Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 Hello and welcome. What would you like us to call you? Jeanne in WI Age 38 Open RNY 05/21/2002 314/ 283.5 /150-175 5' 8 " djgraves@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 > Hello, > > I just joined this group because my older sister has just been > diagnosed with this problem and I want to know how I can help her. > > She does not have a computer so she can't go online. > > I was wondering if there was information that I can mail to her or if > you have people that will call eachother, etc. if they don't have > email. > > I want to help her anyway I can to deal with this problem. > > Welcome, ! I've joined the group lately, too. Found some helpful sites online, where there's info you could print out for your sister. One is www.affacts.org (Atrial Fibrillation Foundation)another is www.heartcenteronline.com. For info about specific drugs, try www.drugdigest.org. Hope this helps--good luck! Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 Good Morning : A very warm welcome to you and your sister. The Afib diagnosis can be a frightening one. I was told I had Afib over two years ago, and it was an absolutely awful experience. But, Afib is not life threatening, and once she finds a good doctor, preferably an Electrophysiologist, the proper medication, and a good attitude, she will be OK. Its obvious she has a good supporting family, and this is wonderful. I live in Durham, North Carolina, and a couple of years ago, I found another member who lived in my area, and she has since become my *Afib Buddy*. We even see one another socially now....she is delightful. Where does your sister live? We just might hook her up with an Afib Buddy in her area. In the meantime, you are more than welcome to post messages for your sister. We encourage family members and friends of Afibbers to join our group. Its nice to have you here, and I hope you can find some peace for her. BTW, what is her name? How old is she? What meds is she on? Ellen (NSR on Dofetilide) ******************** --- In AFIBsupport , " nc_jewelcool <machoja@h...> " (snip) I just joined this group because my older sister has just been diagnosed with this problem and I want to know how I can help her. She does not have a computer so she can't go online. (snip) do you have people that will call each other, etc. if they don't have > email. (snip) ********************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 > > Hello, > > > > I just joined this group because my older sister has just been > > diagnosed with this problem and I want to know how I can help her. > > > > She does not have a computer so she can't go online. > > > > I was wondering if there was information that I can mail to her or > if > > you have people that will call eachother, etc. if they don't have > > email. > > > > I want to help her anyway I can to deal with this problem. > > Thanks for the helpful websites! > > > Welcome, ! > I've joined the group lately, too. Found some helpful sites online, > where there's info you could print out for your sister. One is > www.affacts.org (Atrial Fibrillation Foundation)another is > www.heartcenteronline.com. For info about specific drugs, try > www.drugdigest.org. Hope this helps--good luck! > Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 > > >I just joined this group because my older sister has just been >diagnosed with this problem and I want to know how I can help her. > >She does not have a computer so she can't go online. > >I was wondering if there was information that I can mail to her or if >you have people that will call eachother, etc. if they don't have >email. > Dear , If you give me her address, I'd be happy to mail her a hard copy of my Web site http://www.a-fib.com. I'd be happy to call also. A-FibFriendSteve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2003 Report Share Posted January 26, 2003 Marcelle Thank you for responding. I almost missed your message because since I signed up w/the afib group I'm getting all the postings as e-mail and am getting confused. I m reading the postings and then finding the same postings are on my e-mail .. Oh well. On to your message, I 'm sorry to hear you are having such a horrible time. Do you think you may have other problems? I 'm having a lot of joint & muscle pain but I don't know if it's related to the afib. My doc just says it's arthritis and to take tylenol 3 x's a day. Then he gave me tylenol w/codene to take at night but I have such a hard time getting up after taking it I can only take it when I have the next day off. I'm suprised you went into chronic afib w/your first major episode. That must have been a shock. Do you think it's the meds that make you feel so tired and bad? I've had e-mails from others in the group that say they feel just fine and go about their lives the same as always.Did you Doc put you on disability? I'm so tired most days I don't know how much longer I can do this. I' workd 25 yrs w/ one company where my job was always sitting down and on the phones. But a couple of years ago I started w/an Art & framing company and am on my feet 9 1/2 hours a day. no break and only occassionly do I take a lunch. I feel I'm too old to start another career....or I'm just way too afraid to even look w/my age and health. I know I should feel good reading about others who are doing so well w/ afib but when you're feeling crummy it just makes you feel really lame like you have the wrong attitude or something. Well this is long so I'll stop now..hope you have some good days and even better than good days. Donna (wilograce) in Sacramento CA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2003 Report Share Posted January 27, 2003 Hello Wilograce, I see you live in Sacramento. I lived in Woodland for a few years. I attended UC FYI, the Cleveland Clinic's world famous heart Doctor, Doctor Natale. Also has a practice at Marin General Hospital, in Marin County. In Greenbrea or San . If you ever want to explore other options. He's the best in the AF business. Rich O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2003 Report Share Posted January 27, 2003 I'm suprised you went into chronic afib w/your first major episode. That > must have > been a shock. > Do you think it's the meds that make you feel so tired and bad? Donna (wilograce) in Sacramento CA. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 > > >I'm wondering if anyone can talk about quality of life if you >are permanently in afib. I've had 4 episodes of af over the >last 3 years that have sent me to ER. But I have been having >many minor episodes in the past few months that stop on their >own. My doctor says I'm in the next stage and its just a matter >of time before I will be permanently in afib.So I'm wondering >about work,lifestyle etc..My doctor said he will put me on >blood thinners and something that will slow my heartbeat. I >asked him about work because I work in an Art & frame shop and >am constantly working w/glass and razor blades and cut myself >quite often..He said I should find a differnt job. Also I'm so >tired all the time now I can't imagine how it will be when I'm >in perm afib. > Dear Wilograce, Your doctor is probably right about you heading toward permanent A-Fib. " A-Fib begets A-Fib. " Your heart has a tendency to " remodel " itself physically and electronically when you're in A-Fib. But I'm surprised you haven't been on blood thinners before this. People in A-Fib have a significant risk of stroke, because your blood isn't being pumped out properly. It has a tendency to pool and clot. Has your doctor discussed with you the use of " antiarrhythmic " medications? These work on stopping the A-Fib, rather than just slowing down your heart rate. However, they often have side effects which you have to watch out for. Some people on this site have had good luck with dofetilide (brand name Tikosyn) and flecainide (Tambocor). You should also ask your doctor about the procedure " Pulmonary Vein Ablation. " It is a low risk procedure with a high rate of success in curing A-Fib permanently. I had mine done about five years ago and haven't had a symptom since. Good luck. We're praying for you and are there for you. A-FibFriendSteve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 Hi Lin,wellcome to this site. I am in the UK so some of the terms I use may differ from you .The first thing is that you need to read up on your condition, this site google is a good start. Also there is a site www.cardima.com this a site that has a method of treating. I dont want to comment on this site and there methods but they have a very good explanation on what is going wrong with you heart, Next you need to find out if you have any underlying heart defects that can cause AF.ie Vein blockage valve damage this is done via a ekco cardiogram and angiogram. Next you thyroid levels should be check and that your TSH levels are ok. I suspect that this will be ok then your be diagnosed with Lone AF no underlying cause. Are you in chronic AF or paroxysmal AF. If your in chronic AF they might want to cardivert you but that may work but they need to keep you in NSR. That your going to need drugs and this is going to be where you have to find one that worked for you. Keep off Coffee and tea and Chocolate. Best regards C Uk > new to group > > Hi fellow AFs, I'm a 60 year old gal who had to stop exercising - > something I've enjoyed all my life - because I had so much pain in my > back and legs afterward. I blamed my severe spinal condition. But > after I found out I'm in atrial fib, I realized that my condition had > deteriorated to the point of " exercise intolerance " , one of the signs > of decompensation. My doctor put me on Lopressor and Coumadin. I took > the Lopressor for 5 days and had such horrible headaches and got so > depressed that I had to come off the med. However, I did notice that > I had become accoustomed to breathing against great odds, that is, it > was much easier to breath and move around if my head hadn't been > pounding from the beta-blocker. Alot of you are talking about > ablation. Is anyone else on a beta-blocker? > > If I sound like a medical person, I am an R.N. But it doesn't make > any difference knowing terminology or disease process. The heart > disease crept up on me when I was thinking it was something else. I > feel frightened and not sure where the doctors are going. The atrial > fib was discovered on a preop EKG. I was going in for repair of a 3- > level cervical fusion. The surgery was postposed until this AF is > treated. But living in L.A. makes getting care difficult. There are > so many patients lined up, I couldn't even get an appointment with > the cardiophysiologist until June 12th, the date my surgery was > postponed too! Oh well, things are very different looking at health > care from the patient's vantage point. I used to take care of post > cardiac patients. They were a very anxious lot, just like I feel now. > > I was very glad to find this site on the internet and would welcome > responses from any fellow sufferers. > > Thanks, > Lin > > > > > Web Page - http://groups.yahoo.com/group/AFIBsupport > FAQ - http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm > For more information: http://www.dialsolutions.com/af > Unsubscribe: AFIBsupport-unsubscribe > List owner: AFIBsupport-owner > For help on how to use the group, including how to drive it via email, > send a blank email to AFIBsupport-help > > Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 Hi, Lyn, Have you seen a regular cardiologist and had an echo and treadmill test? You only mention a cardiophysiologist, and I am not sure what that is. I know afib is scary, we all (well, almost all) freak until we get more used to it. But, as a nurse, you know it doesn't mean your heart is going to stop or anythign like that. Take a look at www.affacts.org for more info about treatments, there is a lot of very helpful stuff out there. A lot of us are on beta blockers, me included. I am very glad for mine since it suppresses pacs and pvcs, but I hate the shortness of breath and lethargy it causes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 In a message dated 5/7/2003 5:51:54 AM Central Daylight Time, docbayley@... writes: > Is anyone else on a beta-blocker? > > Lots of us are on a variey of beta blockers I think. I too couldn't take Lopressor and then I was put on atenolol which has worked just fine. Perhaps your doctor will work with you until you find something you can live with. Good luck! Brenta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 In a message dated 5/7/2003 12:06:56 PM Pacific Daylight Time, B6426@... writes: << I too couldn't take Lopressor and then I was put on atenolol which has worked just fine. Perhaps your doctor will work with you until you find something you can live with. >> I had the same experience. When I started on Lopressor, I had terrific problems with asthma and just couldn't tolerate it. I switched to Atenolol and even at a high dose of 150 m.g. per day, I have had few problems with asthma, despite the fact that Atenolol is also supposed to exacerbate asthma. I guess beta blockers are not created equal. I love my Atenolol, which I have taken for 14 years of my 20 year afib career, starting with a dose of 25 m.g. and moving up about four years ago. It did cause fatigue and shortness of breath at first and each time my dose was increased, but I can see no side effects from it now. I work about 12 hour days and have numerous other activities, which would probably cause some fatigue even without Atenolol, but I have plenty of energy for all, especially since I have been in sinus for all but 68 hours and 15 minutes of the past year. in sinus in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Thanks . I've noticed that the tea I love to much morning and afternoon doesn't agree with me anymore. I've had the echo but not the angio. The echo showed mitral valve prolapse which I understand can be a sign of heart failure. EKG showed left anterior fascicular block, so electrical system isn't working right either. Were you able to isolate the cause of your AF? Have you heard anything about ascorbate, Vit. C? new to group > > Hi fellow AFs, I'm a 60 year old gal who had to stop exercising - > something I've enjoyed all my life - because I had so much pain in my > back and legs afterward. I blamed my severe spinal condition. But > after I found out I'm in atrial fib, I realized that my condition had > deteriorated to the point of " exercise intolerance " , one of the signs > of decompensation. My doctor put me on Lopressor and Coumadin. I took > the Lopressor for 5 days and had such horrible headaches and got so > depressed that I had to come off the med. However, I did notice that > I had become accoustomed to breathing against great odds, that is, it > was much easier to breath and move around if my head hadn't been > pounding from the beta-blocker. Alot of you are talking about > ablation. Is anyone else on a beta-blocker? > > If I sound like a medical person, I am an R.N. But it doesn't make > any difference knowing terminology or disease process. The heart > disease crept up on me when I was thinking it was something else. I > feel frightened and not sure where the doctors are going. The atrial > fib was discovered on a preop EKG. I was going in for repair of a 3- > level cervical fusion. The surgery was postposed until this AF is > treated. But living in L.A. makes getting care difficult. There are > so many patients lined up, I couldn't even get an appointment with > the cardiophysiologist until June 12th, the date my surgery was > postponed too! Oh well, things are very different looking at health > care from the patient's vantage point. I used to take care of post > cardiac patients. They were a very anxious lot, just like I feel now. > > I was very glad to find this site on the internet and would welcome > responses from any fellow sufferers. > > Thanks, > Lin > > > > > Web Page - http://groups.yahoo.com/group/AFIBsupport > FAQ - http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm > For more information: http://www.dialsolutions.com/af > Unsubscribe: AFIBsupport-unsubscribe > List owner: AFIBsupport-owner > For help on how to use the group, including how to drive it via email, > send a blank email to AFIBsupport-help > > Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2003 Report Share Posted May 26, 2003 Good Morning Ann: What an interesting post~~~~~I'm leaving the message in its entirety, with not one *snip*! Thank you so much for your contribution to our group; and we welcome you! Keep in touch. Ellen ********************** ----- Original Message ----- > Hello Everyone, thanks for all the great information. > > This is my first post to this group, even though I have been reading everyday for sometime now. > I had my first A-Fib episode in February of 2001. Had never heard of AF and had no idea what was happening. I went to the hospital and was converted with IV Corvert, stayed over night and was released with only Methoprolol. > > My second Af was 5/19/01. I was converted with IV Amiodaron, Diltiazem, Digoxin, and heparin. After a three day stay, I was released with 100 mg. Amiodarone, Lanoxin and aspirin. As soon as I studied up on the Amiodarone I was terrified of it. Every time I saw my cardiologist, I would ask him about the Amiodarone. Everytime, he would say it was really a good medicine and we would keep close watch on the side effects. > > After finding the other A-Fib group, I learned that most people did not rush off to the ER and waited and sometime converted at home. In June of 2001, another A-Fib. I waited and after a few hours I converted without going to the hospital. > > In 2002, I only had 3 A-Fibs (April, October, and December). Each time I converted at home. In Sept. of 2002, I was taken off the lanoxin. > > So far, 2003 has not been a good year for me regarding A-Fib. I've had one in January, two in March, Three in April and 6 in May. On April 18 I was in A-Fib for over 12 hours and just could not put it off any longer. I was so nervous, I could hardly remember my name. It seemed the longer I waited the faster and more out of rhythm I became. I finally went to the hospital. This time, I was converted with IV Amiodarone and finally started on coumadin. I spent 6 days in the hospital. > > I have always insisted that blood work, x-ray, etc., be done every three to four months to keep watch on side effects from Amiodarone. When I went into the hospital blood work was done and everything was ok. However after the 5th day, same test were done again and showed that I had an overactive thyroid! I kept asking if the Amiodarone had caused this. I was assured it hadn't and was released on 200 mg. of Amiodarone. > > I was so upset because I knew the IV amiodaron had just soaked my system and caused the thyroid problem. I talked with my GP and ask him for a referral to see an EP in another town. He made that referral for me. > > About 4 days after I was discharged (4/18), another A-Fib. which lasted more than 10 hours. I skipped our local hospital and my husband drove me to Lexington Central Baptist Hospital (about 45 miles from home). I was seen by a new cardiologist who works in the same office as the EP I had been referred to - and waiting on an appt. from him. I was converted with Cardizem. After listening to my history, the doctor immediately took me off the amiodarone. He also agreed with me that the Amiodarone had caused the over active thyroid. I was started on Cardizem 180 mg a day, and told to keep my appt. with EP. > > 4/30/03 another conversion in the ER at Central Baptist. More episodes 5/2--5/6--5/9--5/12--5/14--and 5/20. On the 21st, I finally got to meet with my new EP doctor. He said he would never start anyone on Amiodarone unless everything else failed and if the person was much older than I. (I am 57). He said the amiodarone did cause my thyroid to become over active. He said it takes about 8 weeks to get the amiodarone out of my system. He can not start me on any other medication until June 18th, (after most of the amiodarone is out of my system). Also, I started out on 1 pill a day for the thyroid, after two weeks, raised to two, after two more weeks, raised to three. He told me the medication for my thyroid would probably not do much good until the amiodarone was gone. He said I would probably continue to have frequent A-Fibs until I was straighten out on different medication, etc. He advised me to wait around and try to see if I converted at home -- then when it got more than I could stand, come to ER to be converted. On June 18th, I have an appointment to see him again. He plans to do some additional test and start me on Tambocor. I would really love to hear from the people that are on this medication. What luck have you had with it, what side effects, etc.. > > I know everyone's body is different, but I knew from the very start that amiodarone was not a medication that I wanted in my body. I am just so angry at myself for not doing something about it two years ago. The doctor here had me believing that I had to run to ER and be converted as soon as the AF started. That's why I tried to stick with a local doctor. When I discussed this with the EP, he told me I was very much in danger of having a stroke because I was not on coumadin. Now that I am taking coumadin, (since 4/18/03), he said I should now be protected from strokes. > > If any of you have a gut feeling that something is not right for you, please do something about it immediately. Don't wait around like I did. I have sure learned my lesson the hard way. > > I can always tell the second I go into A-Fib, and also tell when I convert. I have really, really hard, fast, and out of rhythm heart beats. (I'm sure you all know what I am talking about). > > One more thing, since reading a few of the post about memory loss on amiodarone, it has become clear as to why I was forgetting to turn the stove off, forgetting what I went from one room to the other for, etc..... Wow - Thank God I am finally getting this drug out of my body. Sorry for such a lengthy post but had to tell this to people who understand what I am talking about. Again, Thanks for Listening . Ann --- Kentucky *************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 > Hello Everyone, thanks for all the great information. > > This is my first post to this group, even though I have been reading everyday for sometime now. > I had my first A-Fib episode in February of 2001. Had never heard of AF and had no idea what was happening. I went to the hospital and was converted with IV Corvert, stayed over night and was released with .......................................snip.................Hello Hello Ann: I am so sorry that you are going through so much. May I suggest you read my post #l6522 dated 3/19/03 (although there is a typographical error in it, I wrote a hematocrit value instead of hemoglobin value in the last part of the post)...)Hemoglobin should be l4 for woman and l5 for men...and is the protocol for lowering incidence of blood clots. Hmt should be 42 for women and 45 for men....slightly below may even be better...since sometime during the period between phlebs it could go higher. (In the US Foods and beverages are fortified with iron and or ascorbic acid (Vitamin C)these increase and also(vit. " C " ) enhance iron absorption and this may cause the blood to thicken ....result is that there is a greater propensity for blood clots or thrombi to occur. There might be some information in the post that could be of value to you. It takes time to understand what I have written. I take Coumadin only and give periodic l50ml/mini phlebs...(blood donations) This helps to lower the ferritin, hemoglobin and hematocrit....when these are at normal or slightly below normal levels....which gives the heart a chance to heal. I have had only one episode of afib in 7 months,because of my ongoing perseverance, I have done almost two years of research on this topic and discussed it with experts as well as other listmembers. The benefits of blood letting to reduce certain blood values,is a topic of discussion on other lists such as the Blood Bank and the Hemochromatosis websites and lists. Several experts recommend being slightly anemic. I try to keep my hemoglobin and hematocrit at l3/39 (slightly anemic). So little is being done on this subject. I truely believe that keeping my hemoglobin at normal or slightly below normal levels is helping me and of course I take in as little milk as possible, and watch my Vitamin K intake. Regards, let us know how you are doing. Isabelle land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Thank you for letting me join this groupd my girlfriend told me about you folks and it sounded freat, I want to get back on the road to eating right, not just eating........and have a lot to read yet but hopeing I can get a lot out of the mssages already posted to help me get started. Thanks again and thank you for telling me about this group...... Quote Link to comment Share on other sites More sharing options...
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