have surgery after it has been installed as the heart stays in A Fib I have am on Warfarin, which would have to be reduced to thicken up the blood.what is the chance of a stroke then. Have a lot of this kind of pacemaker been installed? Why does the heart stay in A fib, would it be better to have the Pacemaker with the fibrallter in it.

From: shirley lawson, British Columbia

Reply to Message] Add New Message] Posting of Feb 19, 2006, 20:42 EST

NEW: Stenosis after ablation

I'm looking for people to speak with who have been diagnosed with severe stenosis after catheter ablation. I had my ablation performed at the Cleveland Clinic by Dr. Natale and have severe stenosis in 2 veins and mild stenosis in the other 2. I'm have shortness of breath and chest pain. I'm considering angioplasty but understand that the success rate is only 50%. This is a serious side effect and I was suppose to be at the best place in the country for this procedure. Searching for options..... Jim

From: Jim A., OH

Reply to Message] Add New Message] Posting of Feb 22, 2006, 14:02 EST

NEW:

I've been diagnosed with AF.I have been on Warfarin for sometime now awaiting surgery. I would like to know what will happen to you if you do not have the surgery on time and what are the side effects of warfarin when you have it for a long time? I also have constant migraine so painful that my eyes hurt. I would like to know if it has anything to do with the AF. I lost sight in my left eye before i was diagnoised with the AF. I have since regained my eyesigt but would like to know if it likely to happen again. Thanks very much

From: Mary Oseku- Afful, Ghana

Reply to Message] Add New Message] Posting of Feb 25, 2006, 10:41 EST

NEW:AF/ablation/inplnt/ defibillator

I been suffering with AF for 40 years.Have tried lot of medicines,but they have no control.It mostly comes at night when asleep, lasts any thing from 12hrs to 35 hrs then stops by itself, till next time. I can,t take betablokers due to asthma possibilty.Have done most of the tests in hospital,and all is in order with the heart.On the last appointment Dr suggested Ablation.How effective is this procedure in curing AF,and any side effects, and has any body any experince of a device called defibillator which is like a pace maker and put inside the body.any help will be greately appreciated. I am 73 yrs old and keep very good health and no other disease except AF Ken London.

From: Karnail Herr, United Kingdom

Reply to Message] Add New Message] Posting of Feb 28, 2006, 10:57 EST

Slots 777

What is the most important information I should know about Cymbalta?

From: Alexander, Russia

Reply to Message] Add New Message] Posting of Feb 28, 2006, 21:10 EST

NEW:

I am new here to the message board. I have had AF for the last three years and have had the inversion twice. I never go back into rythem, ever. I am thinking of Ablation as a relief for my AF. What should my expectations be? I think I might be better off with Ablation and a pacemaker. Feed back would be apprecated. Dave Looman

From: Dave Looman, NE

Reply to Message] Add New Message] Posting of Feb 28, 2006, 21:10 EST

AF and pacemaker

From: Dave Looman, NE

Reply to Message] Add New Message] Posting of Feb 28, 2006, 21:11 EST

New. AF question

From: Dave Looman, NE

Reply to Message] Add New Message] Posting of Feb 28, 2006, 21:12 EST

AF question

From: Dave Looman, NE

Reply to Message] Add New Message] Posting of Feb 28, 2006, 21:17 EST

NEW:

From: Dave Looman, NE

Reply to Message] Add New Message] Posting of Feb 28, 2006, 21:17 EST

RE: NEW:

From: Dave Looman, NE

Reply to Message] Add New Message] Posting of Mar 03, 2006, 02:27 EST

NEW:

For what it is worth. I have had an a-fib issue since 1997, and have tried just about every anti-arrythmia drug on the market. My a-fib has even caused me to have an episode of cardiac arrest. I have gone through one pacemaker, and I now sport a defibrillator which I have worn for three years. In that three years my defibrillator has attacked me 32 times, with one particular event delivering 18 shocks in 2 hours. I have had two ablasion procedures performed, with one of them being an a/v node ablasion. I am now 100 percent pacemaker dependant.On my last doctor visit I was informed that I am in a-fib about 50 percent of the time. For everything I have gone through in the last 9 years, nothing has helped. I would undo it all if I could, as my quality of life has steadily declined to the point that I at times wish I had died three years ago. There you have it, my two cents worth.

From: Steven, KS

Reply to Message] Add New Message] Posting of Mar 03, 2006, 02:27 EST

NEW:

From: Steven, KS

Reply to Message] Add New Message] Posting of Mar 03, 2006, 02:28 EST

NEW:

From: Steven, KS

Reply to Message] Add New Message] Posting of Mar 03, 2006, 02:29 EST

NEW:

From: Steven, KS

Reply to Message] Add New Message] Posting of Mar 03, 2006, 02:29 EST

NEW:

From: Steven, KS

Reply to Message] Add New Message] Posting of Mar 03, 2006, 02:32 EST

NEW:first time

this is a test as the last message was lengthy, and it disappeared.

From: Steven, KS

Reply to Message] Add New Message] Posting of Mar 03, 2006, 02:35 EST

RE:

sorry for all of the posts, when I hit the submit button it says page not found, and I did not realize I was sending the same post over and over again. sorry

From: steven, KS

Reply to Message] Add New Message] Posting of Mar 05, 2006, 00:20 EST

RE: Looman and Afib

Do you mean you are in cronic Afib? I assume you have already seen an electrophysiologist? Or not? If I were you I would have an ablation and forget about the pacemaker for now. In my book it is the last resort. I have lived with on and off Afib since my open heart surgery in 1998. I had RFablation last April. For a couple of months I was doing fine, my doc even discontinued my cardiac medications. But in october I was back in Afib and it was more stubborn than before. Now I am back to square one and back on flecanide and coumadin. My doc says that "an area must have grown back" whatever that means. I might try ablation one more time, I am not going to give up. February was heart month and local hospital's famous heart surgeon held a seminar on Afib. He is developing a new minimally invasive procedure to cure Afib with success rate of 80 to 90%. All this came directly out of his mouth while I was sitting there. He has not done any officially but will start doing them in April-May or so. I am pretty sure that he will be doing the procedure on me in a year ot two. All you people out there who are thinking about having an ablation, go for it. The procedure itself is almost painless and you are out of there after an overnight observation. Success rate depends on how badly your atria are stretched out (enlarged). The worse, the lower is the success rate. In the best cases 60 - 80%. They are pretty good odds for someone who has not been in Afib for too long. I had no negative side effects from the procedure. In fact, I could have gone back to work right after release from the hospital. Use pacemakers, A-V node ablation and defibrillator as a last resort. Once all those things are done, they are permanent and cannot be reversed even if you want to. You are stuck.

From: Tuuli, VA

Reply to Message] Add New Message] Posting of Mar 05, 2006, 00:21 EST

RE: Looman and Afib

From: Tuuli, VA

Reply to Message] Add New Message] Posting of Mar 05, 2006, 02:57 EST

RE: ablation referral

Hi Erika I'm new here, and am looking on behalf of an AF sufferer, and was wondering if you had any reply's to your question on Ablation. The page I looked for in relation to your entry came up blank. I hope you have had soem good feedback so far

From: Jill, New Zealand

Reply to Message] Add New Message] Posting of Mar 05, 2006, 19:56 EST

RE: Steven - defib shocks

Steven, been there, done that, but only got five lightning bolts to the chest. If I'd had wire cutters and could have reached them, I think I'd have used them at that moment. I haven't had any more jolts, but have really dialed down my activities. Maybe that would help you. Good luck.

From: Dennis Farrington, FL

Reply to Message] Add New Message] Posting of Mar 05, 2006, 20:09 EST

Post defib

Allie, thanks for your concern. I'm doing fairly well now. AF didn't cause heart failure, V-tach did. Also congestive heart failure, also MI etc... 9 days in Critical Care Unit where they called my wife in to tell her I wasn't going to make it so they asked her what to do. My wishes have been pretty clear for years. Medication, food when I could eat and a quiet room. No tube feediing etc... If I went, I went. If not - - - I'm still heare. EF is about 25%.

From: Dennis Farrington, FL

Reply to Message] Add New Message] Posting of Mar 05, 2006, 20:18 EST

Mary/WA

Dear Mary, it's good to hear from you again. I'm very glad you're getting along so much better now. Stay in Sinus. Mary, will you give me a short course in the Vegas nerve business? I've had some severe bowel movement problems since my last severe (with several) cardiac episodes. Have found no answers after 18 months of pretty tough problems and every kind of constipation med on the market. Just saw something on the "Millionaire" show that reminded me vaguely of some posts I read here some time ago and remembered you know a lot about everything. I'd appreciate it if you have the time, if not, perhaps you could point me in the right direction for further research. Thanks again and glad you've been in sinus mode for such (for you) an extended period. (How's your brother?. Thanks, I'll be checking a little more frequently now.

From: Dennis Farrington, FL

Reply to Message] Add New Message] Posting of Mar 05, 2006, 20:27 EST

Geri:

Thanks for reply, Geri. We all have troubles, but do the best we can with what we've got. There's no question the Medtronic device saved my life. I was in a remote place on an island in Michigan when I had the attack due to overexertion. I had my car keys with me and managed to use the Panic alarm to eventually have someone find me before the car battery quit. Got air evacuated to the mainland and treated. It was an MI. That whole procedure was not as bad as what followed after my wife flew up to get me and drove me home. 11 days hospitalization (9 in Critical Care), I'm hanging in and happy to still be here. Thanks again. Dennis

From: dennis Farrington, FL

Reply to Message] Add New Message] Posting of Mar 05, 2006, 21:02 EST

NEW: Mary - WA

Mary, in reading some of the older messages (to catch up), I've found the nerve I referred to is the Vagal nerve, not the Vegas nerve. (Too much TV, I guess). Anyway, it apparently is involved with the "Autonomic Nervous System" which apparently has something to do with the digestive system. Maybe that's the direction in which I should be heading? One other item: My fairly young, new cardiologist has informed me that it is absolutely impossible for me to feel any symptoms of AF even if I'm beating at 500 beats per minute. I ALWAY know because the tip of my nose tingles like it used to when flying a C-54 whose engines I couldn't get sychronized. Also, lips get numb and buzzing in my head. Why does he insist I can't tell? Is there anything in the literature that specifically addresses this issue. I KNOW when I have AF, so do all the many others on this board. How do I respond to his conviction? I don't want to confront him about it because he's a good guy trying hard, but sometimes I think he may not understand some things that board member here find to be pretty universal knowledge. Mary? Anyone? Thanks for a little help from any source, but I'd really like a Medical Journal source I could quote to him (or present to him). Thanks to anyone who knows. Dennis

From: Dennis Farrington, FL

Reply to Message] Add New Message] Posting of Mar 09, 2006, 11:40 EST

NEW:

Hi all AF sufferers.I have been in AF for seven years now and last year had two ablations including PVI. No success but after all this and several scans I was diagnosed with an ASD.A hole in the atrial septum. Now that I have read up on this all the symptoms that I have had are obviously connected. I would suggest you check this out with your Cardiologists as a possible cause for AF.I cannot believe that it was overlooked. I have now had it repaired and another ablation carried out but so far no result. Probably due to an enlarged atria. I am considering AV ablation and a pacemaker as my last option. I am 52 and active.Does anyone know what life expectancy is with a pacemaker and will I feel any improvement.Thanks and please let me have your comments.

From: Chris Olding, United Kingdom

[Reply to Message] [Add New Message] [Posting of Mar 10, 2006, 05:55 EST

NEW: MAGA

MAGA ON LINE

From: MAGA, Tonga

[Reply to Message] [Add New Message] [Posting of Mar 11, 2006, 09:48 EST

NEW: on web site

hi just leting u know i am 34 and hav af 13 years i had an episode 3 weeks ago i am on 80mg sotalol and find they leave me very tiread and feeling of heavy stomach

From: ashling, United Kingdom

[Reply to Message] [Add New Message] [Posting of Mar 13, 2006, 13:37 EST

NEW:

hey can we talk about STRESS and a major attack of atrial fibrillation? who knows about this and did it happen to you?

From: barbara, PA

[Reply to Message] [Add New Message] [Posting of Mar 13, 2006, 13:52 EST

NEW: Find a DR.

Where can I find a DR. in the California area of San Jose or the Central Coast in between LA and San Francisco?

From: Omer Brunelle, Mexico

[Reply to Message] [Add New Message] [Posting of Mar 15, 2006, 19:27 EST

RE:

a have no longer get arithmias since i quit taking B vitamins,just to proof tha i started taking them,and within two days i had arithmias,i usualy get the urge to urinate a lot when is happening.... i still only take avapro for my blood presure and cumadin.

From: george, Greece

[Reply to Message] [Add New Message] [Posting of Mar 15, 2006, 19:27 EST

RE:

From: george, Greece

[Reply to Message] [Add New Message] [Posting of Mar 18, 2006, 20:54 EST

RE: Find a DR.

Here is a address of a EP's look up. http://www.hrsonline.org/find_heart_rhythm_specialist/default.asp If you can't get this, mail me jackdrum1@insightbb.com I will mail the information to you. Jack

From: Jack Drum , IL

[Reply to Message] [Add New Message] [Posting of Mar 20, 2006, 11:24 EST

NEW:

I am 28 and just been diagnosed with AF. I'm on 80mg of Sotalol daily. I feel tired and a loss of appetite. I also feel tightness in my chest and hard to breathe. It feels as thought something is pulling at my heart. It feels like gas, but it's not. Can anyone tell me if they have this feeling in their chest?

From: Jacqueline, Nova Scotia

[Reply to Message] [Add New Message] [Posting of Mar 21, 2006, 17:47 EST

Tykosin and ablation

Hi: My father, age 71, has had AF for 10+ years and has been on a number of medications, including Amiodarone, that have not worked for him. His cardiologist in Toledo, Oh, finally recommended that he get an ablation. For a second openion he went to the Cleveland Clinic and the EP there recommended that he get onto tykosin for 3 months prior to and 2 months post the ablation; this is the standard protocol there. Per the Cleveland EP this reduces the chances of arrhythmia post ablation, however, the risks associated with tykosin are quite dangerous. I have three questions: 1- Are very many EPs recommending the use of tykosin? 2- Has anyone been on tykosin? If so, what has been your experience like? 3- What are the pros and cons of using tykosin on ablation? Thanks. A

From: A, CA

[Reply to Message] [Add New Message] [Posting of Mar 21, 2006, 17:47 EST

Tykosin and ablation

From: A, CA

[Reply to Message] [Add New Message] [Posting of Mar 23, 2006, 17:13 EST

NEW: Going in for Ablation

I am going in for ablation surgery on May 2. I am 33 years old and have had AFIB for about 6 or 7 years. Flecanide, toprol, Coumadin, all of the normal meds. Had the shock last april and it worked for about 5 months, then slowly but surely it returned. Now it is time to let them go in and try and fix it once and for all. I trust my doctor, who is out of Sacred Heart in Spokane, WA. Anyone know what I should expect after release from the hospital? Thanks

From: Paul, WA

[Reply to Message] [Add New Message] [Posting of Mar 25, 2006, 05:55 EST

NEW: AFIB symptoms

I've asked before, but no response from anyone so far. What SPECIFIC symptoms does anyone experience when having an AF attack? My doctor says it's not possible to know, but I just woke up at 0400 (again) with tingling nose, numb lips & tongue, vibration in my head. It's AFIB, but Dr says impossible to tell when you're having it. Give me some back up ammo, please. I know you all have symptoms because I've been reading and posting on this board for several years. Thanks.

From: GoodOleDen, FL

[Reply to Message] [Add New Message] [Posting of Mar 26, 2006, 09:15 EST

NEW: Mary - WA

Thanks for the invitation, but I'm too nervous to respond to hot links now with all the spam. viruses etc... I think I remember your address, but will have to run a check ti find it again before I respond. Sorry, abundance of caution now as you seemed to have developed.also. Thanks for the invitation in any event. I've gotten several responses, but none from anyone posting on the board. Apparently you had good reason for setting up your own site. Take care, Den.

From: GoodOleDen, FL

[Reply to Message] [Add New Message] [Posting of Mar 26, 2006, 21:40 EST

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From: 5fNQW6fIv9, Pakistan

[Reply to Message] [Add New Message] [Posting of Mar 26, 2006, 21:41 EST

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From: lBNb0CdZJe, Ukraine

[Reply to Message] [Add New Message] [Posting of Mar 26, 2006, 21:41 EST

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From: JOKGyBSFyQ, Guam

[Reply to Message] [Add New Message] [Posting of Mar 27, 2006, 06:04 EST

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From: cESFp1nKC3, Pakistan

[Reply to Message] [Add New Message] [Posting of Mar 29, 2006, 05:56 EST

agree

I want mp3 player. What will advise?

From: Anton, United Kingdom

[Reply to Message] [Add New Message] [Posting of Mar 29, 2006, 11:28 EST

RE: AFIB symptoms

It is hard for one person to tell another what symptoms to look for in AF. Every ones symptoms seem to vary, and a few people do not notice any symptoms. There are some that would be sort of general. Shortness of breath, irregular heart beat, frequent urination when a episode startes. You need to post your question on a more active board. Click on my name to write me, or you are invited to go to my web site, AFib Cures, at http://health.groups.yahoo.com/group/A-fibcures/ Best wishes. Jack Drum

From: Jack , IL

[Reply to Message] [Add New Message] [Posting of Mar 30, 2006, 19:23 EST

agree

I must confuses your site is really cool!!! Great site, great idea, just all round great work, everyone. www.photovideostore.info

From: Alex, United Kingdom

[Reply to Message] [Add New Message] [Posting of Apr 01, 2006, 08:48 EST

agree

Good site. Me very much has liked.

From: Leonid, United Kingdom

[Reply to Message] [Add New Message] [Posting of Apr 01, 2006, 10:24 EST

Digitalcameras Store

I want mp3 player. What will advise?

From: Anton, United Kingdom

[Reply to Message] [Add New Message] [Posting of Apr 02, 2006, 18:07 EST

agree

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From: Bestik, United Kingdom

[Reply to Message] [Add New Message] [Posting of Apr 04, 2006, 15:11 EST

RE: Warfarin

I have been on Coumadin (Warfrin) for nearly five years with no side affects other than a bloody nose when the INR is high (clotting time longer), above 3. I have my own test kit and test myself weekly and adjust the dosage to be in the INR 2 to 3 range, or 2 to 3 times the normal clotting time. I have a back up hospital test done one a month to check on the home test kit which is FDA approved for home use. Your loss of sight was undoubtedly a blood clot which redissolved when reaching an INR which allowed this to happen. It is important to be above INR of 2.

From: Bill Gorman, Select State, Province or Country

[Reply to Message] [Add New Message] [Posting of Apr 04, 2006, 15:12 EST

RE: Warfarin

From: Bill Gorman, Select State, Province or Country

[Reply to Message] [Add New Message] [Posting of Apr 05, 2006, 13:30 EST

RE: Find a doctor

I have the samer sensation. Sotalol as a beta-blocker will reduce the output of your heart. Beta-blockers are contraindicated for vagally mediated atrial fibrillation. I only take beta-blockers to get out of afib and it helps me together with Cialis.

From: Gunnar Kling, Sweden

[Reply to Message] [Add New Message] [Posting of Apr 05, 2006, 13:41 EST

Re:Sleeping and A-Fib

I sometimes get afib in the evnings, after a meal or in the sleep in conjunction with low heart rate and rising bp. At rest my pulse is between 48-57 and when I get the afib the bp at the same time is rising to about 180/90. During daytime or when I am not resting my bp is 125-155/65-77. For bp control I take 40 mg Zestril, 160 mg Diovan and 10 mg Amlodipin. I am 60 yers and very fit. Three years ago I tested Cialis ( same function as Viagra but 36 hours of duration) and found out that I could not play tennis after taking a pill. After warm up it was impossible to continue due to fainting of low bp. I remembered this when I later developed frequent incidences of afib and found that I can avoid afib if I took a pill when ectopic beats set in prior to afib. If I wake up in the morning (on an empty tommy) with ectopic beats it will take almost excatly 14 minutes until the ectopic beats will stop. In the same situation in the late afternoon or in the evening i might take 30 minutes but then I immdiately take a dose of Nitrolingul to compensate for the delayed response of the Cialis pill. However the afib can set on without ectopic beats and in the sleep. Then my cure is to take 75 mg of metaprolol or 50 mg of metaprolol and 40 mg of Sotalol. This will reult of to 100% success rate in stopping the afib in 60 to 10 hours. When I start to have ectopic beats my pulse rate is under 55 and the bp is 180-200/90-95. The diastolic pressure seems to be more important if I should go into afib or not. Before I found out my method i had 5 cardioconversions after 24 to 40 hours if afib. Taking a pill of Cialis every 3rd day will completly eliminate my afib problems but it is too expensive for me to do permanently, so I tend to taka the pill periodically. When I am under the influence of Cialis my bp varies between 120-150/52-70 and pulse rarte 48-70 over 24 hours (Holter monitoring). So even if the pulse slows down during rest or sleep, the bp stays low or wll get lower. It seems as I must take both the beta-blocker and Cialis to stop the fibrillation. The beta blocke will reduce the systolic pressure from 160 to 120 but will not get the diastolic pressure under 90 which Cilais will do. Also I have found it extremly important to take the betablocker immiately as it removes the damaging effect of som extra hard beats thet hurt. If I take the betablocker I am unaffected of the afib eposide othewise I will need 3 to 5 days to get back to full heart capacity. Taking a beta-blocker will increase the afib eposides to every evening and taking a beta-blocker during ectopic beats or bigemi is terrible and will definetely lead to afib. It is als woth noting that the overall bp is not affected by Cialis. It is just under workload it has any effect. I understand how the PDE-5 blockers work and can only draw the conclusion that I have a problem with NO production in the endothelian layer in the pulmonary arteries or that PDE-5 is more prevalent in the body than what current medical knowledge shows. I live in Sweden where health care i socialised and also medical drugs are heavily subsidized for their medical intention. Drugs for erectile dysfuntion are however not subsidized. PDE-5 blockers are however yet not approved for pulmonary hypertension in Sweden. For that reason my doctors refuse to listen to or discuss any effect of Cialis on hypertension. If you wnat to test my cure check yout bp and ne sure that it do not get dangerously low when you have afib (under 100/50). If so you should not try this cure. Finally, have you heard of anyone having similar experiences of Cilais as I have?

From: Gunnar Kling, Sweden

[Reply to Message] [Add New Message] [Posting of Apr 06, 2006, 17:12 EST

RE:

Hi check out this website. www.afibbers.net Go to the current bulletin board and you can read and post messages. Very informative. Good luck and try to stay positive. I'm looking into having the ablation done.

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[Reply to Message] [Add New Message] [Posting of Apr 10, 2006, 09:33 EST

RE: pain in legs, joints

Can anyone tell me if pain in ankles/joints is affiliated with chronic Afib? When my husband was in rhythm pain seemed to be less, now that he is out again, pain seems to be worse. Thanks

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From: Dobrinya, United Kingdom

[Reply to Message] [Add New Message] [Posting of Apr 13, 2006, 02:35 EST

A-Fib-Accute Anxiety

I first noticed that my heart was what I would call just "skipping". My PCP discovered it and sent me to a Cardiologist. He said there is nothing wrong with your heart,but yes there was. I have had constant A-Fib now for about five days. It will go away and come back. I started out on 80mg of Sotolow and that was worthless, no change. Went to 180 and that seemed to be better. But now I know that I am in A-Fib at this moment, and I think it will go away when I lie down but I doubt that. There is not anyway I can sleep with this condition. Oblasion has been mentioned but my Doctor's husband has had two without results. The first real bad experience I had I was home alone and my heart was beating very fast at 178BPM. I was over 50 miles from the hospital that I wanted to go too. They called in and the ER told the EMT's to get me to the nearest. They got me stable, but my Bp was 100/50. The next morning I went to see my Dr. and he said after he examined me that I can't let you go home. Your Bp is 90/44..He called an ambulance and after the Iv, he checked my Bp and it was now 88/40..He told the lady driving to "hurry". I was in the ER for about five hours and they got me stable once more. I wanted to be admitted. I had about four Cardiologist around me plus they were on the phone with my Cardiologist. They sent me home. What can they do when they say you are alright.That is when I went on a 30 day monitor that I had to phone and let them record my heart on tape when I had an episode. Never went over four days without A-Fib.Dr's want believe me but after I eat is when most of mine starts. I have had it so bad that I would take off running and "DARE" it to blow out my chest. Did that help? No. I did make another trip to the ER by ambulance, three total within in 5 days. Cost over $4000.00. But I will not have an oblasion, as I know I want come out of it..Thanks for listening...Robert

From: Robert Wright, AL

[Reply to Message] [Add New Message] [Posting of Apr 13, 2006, 09:08 EST

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From: U9dVPeZ8JJ, Pakistan

[Reply to Message] [Add New Message] [Posting of Apr 13, 2006, 14:21 EST

RE: My great recovery!

I had the MAZE procedure done on December 2, 2005, as well as having my mitral valve and tricuspid valve repaired. Following surgery, I wondered if I could resume my noraml high-energy life. It is now April 13, 2006, and last night I rode my bicycle ten miles, and felt WONDERFUL ! ! No more terrible pounding in my chest, no more fatigue and shortness of breath. This is a miracle, indeed. I am so grateful for the maze procedure, and thank God every day for this operation. My best wishes to anyone having this procdure.

From: Rosalie, MO

[Reply to Message] [Add New Message] [Posting of Apr 13, 2006, 14:22 EST

RE: My great recovery!

From: Rosalie, MO

[Reply to Message] [Add New Message] [Posting of Apr 13, 2006, 14:25 EST

NEW: My successful procdure.

I had the MAZE procdure done on December 2, 2005. I also had two valve repairs. This is April 13, 2006. Yesterday I rode my bicycle ten miles and felt wonderful! I feel like I have a new heart. Best wishes to anyone having the maze.

From: Rosalie, MO

[Reply to Message] [Add New Message] [Posting of Apr 16, 2006, 16:58 EST

Chronic A-Fib:

I am in constant a-fib and have been in for almost 2 years now. I would go in and out in the past had have had 6 cardoversions. This all started when I turned 60 and now I am 70 years old. I have an ablation and a pacemaker. My adlation is not total but I would have to go to the hospital if my pacemaker stoped and get it fixed. The pacemaker has been perfect. I got it in May of 2002. I fliped out for several months after the pacemaker, but come to terms with it. I don't do very well with drugs. I want my life back and wonder if anyone has something like this and what I can to to get back in regular rythum. Thanks, Virginia

From: Virginia Perrin, NV

[Reply to Message] [Add New Message] [Posting of Apr 16, 2006, 19:39 EST

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From: n0ZOonQZs2, Grenada

[Reply to Message] [Add New Message] [Posting of Apr 18, 2006, 15:36 EST

RE: A-Fib

Having developed A-Fib in connection with pulmonary edema in 2000, I have been prescribed two medications to keep my heart rate low: Ethmazine, which lost its effect after about three years, and now Amiodarone which seems to work to keep the heart rate in slow, steady rhythm. However, I feel constant fatigue, almost certain that it's the result of the medication, plus my cardiologist has suggested that I wear a straw hat and a good sun screen when in the hot sun, to avoid discoloration of the skin. I would appreciate input from anyone who has taken this medication, particularly those who've experienced side effects from it.

From: Nick Garefalos, TX

[Reply to Message] [Add New Message] [Posting of Apr 18, 2006, 15:36 EST

RE: A-Fib

From: Nick Garefalos, TX

[Reply to Message] [Add New Message] [Posting of Apr 18, 2006, 23:10 EST

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From: Olga, United Kingdom

[Reply to Message] [Add New Message] [Posting of Apr 21, 2006, 00:21 EST

NEW: a fib and back

Was diagnosed with afib back in October 05.I was wondering if anyone has back pain in the middle of spine and I can tell when it's going to hit as my back pain feels like there is a burning feeling. Doctor's don't understand why am getting the back pain along with it, but i feel it's connected. does anyone have or know about this problem?

From: Darrell, British Columbia

[Reply to Message] [Add New Message] [Posting of Apr 21, 2006, 00:21 EST

NEW: a fib and back

From: Darrell, British Columbia

[Reply to Message] [Add New Message] [Posting of Apr 21, 2006, 00:23 EST

afib and back pain

From: Darrell, British Columbia

[Reply to Message] [Add New Message] [Posting of Apr 21, 2006, 12:55 EST

RE: New

Steven, Hang in there man! Do you think you might be a candidate for the Maze procedure? Paul

From: Paul, MO

[Reply to Message] [Add New Message] [Posting of Apr 21, 2006, 13:03 EST

RE: My great recovery!

Hi, I'm glad that you're maze went so well. Can you tell me where you had this done and who the doctor was? Thanks, Paul

From: Paul, MO

[Reply to Message] [Add New Message] [Posting of Apr 21, 2006, 21:04 EST

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From: Dmitry, United Kingdom

[Reply to Message] [Add New Message] [Posting of Apr 21, 2006, 23:47 EST

RE: symptoms of AF

If you are looking for ammo to substantiate your symptoms of AF, tell your cardiologist to check the guidelines for treatment of AF put out by the American College of Cardiology, Section VI B-Clinical Manifestations of Atrial Fibrillation. Also, another way to prove to him that you know is to ask for an event recorder. This is a monitor that you wear for 1 month. When you feel your symptoms, you push a button on the recorder and it records your heart rhythm. This will tell the Dr. what your rhythm is doing when you feel the symptoms. Hope this helps.

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From: Sara, United Kingdom

[Reply to Message] [Add New Message] [Posting of Apr 23, 2006, 02:44 EST

Uteral Ablation, Any advice appreciated

Any of advice concerning this procedure as in personal experience would be so much appreciated.. After having an Ectopic in my late 20s and then tubal micro surgery in my 30s I now find myself in the unfortunate situation where I need to have a hysterectomy but due to all the scare tissue problems I have I cannot... My Specialist as said that the only procedure he will preform is a Ablation to try and help with my erratic periods and also pain and heaviness... After he gave me all the relevant information and explained all the things that can go wrong I am terrified and find myself 12 months down the track still thinking about it and my situation is getting somewhat worse.. If anyone has had this done could you please let me know how it turned out for you?.. I really need to speak to some people that have first hand experienced this procedure as on paper it appears rather scary with all the things that can go wrong.... Thankyou for your time, Chelsea

From: Chelsea, Australia

[Reply to Message] [Add New Message] [Posting of Apr 27, 2006, 11:36 EST

NEW: atrial fib and artificial heart valve

I was just wondering about different types of treatments for people with afib whom have an artificial heart valve. I heard that if you have one that don't do ablation. Can you explain this to me why it's not a n option. Thanks

From: sandra shields, KS

[Reply to Message] [Add New Message] [Posting of Apr 28, 2006, 18:32 EST

Congratulations Rosalie on your Maze

Hi Rosalie Glad that you had the maze and are doing so well. Did Dr. Damiano at Barnes do your surgery. I know he is a good surgeon and does a lot of maze procedures. I met him in St. Louis last year at the Maze Alumni Reunion, and information sessions. Dr. Cox that developed the maze was the main speaker. We all had a wonderful time. I had my maze done in Peoria Illinois back in 1998 and have been AF and medication free ever since. If your now already a member, I would like it, if you would join my web site and help inform others that are looking for information. Dr. Damiano is also a member there, but doesn't post much, but will help me answer questions for people. Also Marci Bailey from Dr. Damiano's office is also a member. If you are interested, the address is http://health.groups.yahoo.com/group/A-fibcures/ Best wishes Jack

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[Reply to Message] [Add New Message] [Posting of Apr 30, 2006, 15:42 EST

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