The end of October I had a cardioversion that failed in less than a month. I met with my cardiologist two weeks ago and he confirmed what I thought that it failed. Actually I have atypical flutter it’s not my a fib as such. He wanted me to meet with the EP he works with so today was the day to do that.
The EP cut straight to the chase and told me more than anyone has since first being diagnosed two years ago. Atypical flutter is harder to map. He does not really want to do another ablation because of the scarring on my heart from my previous three surgeries. I had a cryo and RF ablation within six months of being diagnosed. This past April I had VOM as well as other things done I was sleeping not sure what was done lol. That failed miserably and from the end of April until the end of October I ran a heart rate in the 150s. Long story very ugly changed doctors thankfully. Four days later after meeting him I had a cardioversion and woke up with a heart rate of 82 and feeling wonderful. Unfortunately less than a month and the feeling was gone. My new EP wants to try a Medication on me called Dofetilide. It is supposed to be as good as amiodarone without all the bad side effects of it because I cannot take amiodarone. The downside to it is that I will be in the hospital several days while they start it. They will start with a cardioversion and put me on the medication and into the ICU for at least three days. They will take an EKG every two hours because of the possibility of a change in my heart rate that could be fatal. I will need to have at least five doses before they will consider sending me home. Yes this scares the heck out of me. If it works it should be wonderful and the doctor prefers it over doing another ablation on my scarred heart. If it does not work he will consider an ablation he said if I were 10 years older he would say no. He knows I need quality of life and do not have any right now. If an ablation does not work it looks as though the final choice if you call it that is a pacemaker. It will replace my heart beating my heart will no longer beat it will be ablated. My doctor is one of only three in the hospital that can do the things I need. Texas Heart Hospital is quite the place. Both of my doctors have a stunning background and did quite a bit of work in New York City at New York Methodist. I will get a second opinion if I feel I need it if I am told I need the pacemaker but I am hoping the medication works.
I know I have seeing other people mention scarring and being unable to have certain things done now. I did not expect it to happen so soon to me but the VOM was a very aggressive procedure what kills me is it did not help but since then is when I actually felt worse.
Anyway I just wanted to whine to people that understand. I have learned so much from all of you. He seemed surprised I knew about the blanking period. The only difference I heard from him was they consider it only a month. He said anything that happens during that month they do not consider things have failed because it’s the blanking period and your body is still sorting things out. Personally I think it takes longer than a month and I’ll bet all of you do as well. Again it amazes me how doctors are not all on the same page when it comes to a fib etc. I feel a little foggy or some thing right now I wasn’t expecting the things that he said to me today. I am glad he told me things and he knew that he could but I’m a little shellshocked which is unusual for me. Coming from law-enforcement I can pretty much deal with everything but we only get one heart and this ICU thing etc is definitely scary to me and shows how serious it could become. A month or so ago I was afraid I was going to die I really thought I was because my doctor I had abandoned me and I did not have my great new one yet. Now I realize again I could die just having them put this medication into me. Not too long ago we had a talk here about fear of dying. Yes I’m still afraid I hope it doesn’t hurt if it happens. Then again I could just stay out of the clear blue sky over some thing else. They say that today is a present it is a gift that we are given to appreciate while we have it because there is no promise about tomorrow.
I have a feeling I have some friends on here that know the feeling I have at the moment getting this news today. I thought I was just being wimpy because I am so exhausted and just feel so lousy all the time. I so appreciated those 3 1/2 weeks after the cardioversion if you can wash your dishes and laundry and feel good while you do it be grateful. I never thought I would appreciate being able to do those things. How many more of you feel like I do? I don’t think I ever appreciated quality of life or knew what it really was until now.
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DawnTX
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I am so sorry to hear your latest news but first I need to address one thing - you’re not “whining” as you put it! You’ve been through a heck of a lot and still are going through it. In my view you’re displaying considerable fortitude, given the circumstances.
The main positive is that you seem to have found a good EP this time and not someone gung-ho who’s just going to leap in and try another ablation. What he told you was tough to hear undoubtedly and I, too, would be very scared about taking a drug that requires me being admitted to ICU to be monitored. Quite frankly, I think anyone who says they wouldn’t be is either lying or an idiot! However, the fact that you are going to be so closely monitored is a positive thing and if you heart did go into a dodgy arrhythmia they would be onto it straightaway. Your new doctor sounds very on the ball to me so, scared though I would undoubtedly be, if I were in your position I think I would go for it.
As for your comments about appreciating life and the day to day, it is amazing how much we do take for granted, isn’t it. We’re often so busy “doing” that we rarely step back and take a moment just to realise how precious life is and how incredibly lucky we are to have such a gift, tough though it is at times. As you say, none of us know how long we have and I was certainly as guilty as anyone of charging through my life thinking I was immortal until AF came along and reminded me that I’m not!
I wish you all the very best with your upcoming treatment and sincerely hope it works for you . TC x
thank you so much. I have only had a fib two years my first ablation was a cryo-did not last more than six months so then they did an RF and that was for a year and a half which was great I guess that’s when I took it for granted I was fixed. Yep I was just beginning to learn about a fib obviously. I am so grateful that I found this site and see all the variations of a fib etc. my Cardiologist is low-key however has had many high rank positions including now at the hospital so he is pretty amazing. My previous EP was somewhat of a star up on a pedestal to many doctors and highly written up etc. I think I have come to except that he may be a good doctor but he is mainly research and development not a doctor so to speak not with people and some people just aren’t meant to be interactive. Unfortunately because of that and the fact that some thing obviously failed I have had to find a new doctor and that was a good thing for many reasons including the fact of being so much closer to home Now it is 15 minutes instead of three hours although the hospital I will be in is an hour away but much simpler to get to. Trying to get into the medical centers is difficult at best just because of traffic in Houston.
my new EP is much younger than I expected lol isn’t everyone. I have been looking at his stats and he seems to also continue training yes I believe he is very much on the ball and I did like the fact he didn’t just want to do another ablation he cares about the damage in there. One of the first things he talked about was quality of life. I had never heard of this medication he gave me the plus and the minus of it and yes I am definitely going for it on the 20th they will do a cardioversion First and start the medication on me. It is a very small concentrated hospital and is part of a larger heart hospital here in East Texas. I’m not thrilled about being there possibly until Christmas but if it goes right it could be a merry Christmas because I will feel good and be able to wash the dishes lol. I use that for an example because it’s not one of my favorite things to do but when I discovered I cannot stand at the sink and wash a few because of the pain etc. suddenly I missed the ability to do it.
Hugs and thank you
I am still a little bit overwhelmed I have come to the conclusion I am a control freak and as we all know we cannot control a fib it controls us. I like being at home I’m not going to be happy about being there for a few days I hope they give me something to sleep. Thank You for your support
It certainly sounds like you’ve found a good EP, for sure. I did smile when you said he’s young😊 I was delighted when I found a young dentist who is good , I figure he’ll be around for a few years and I won’t have the faff of trying to find someone else for a good while!
I’m glad the hospital isn’t too far away and I’m sure the staff will take good care of you. I reckon those few days will pass a lot quicker than you think.
I, too, am a control freak but had no idea how much of a control freak I was until AF showed up and seriously messed with my head! I do hope the medication is successful for you and you soon get back to enjoying the pleasure of washing dishes 😊x
This must be so hard to come to terms with, and it really does sound scary to be in the ICU. Although it could well be a ‘just in case’ situation, as some people have reacted to the drug? Then they are on hand to sort out any dangerous reactions. When I started Flecainide, I read that they usually give it in hospital first, so when that didn’t happen I worried. Turns out it did nothing to me - though nothing good either really!
There are some in the group who have had a pacemaker, and it has made a huge difference. It always does sound a bit final, but if it gives back your quality of life then it can be a real win. I believe that CDreamer has had a lot of benefit without even having the AV node ablated. So, if it does come to it, don’t think of it as too final.
thank you for the uplifting message. When they put me on amiodarone they had me in the hospital for most of the day but unfortunately no one paid attention to the fact I was already covered with an itchy rash and it went downhill from there to four months of misery. because of the fact I was nsr they did not want to stop it. Interesting, yesterday I asked whether it was OK to get the flu shot. I almost got it a few weeks ago but they actually had run out. I believe in the flu vaccine my opinion. Anyway he said if I was nsr right now he would not want me to get it. Because I am not it’s OK to go get it so I did yesterday with no adverse reactions. One of the best I think I’ve gotten over the years. I think what it comes down to is that if I am NSR they do not want to take any chance of changing that. Neither do I. I am definitely going for it I have been assured by the doctor and his nurse/assistant that I will not get lonely there they are going to be on top of me during the procedure of testing the med and will do an EKG every two hours. Yes no doubt it is because some have had issues with it I’m hoping I am not one of them. All I keep hearing is with good hands I am in here in Texas so I will be grateful for that. Thank you again for the support all of you are what I need right now because you all understand with that says most people just don’t get it and they keep saying well hopefully they’ll fix you this time. It’s hard to explain there is no cure we can only hope things hold for us so we have some quality of life and happiness
I have been taking dofetilide for 4years without side effects or any breakthrough Arrythmias. I have extensive heart damage from previous MI and scarring and went into pulmonary edema when my afib started. I was initially cardioverted but only stayed in NSR a week. I returned to NSR while being loaded with dofetilide and have maintained it since. The biggest problem was boredom from 3 day hospital stay. My Ejection fraction went from 21 in afib to 40 in NSR and have not had any CHF or SOB since. I highly recommend a trial of this drug. Best, etheral
thank you for that uplifting message yes my iPad will be coming with me lol and thank heavens for TV. I will be going in on the 20th for the cardioversion and the drugs. Not the greatest of weeks to be doing it because it’s Christmas week. The good thing is when I get home if I’m lucky I will be like you and actually enjoy the holiday. I believe that is what my doctor is hoping to do with me. I just had a cardioversion the end of October I went from 158 heart rate to 82 when I woke up and for 3 1/2 weeks I felt amazing then just like that as you know I was back But I am told it is a typical flutter this time which is one of the reasons he just don’t want to ablate because it is so hard to map. If the meds do not work he will do one more ablation but yes just like with you the scarring makes him not want to do it. You just made me feel so much better about having this done thank you
Hi Dawn, I wish you all the best in a very scary situation. But I need to say ‘Pace and ablate’ is not as you describe it 😨 Your node that transmits signals from the atria to the ventricles (AV) is ablated so your atria can do fandango or dying swan dance if they like but the pacemaker keeps your ventricles beating steadily. So I wouldn’t be too upset at that thought myself and if I were you I would skip the dofetilide and go straight to the pacemaker deal but I’m not trying to give advice, it would just be my personal choice because I would want to get on with my life without any uncertainty. You have great courage and determination so I can see why you would try all options ❤️🩹
I understand why you would want to skip the step my doctor is trying to go a little bit at a time. Mani would just do another ablation he is not happy about the thought of doing one and is hoping the medicine will be enough. If I have problems with it I am going to speak up because I am done with not having life and I’m tired of just sitting around like a glob because other than that I feel so horrible. I got a taste of what it feels like to feel good and I want more now lol. It is really not up to me and I would prefer to do a baby step to be honest with you but I am going to be adamant not wasting more time if the medicine makes me feel as bad as the other did. I’m still a little confused about pacemakers because I thought they were for when you had a slow heart and it gave it a kickstart when it needed it. My heart is so fast they have trouble taking my blood pressure. The nurse was surprised when I thought yesterday‘s readings were good. I then explained I had spent almost six months in the 150s for heart rate so anything looks good and feels better. This doctor went right to the point which I prefer. He told me my heart cannot continue on the way that it is. He wants me in earlier but right now the hospital is booked up. It is small and specialized. Even with my last procedure I had a full staff just taking care of me hopefully I will see old friends now lol because they are out of that hospital and came to mine to work with my doctor. I am just amazed at how bad things can get within two years because I read so many of you on here that have dealt with it for so long. I don’t know if I will be home for Christmas they are going to try my major concern is my dog we have only been separated for one night but luckily my cousin will be here with him so he will not be anywhere different and he will be with someone he loves that loves him. Hopefully we can FaceTime
I used to have a neighbor who was an avid fellow runner and he was like 85 years old, (he lived across the street from me). I knew that Harold had heart problems but I never asked him any details. Anyway, one day he asked me to come over and help him set up a brand new treadmill in his garage. I asked what was wrong with your old one?
He said " Ever since I got my pacemaker 7 years ago, I've been running 5 miles per day and I just wore it out - replaced 3 belts and finally the motor quit...
Before his pacemaker Harold had afib and another arrhythmia. I'll have to say at that point I think his endurance was way better than mine @ 35 years old.
So Dawn - I just want you to know there is hope and also, as you can, see pacemakers can work out wonderfully.
Sounds like you're in really good hands - let us know how it goes, (hoping your meds give your energy and NSR back soon.)
wow what a great story lol he wore it out I love that. A close friend of Me told me yesterday that he golfs with several people who have a pacemaker and they have no issues so far I am hearing mainly good stories about them thank you for adding to it. I had the wrong view of a pacemaker I guess so I was confused as to why I would be getting one and from the way it was put to me I would be dependent just on that and it sounds scary to depend on some type of device but then again my own device has been letting me down meaning my heart. Thank you again yes I think I’m in good hands not only with my doctors but with all of my new friends here
That failed miserably and from the end of April until the end of October I ran a heart rate in the 150s.
Hi Dawn
Always read your posts which are informative. May I ask, were you on any medication to control your heart rate (Metoprolol, etc) ? Or was that 150 rate not continuous ?
Can relate to the three day hospital stay. My cardiologist has offered same before trying Sotalol. No yet decided as Metoprolol seems to be controlling hr at present.
Best to you in managing your health. Keep us posted.
Hi. I have had a fib for about two years plus now it took them a few months to fully diagnose it and I ended up having an implant of a loop recorder. Within two weeks they had the answers. I was put on Xarelto and possibly metropolol succrate. They did not waste any time once they had it diagnosed and did a cryoablation within a week. It was at that time they put me on amiodarone in the hospital then sent me home that night. One of the worst things I have ever had in my body I was so sick for four months but because I was NSR They did not want to take me off of it. Finally I stopped it and then of course a fib came back. I was having both a fib and flutter from the beginning. I was put on multaq and continued with a metropolol for a while then taken off of the metropolol. Just before Christmas two years ago I had an RF ablation which lasted a year and a half just about and I remained on Multaq and metropolol. My cardiologist put me back on the metropolol when I mentioned the difference I felt when I was off of it and it wasn’t for the better.
then things got confusing because I moved last October to Texas and I ended up in a period without a doctor. It took that long to get an appointment because I was all over the place then. I went to Houston Methodist Hospital with a very well-known surgeon who is the pioneer of the vein of Marshall. According to him at six weeks after, my flutter was gone but all I can say is I never felt well and ended up getting ignored. I was left on metropolol not Multaq. Then I was abandoned which is why you now see I have a new doctor again. Well-known and famous doesn’t mean they are good with people FYI. Yes the 150 range was for almost 6 months because I was so sick and could not figure out what to do I should’ve left him sooner but being new here I did not know which way to go. If it were not for the mail carrier here I might still be suffering We were talking one day outside the house long story short her parents use my new cardiologist and I decided to give a call. The hospital did not have a good reputation but it is 15 minutes from my house and I had just been there because my cousin was in an accident. I found the Hospital impressive that’s why I took a chance. Houston Methodist is number one in Texas and in the top group for the United States again that’s not the only important thing about them. Sometimes places get too big and forget about us The hospital itself I can’t say enough good about FYI amazing staff no matter where you were in there I don’t know how they do it but they were incredible. I took a chance on my local hospital and I am so glad I did because I found another amazing group of people. My cardiologist is much more than he appears on the surface so I was blessed to find him. Now the same has happened with my EP. They work closely together and now I know why.
so yes they appear to be doing all the right stuff from day one but what I’m finding is not everybody agrees not the EPs not the cardiologists. The hospital that I had been going to in Florida is also highly rated unknown to many people that it is becoming a top stroke and heart facility. I knew that from day one and I was lucky enough to live across the street from it.
I hope I am not too confusing here I am still overwhelmed with things and just lately in the past hour I am starting to feel halfway decent it’s been a rough day physically. I am on my metropolol times a day now. That third dose seems to be making a difference even though I am on the XR now it still seems to lose some thing when it comes to mid day. If I didn’t say it what I have now is a typical flutter not just a fib and from what my EP said a typical flutter is not the same as regular a fib flutter that came from him not my interpretation of it like some that I said lol. According to him it’s one of the reasons he is hesitant to ablaze besides all the scarring. Atypical is hard to map and if you can’t map it right how are you going to stop it? This is why he’s going for the Medication First he seems to feel that without good mapping and ablation is just a waste. He was very good about explaining how the electrical circuits managed to get through so much no matter what you do. That’s the first I have heard from a doctor where it makes sense why we keep having problems. I try to compare myself with plumbing or electrical in the house lol then you can see how a new problem can pop up.
atypical flutter yep it sounds like me lol I don’t do anything the easy way never did. I worked law enforcement when my mother wanted me to be a secretary lol
FYI I was reading more on my new doctor the EP because he is very young I wanted to see more about him. Young can be good because they still have the hunger for things and learning is constant as well as new things coming out. I had another EP in mind and only met with this one out of respect from my cardiologist. He works closely and I could tell he really thinks highly of him. Well a little while ago I discovered that the one that I wanted is almost a clone of the one I have now. They are both medical directors of electrophysiology at their hospital. The hospital is part of the same group. Many many things in common so I feel as though I got what I wanted anyway. They both seem to be on the same page on many things. Another thing I really like is that both of them have an understanding of what was done to me in April in Houston. Vein of Marshall or VOM is only a few years old. It is done with alcohol instead of cryo- etc. it is done on the outside of the heart as well as inside and is an area that has until recently been ignored pretty much. There are readings on it that you can almost understand as a Layman FYI. To have a doctor now that understands this new procedure I feel is very important so they can look and see what went on and what might have gone wrong. Since I started writing to all of you today I feel much better both because of all you have said and the new information I discovered about my doctor.
I think I need to settle down a little bit I have 12 more days until I go. I was thinking they may very well have monitored mean not quite as tightly on the amiodarone and then needing an EKG and being an ICU is what his had me a bit crazy lol The rest of the crazy is just me and who I am lol. I can thank all of you enough for being here
This is a challenging time for you but you are doing SO well already in the way you're handling it. You are being open and facing your fears. You have an EP who didn't bullsh#t you and who has a plan. He also has a plan B if it doesn't work. There's even a plan C that might be doable. There are options. He's on your case. Others here will tell you their experience of pacemakers. And over the next few weeks hang onto this thought "They say that today is a present it is a gift that we are given to appreciate while we have it because there is no promise about tomorrow." This is true for all of us though we often choose to ignore it and spend our lives fearing the future. Take it step by step as you go through the days to come.
thank you I see we share the same attitude. I worked law enforcement and I found it does you know good to worry about what might be I never would’ve done my job and it may have cost me my life if I had that way of thinking. I’m afraid I can be more like the bull in the china shop lol. I always pictured myself like an old American western movie when they die and are up on the big boot hill with wooden signs and mine will say she didn’t die of boredom lol. I was married to a pilot and I just said the other day is a good pilot he didn’t just have plan ANB when he failed a flight report he had plans A through Z. My new EP is not thrilled about ablation because of my scarring I like the fact that he takes things into consideration because I feel that many just do a procedure because that’s how everyone does it. A friend last night said back in Boston they are doing pacemakers for a fib all the time. I don’t think that’s a good thing it may be the answer but I prefer less invasive now that being said if I am not lucky with the medication and it hits me like amiodarone did I am willing to go with a pacemaker. I am not getting any younger here and I don’t want to waste time feeling even worse than I do today. I mentioned to someone I realized I am more of a control freak than I thought lol and I think what worried me about throwing the medication in the ICU is the fear of not having any control over what this stuff does to me and depending on everyone else to keep me alive if something goes bad. But then I thought I could take a breath the wrong way and die you can’t keep worrying. I will be in the hospital where the staff for my cardioversion came from I’m hoping to see them I was in such good hands I have a feeling it’s the attitude of the hospital and they all adore my cardiologists that makes a big difference. There’s not much to think about between now and the 20th everything will remain the same until then except for my preop stuff the day before
It took me a while to develop that attitude but - as you say - without it one cannot live one's life. I hope all goes smoothly and you get to a place where you can feel comfortable about putting up your feet and enjoying life again! I just had my 2nd review post ablation today as it happens. Asked thr EP what to expect after 7 months in Sinus rhythm. "You can expect to mostly not have AF. You have a predisposition to it so nothing is guaranteed but should it be set off it should fleeting and manageable". I much prefer that he didn't say it'll be gone for ever.
I think we are smart enough to know it won’t just disappear but if it’s only a thump once in a while I will take that. I Me right now it’s atypical flutter nonstop. I am nauseous and I have trouble walking I have pain in my upper thighs and shin areas. I know it’s from this because I had it before and then it was gone after the cardioversion. I really hate the feeling of weakness where using my arms for simple things is exhausting. It seems ridiculous that I can feel this way this is not me it makes me angry to feel like an old lady because inside I am not. I know I am not alone feeling like this. I think a lot of this may be lack of circulation so here’s hoping for success next week. I’m also hoping to be home for Christmas this will be our first Christmas in the new house.
thank you so much I know you understand. I did notice that it is not in Europe or Australia yet I don’t know why either everyone has their rules I guess.
knowing what they must do to start me on it shows that there is quite an expense involved I would think. Minimum three days in the ICU. That will follow my cardioversion which of course normally you go home from. We are hoping this one keeps me in rhythm longer. I don’t know if I am making a mistake because I know how horrible some meds have made me feel but I have to give it a try as I feel worse by the day right now with my heart rate climbing. No matter what I do it will involve some type of continued medication which I am not happy about but it is what it is. My doctor is hoping this is for less invasive answer.
You are not "whining" . You are facing what must be a scary situation with great fortitude. I hope it goes well and the Dofelitide works for you without side effects. Use the time in the hospital for R&R- difficult I know as hospitals are busy places and people will be checking on you all the time. But you will be well looked after.
Thank you so much there really isn’t any advice anyone can give the choice has been made to go ahead with the med route. I am not ready to go with the pace maker yet. I will not be surprised if my doctor decides he does not want to ablate. He seems to think it’s going to be very difficult to map and to get it right. I am in Agreement because Houston Methodist is a world-class hospital and it appears now that they had trouble mapping with my VOM. My new doctor does not want more scarring and more damage to my heart than what is there if He does not feel he can truly get the area causing a problem in atypical flutter. Evidently that comes from the left not the right side leave it to me to have something not normal hello hell that should be in my middle name atypical. The support that people took the time to send me a message is what means so much to me thank you
WE all share your fears and anxiety. I fear dying, but not for me but for my loved ones. I say get right with God and hang on for what's left of the ride. God Bless.
Prayers for you and success for the upcoming efforts. You are 100% right all the doctors are different in how to treat. I found that shopping for the right EP was my fix. Unfortunately, for me it isn't in my local hospital system. So we take a 6 hour drive and hotel room for even a simple check up.
hi Bob yes for me to go to Houston is over three hours so I feel your pain. I actually found my new doctor only 15 minutes from where I live as well as the hospital. The main hospital is an hour away but not a big deal compared to go into Houston. I see winter has appeared. We had it show up for a week or two yesterday it was 80 again crazy weather but they say another cold front is coming and there’s a big storm coming from the west I’m afraid that you are about to get hit with. I was blessed with amazing doctors in FL. I have only been in Texas a year. I had quite the doctor recommended to me here in Houston and if you read about him you would be grateful to have him unfortunately his procedure did not work for me and even worse is that he belongs in a lab not with people. I am being harsh for a reason. I suffered for six months with a heart rate of in the 150s. Then I reminded myself it was up to me to do some thing so I found a doctor close to home and I am very happy that I found him and the hospital. Unfortunately big fancy hospitals and doctors aren’t always the answer. I met my new EP the other day who works closely with my new cardiologist. I like him I like his attitude I think it’s going to be good. I had another one I had shopped for that I wanted about an hour or so away. The funny thing is I did a comparison yesterday and came to realize both EP‘s are almost clones lol they are both medical Director of the EP units for the same hospital in different places here in Texas. It is as if I got what I wanted anyway but I am happy that this one already works with my cardiologist. The good thing about my local is that there are only three EP‘s that means the experience and the number of procedures is astronomical. I compared to when I came from Boston and we had a Hospital known to be the place to have a gunshot wound taken care of because they handled so many of them due to the location. My new doctor is young and that’s not a bad thing it means he is fresh and excited about what he does and also is on top of new things. He is very aware of the last procedure I had that failed which is important to me because maybe they can see why it failed it was a very aggressive procedure done by the pioneer of it. To have a doctor with that kind of knowledge is amazing I am much happier than I was two days ago about what is going on now.
I will be thinking about you and your weather put on your red flannels lol Thank you for reaching out it’s nice to talk to a neighbor
DawnTX , it's me again after just responding to yours regarding my post. You're going through a tough time and you need answers. As I mentioned, I had a 3-day stay in the hospital to monitor my vitals after beginning on Dofetilide. I was as scared of it as you are. However, it seemed to work well for me for quite a while and I had no side effects whatsoever, i.e. I worried for nothing (I make a fine art of it). You're not whining at all, just reaching out to those possibly having gone through the same and looking for reassurance.
All I can offer is my own experience, and I make no inferences from it for others.
I am 78 and was given Tikosyn (Dofedilite) in the hopsital. The next morning I was told by the doctor that the timing between my heart chambers was too slow, and I could not tolerate the medication. I was put on a magnesium drip for two more days. Apparently my heart rebounded, as I was released and have been fine for the three weeks since.
I had refused the medication on two previous hospital visits, but finally gave in. I am starting to trust my instincts more!
At this point, I would rather deal with day-long afib once every two to six weeks than submit to risky drugs and surgeries. I know that not everyone has that option.
thank you for your information. I realize this is why I have to be in at least three days and they will monitor my heart rate constantly and do an EKG every two hours. I hope that it works and I don’t feel horrible. I already know amiodarone is out as I am allergic to iodine and had the worst experience with that stuff after my first ablation. Multaq was working it did it well after my second ablation for about a year and a half unfortunately after my cardioversion it did not keep me in rhythm after 3 1/2 weeks. My previous doctor had me stay on it even though I have now been told if you’re not in rhythm it does nothing for you. I’m actually wondering if having been honest is the reason it did not work this time after the cardioversion and it really upsets me to think that could be the reason. Pretty much everything they do with our hearts is dangerous when you think about it but unfortunately with my heart rate I cannot continue as I am according to my EP. I had almost 6 months of in the 150s for a heart rate my entire body is exhausted at this point and I can barely walk just doing a simple thing with my arms or standing up for more than a few minutes I can’t even explain what it feels like but it certainly isn’t what I consider a quality of life. Thank you again for taking the time to write but I am going ahead with trying the med I’d rather try it a little bit at a time I’m not ready for a pacemaker
Hello Dawn, I was on the Tikosyn (dofetelide) study when the drug first was being introduced and trying to get approved back around 1995. I started having episodes of blacking out mentally not physically and from then on was diagnosed with atrial fibrulation. I was put in the hospital for one month and was put on an expermental drug (at the time) called Tikosyn (dofetelide). It was a blind study but my Dr. Philip Sager told me I was on the drug, not the placebo and it worked really well as I was running seven miles a day, training other fighters and feeling pretty good for about 22 years and all of a sudden it stopped working. I had to stay in the hospital for 3 days when first put on it which was a protocol at the time and when they take you off of it as well. The one thing I had to watch out for was taking other medications while on it as there were so many interactions with it. Then about five years ago afib came back and I was taken off of Tikosyn and put on amidarone which is so-so as far as keeping me in sinus rhythm. I hope Tikosyn (Dofetelide) works as well for you as it did me! Amiodarone is the last resort medication given, no problems with it for over 5 years now (Thank GOD) it just doesn't work for me as good as Dofetelide did. Wishing you the BEST!
thank you so much for your message. Yes the protocol will be at least three days or five doses I will be in ICU and will have an EKG done every two hours. Oh I hope it works like you were able to have at work. I have already been on amiodarone. That was the first thing they put me on following my first ablation. It made me curl up in a ball and want to die I felt so sick from it. I was on it for four months because they did not want to stop it because my heart was in rhythm but I could not stay on it any longer. My first real episode I physically blacked out twice in one night and I managed to get up and go to bed and wait two more days to call the doctor. Not very smart. To hear what you have been able to accomplish is exciting all I need to do is be able to wash the dishes and every day things I would be so happy. I also would love to be able to walk like I used to and my dog would love it if we could go for our walks as we have beautiful land where we live. Right now I can only go on the porch and have him on his extra long retractable leash. He doesn’t complain but he deserves better. He loves to roll in the grass. Well I have nothing else coming up until my preop the day before and that I get the cardioversion and right into ICU for the med. when I started amiodarone they did it in the hospital but let me out that night after my ablation this is a little bit scary the way they do it. Evidently my flutter being atypical is the problem. A fib is a problem. So what are you doing now to feel well?
Hey Dawn, just trusting in GOD and whatever happens will happen and knowing HE has the BEST plan for my life, however long or short it may be. I'm kind of hardheaded and I keep eating like I shouldn't, taking care of my cats ( I have always been a dog person and never realized what great companion's cats can be) I've had 26 feral cats at one time but just like any thing that shows you love it tears you up when one dies, my back yard is a cemetary for 22 of them. Other than that, just immersing myself in the word of GOD and that's about it. I Pray that Dofetelide works for you as well as it did for me, please let me know you should within a couple of weeks. GOD Bless.
awe Dawn I am so sorry to be reading this! What a worrying time for you, you have been through so much recently. A scary process to get onto the new meds but hopeful that will work and you won’t need a pace and ablate. Sending you love and strength xx
Thank you so much honey. I am happy I have great new doctors etc so far. I hope the med works. I felt so good after my cardioversion. I am not thrilled to be in there just before Christmas but the way I feel now nothing is enjoyable anyway. Now I just have to take a deep breath and wait until the 20th. Thank you for thinking of me
Hi, Dawn, I can totally relate to your worries. When my electro-physiologist told me he wanted me on Dofitilide, I was like, “Yeah, okay, fine, whatever.” He didn’t say I’d be in the ICU, but on a telemetry ward where they can keep an eye on your heart rate. I started my own post about my situation, you can read my story there. Bottom line is, I don’t even HAVE afib and the doc wants me to try Dofitilide. After I got home and read up, I decided to tell him I want to stay on the Verapamil and wait. I wish you much success and nice, steady beats.
wow that is serious stuff without good reason. I will be ICU sat least 3 days or 5 doses with an EKG every 2 hrs. Perhaps because of previous medicine issues but I know my doctor is top notch and because of my issues and running out of medication‘s etc. he is trying to be careful as they all should. You don’t mention if you’ve been on other stuff I had never heard of this one and I also know it is not allowed in the UK or Australia and Europe from what I’ve been told. He has told me side effects are better than amiodarone. I don’t take this lightly taking the meds but it’s better than surgery if it works. Sorry I definitely question them not being positive with you and throwing you on some thing like this. This also will follow a cardioversion which I don’t expect you were supposed to have if you don’t have a fib. Hmmmm We have to question everything. This is not my afib as such right now. It is atypical flutter. Because it is so hard to ablate again he wants to try to do the less invasive first and I did go into NSR following the last cardioversion I just did not stay there longer than 3 1/2 weeks. I have an implanted loop recorder so they can keep really good track of everything inside of my heart. I wish you the best I hope you are feeling better now and I appreciate you taking the time to write.
steady beats nice and slow is all I want for Christmas lol I’ve been singing about my two front teeth actually most of my front teeth because of my a fib major event when I landed on my face. Pretty teeth don’t mean a thing if your hearts not beating right.
I am going to read your story now the more we share I think we lose some of the fear that the unknowns of a fib can create. I kept wondering what was wrong with me this past year but again the more I read I see just how unpredictable a fib as well as the other things that are part of it can be. What a horrible horrible heart issue to have. I feel like it’s been a best kept secret the people really need to know about and I think doctors need to really get on it getting a better handle on the different types of it instead of wasting time on less important factors. Research is wonderful however when they get the money for grants that they have they are going to do everything they can to spend that money besides trying to help us. That’s my opinion anyway. When I read of all of you that I’ve had it for so long and suffered so much and those who have had strokes I feel very angry. The numbers are staggering of those of us who have it. This is not a crapshoot this is lives who are destroyed or do not have the quality that they should. I don’t think I’m asking too much to be able to stand and wash dishes or walk down the hall to the bathroom without pain etc. I don’t think any of us out looking to be champion athletes I think we just want to live and be happy
if we do not connect again happy holidays however you like to celebrate them. I’m hoping by Tuesday afternoon Santa has stopped by the hospital and given me a good heart rate I promise I’ll be a good girl with it
Thanks so much for your note. Yeah, it was a LOT to take in and, as always, the questions spring to your mind after you’ve gone home. When I was 61, I had open heart surgery to repair two leaky valves. It was a rousing success. Then, somewhere down the road, I was getting palpitations and was put on a monitor which showed some not-so-great rhythm issues. The doc did an electrophysiology study, in hopes of doing an ablation, but he couldn’t get the rhythm to duplicate. So, he put me on Metoprolol. Which turned me into the Walking Dead and lowered my heart rate to somewhere in the 40s. The Verapamil was working just fine, nice heart rate in the 50s and 60s, until this recent series of events. I cannot help but think that the external forces I noted in my initial post are responsible. Anyway, you are brave and strong and you’ll rock this!
my novel lol I never heard of the medication you were on last it just shows how doctors stay with certain stuff for me it was Multaq and Metropolol he switched the type of metropolol and added an extra during the day but I am still running almost a constant 115 that’s the slow one. Please keep in touch I’ll let you know how the spa treatments are lol
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To GO or not to GO
Amiodorone 
I think my first cardioversion failed
