Aa
rf ablation
I am going in a couple weeks for my third ablation for inappropriate sinus tachycardia.My cardiologists said it is not ok to just let it go and do nothing due to my heart rate ALWAYS being 120-130 around the clock. On my last ablation I dropped into a junctional rhythm a week later and ended up with a AAIR pacer. Then 2 months later the IST was back.My ep said the goal this time is to ablate enough sinus node tissue, so my atria will be paced. That is when I felt my best, so that is the goal.I wanted to just let it go, b/c I am not symptomatic and I did not want an ablation or medications.My doctor said that I will end up with a tachycardia induced cardiomyopathy by the time I am 30-35 years old.Currently I'm 27-female.My questions are 1) Do you think it is likely that cardiomyopathy will come into play at some point in my future with constant untreated tachycardia 120-130? I find it hard to believe b/c I feel so good right now.2)Do you know of any good medications to try for IST if this next ablation fails again. Tried-propanalol, metoprolol(max dose), cardizem, timolol, and flecainide.3)Do you think flecainide would be a drug worth trying again-it slowed my rate in the past when I took it(I have a structurally normal heart) Do they use flecainide often for IST? My md said it is a bad long-term use drug. I thought it was only for life threatning rhythms? Sotalol worth trying?4)What should I do if the third ablation does not work?5)My tachy gets worse after eating? Is that related to metabolism speeding up?Thank you so very much for your time,effort and knowledge.
Hi Luvyourheart! What a great nickname! Wish more people would do as your name suggests!! Thanks so much for your post. I'm really suprised to learn that infants too have arrhythmia, although I suppose I shouldn't be really. There are not too many parents who post questions about their children's conditions here, but occasionally I see a post from one. I'm really sorry your son has this problem but I'm glad he deals so well with it and tolerates the beta blocker. I actually did take that med! I now take a different and more powerful beta blocker, but thank you for the suggestion! I hope your son continues to do wonderfully well. I know it how hard it must be for you too, and I wish for you equally that all goes well! :)
I'm sorry to hear of your heart problems. My son was diagnosed with SupraVentricular Tachycardia at only 4 days old and I have read that the discovery later in life is very common. If our baby wasn't already in the hospital being evaluated his dx probably would not be until later in life also due to the fact he tolerates the tachycardia well. He shows no sign of stress like sweating forehead,dizziness, etc. He takes Propanelol-generic or Inderal. He is now 6yrs. old and takes 20 mg. 3X a day. Have you tried Propanelol it has been around since 1985--Hince lots of study on this drug 8-)
Hope this helps!
luvyourheart
Hope this helps!
luvyourheart
Hi, I just read your post. Thanks for responding. I heard there was drug name that started with "exantr" or something - that will replace coumadin - but it is not in the USA as its not approved. It has shown some good results for knee replacements and other types of needs. But I don't think its really been proven to help valve patients - I don't think they found many who will 'watch and see' as you know with the valve - its not a matter of a simple replacement surgery. IT will no doubt be last on the list for this type of surgery.
I think when I take - amoxicillin that it can throw my INR out of range. But I think it has to be for more than 3 days.
My surgeon bikes up mountains and my electrician plays tennis - which I know tennis is a very hard sport. But its not like going upstairs..
Anyways, I did a 5k yesterday and got 11:45 minute miles and a 4 miler today and got 12:00 minute miles - not my usuall pace - but the season has just begun.. I'm so excited to even be in the race.. I just have alot of FUN going out and running and making lots of friends along the highways and biways...
I know what you mean by lack of 'anxiety' or fear regarding heart disease. I feel I can't control it - I can only try to contain it and do my best. I just enjoy everyday to the fullest and I don't let it get me down. I have so much to be thankful for.
I agree 'knowledge' is power and this web site is a great source of information. I just met another 'runner' who had a heart attack and got his first ICD - he's asking all kinds of questions and I know he's excited to hear that I run with my ICD.. It warms my heart to help other runners to gain the knowledge that 'anything' is possible with these machines and to ask for and expect the 'best' quality of life. My EP is my best doc - he's a genius and he's put in hours and hours of programming so I can run... I was kind of afraid with full heart block that I might lose my ability to get out and run - after this weekend - I don't think it's going to be a problem. I'll never be fast - but I'm sure to have lots of FUN.. and I've gotten quite a few "finishing" medals just doing that..
I'm so glad to see that your active. I think its just the best medicine for the mind and body if you ask me..
Best Wishes
Runner (Marilyn)
I think when I take - amoxicillin that it can throw my INR out of range. But I think it has to be for more than 3 days.
My surgeon bikes up mountains and my electrician plays tennis - which I know tennis is a very hard sport. But its not like going upstairs..
Anyways, I did a 5k yesterday and got 11:45 minute miles and a 4 miler today and got 12:00 minute miles - not my usuall pace - but the season has just begun.. I'm so excited to even be in the race.. I just have alot of FUN going out and running and making lots of friends along the highways and biways...
I know what you mean by lack of 'anxiety' or fear regarding heart disease. I feel I can't control it - I can only try to contain it and do my best. I just enjoy everyday to the fullest and I don't let it get me down. I have so much to be thankful for.
I agree 'knowledge' is power and this web site is a great source of information. I just met another 'runner' who had a heart attack and got his first ICD - he's asking all kinds of questions and I know he's excited to hear that I run with my ICD.. It warms my heart to help other runners to gain the knowledge that 'anything' is possible with these machines and to ask for and expect the 'best' quality of life. My EP is my best doc - he's a genius and he's put in hours and hours of programming so I can run... I was kind of afraid with full heart block that I might lose my ability to get out and run - after this weekend - I don't think it's going to be a problem. I'll never be fast - but I'm sure to have lots of FUN.. and I've gotten quite a few "finishing" medals just doing that..
I'm so glad to see that your active. I think its just the best medicine for the mind and body if you ask me..
Best Wishes
Runner (Marilyn)
Hi KAD,
I'm so glad you read that. Yes, it was supra ventricular tach I had. I don't know if the sinus tach could be a symptom of mvp, but it might be worth checking... if you aren't going to see a dr, you might ask at www.valvereplacement.com... people are very helpful answering questions there! I can see your situation must be really discouraging. I hear you very clearly about being 27 and going through this. I was 26 when I first learned I had a cardiac problem (went to the dr about something minor), and heart disease and its various permutations were certainly not on my agenda nor part of my vocabulary! I had heart surgery on 10 days notice at 27, and I was actually traumatized by it. The adjustment was really difficult for me. I didn't work for a year, and I changed my direction totally when I did return. I was okay for 17 years though... eventually another heart surgery, which thankfully was much easier, and now the pacer. I was reading more about my pacemaker this morning and found that when I was in the er with a flutter/fib, the pacer may just have been pacing the irregular beat not the rate. So I may've been off base there too. I'm red-faced now! I really hope things work out for you, and you can put this pretty much out of your mind soon!!!
I'm so glad you read that. Yes, it was supra ventricular tach I had. I don't know if the sinus tach could be a symptom of mvp, but it might be worth checking... if you aren't going to see a dr, you might ask at www.valvereplacement.com... people are very helpful answering questions there! I can see your situation must be really discouraging. I hear you very clearly about being 27 and going through this. I was 26 when I first learned I had a cardiac problem (went to the dr about something minor), and heart disease and its various permutations were certainly not on my agenda nor part of my vocabulary! I had heart surgery on 10 days notice at 27, and I was actually traumatized by it. The adjustment was really difficult for me. I didn't work for a year, and I changed my direction totally when I did return. I was okay for 17 years though... eventually another heart surgery, which thankfully was much easier, and now the pacer. I was reading more about my pacemaker this morning and found that when I was in the er with a flutter/fib, the pacer may just have been pacing the irregular beat not the rate. So I may've been off base there too. I'm red-faced now! I really hope things work out for you, and you can put this pretty much out of your mind soon!!!
That's ok emmaj. I appreciate your comments. Did you have SVT(supraventricular tachy), not sinus tach? I don't know if the mitral and tricuspid regurg(it's trace to mild) has anything to do with the inappropriate sinus tach or not? They never mentioned the significance of it? I guess that means it's not concerning. I go for my third ablation in two weeks. I really hope they can get it and cure it this time. It is usually successful right after the ablation and then it comes back several weeks later, but this time hopefully it will be different. This sure is a pain in the rear! It's just not right to be dealing with this at 27 years old. Well, it could always be worse. Take care and good luck with everything.
KAD, I doubt you are still reading this, but a few posts up I said I had persistent s tach with mitral valve regurg... but I realized suddently today that I goofed -- it was sv tach, not sinus... I'm sorry about that! Best of luck to you!
Hi Marilyn,
I am not too crazy about the "rat poison" myself... not fun being between a stroke and a hemorrhage! My range is 2.5-3.5... and I've gone as high as 6.1... which really made me nervous. For the most part it works out okay though, and I get tested (with immediate results) every two to four weeks. What threw me was fever... or so it seemed. Maybe sometime I'll go with the home tester. I have a mechanical valve too. I didn't know about the med in Europe! I know my surgeon intimated there was something on the horizon... but I didn't think it had happened anywhere. That is great news... wonder what it involves, if any restrictions, etc.
My doctors also hate to hear me talk skiing and roller blading... and tell me I HAVE to wear a helmet. I also wear all the other guards for roller blading. I really am careful and avoid hills in both sports! (Too bad, because I like them... but, okay, no more hills!) I'm 51. No way can I best my cardio in fitness (though it sounds like maybe you could :) -- he does a mini-triathlon! So I have to be a little jealous of him!
Sometimes I think it is not that I have a good attitude but that my attitude has been ablated! Seriously though, it's true I generally do not feel anxiety or fear about heart disease... generally - I was a wreck before both surgeries, and after the first I went through a severe depression... and I have felt a lot of anxiety before some caths. My focus these days seems to be on wanting to gain knowledge... and enjoying the good times.
Best of luck with the 50 races! That is just awesome! Hope you bring home lots of medals and a few more trophies. Or just have fun! Either way, right?!
I am not too crazy about the "rat poison" myself... not fun being between a stroke and a hemorrhage! My range is 2.5-3.5... and I've gone as high as 6.1... which really made me nervous. For the most part it works out okay though, and I get tested (with immediate results) every two to four weeks. What threw me was fever... or so it seemed. Maybe sometime I'll go with the home tester. I have a mechanical valve too. I didn't know about the med in Europe! I know my surgeon intimated there was something on the horizon... but I didn't think it had happened anywhere. That is great news... wonder what it involves, if any restrictions, etc.
My doctors also hate to hear me talk skiing and roller blading... and tell me I HAVE to wear a helmet. I also wear all the other guards for roller blading. I really am careful and avoid hills in both sports! (Too bad, because I like them... but, okay, no more hills!) I'm 51. No way can I best my cardio in fitness (though it sounds like maybe you could :) -- he does a mini-triathlon! So I have to be a little jealous of him!
Sometimes I think it is not that I have a good attitude but that my attitude has been ablated! Seriously though, it's true I generally do not feel anxiety or fear about heart disease... generally - I was a wreck before both surgeries, and after the first I went through a severe depression... and I have felt a lot of anxiety before some caths. My focus these days seems to be on wanting to gain knowledge... and enjoying the good times.
Best of luck with the 50 races! That is just awesome! Hope you bring home lots of medals and a few more trophies. Or just have fun! Either way, right?!
Hi, You've certainly had alot of cardiac events !!! You've done very well to keep the positive attitude. :-)
I took up cross country skiing this year. I don't wear a helmet - but that might not be a bad idea. I have a helmet that I bought for riding my bike. So maybe I'll use it next time. My new PCP said - she does not want me to bike. I was very upset and very angry. But I recently read if you hit your head hard when on coumadin - you can die. I have a home monitor INR testing kit (Pro Time) and on Monday I was at 5.5 - so I called my coumadin clinic and they told me to hold back my med for two days and then on Wed take 10 mg and Thurs 5 mg. then retest on Friday and call them back. I just seem to be stable for weeks and then bang I'm to high.. I went away last weekend to Tenn to see my daughter and the last time I got this INR high was when I did a half marathon down at Hyannis Mass. Once again I was traveling..
I wonder if we 'really' have to take this rat poison. I have a mechanical mitral valve and I guess they say its a MUST. A lady I work with takes it for A-Fib - well she got very 'weak' and so she went to the doctors - they did a blood test and she discovered that she must of been bleeding internally - they had to give her a pint of blood for the next 3 days and she stopped her coumadin. She's better now. But I don't know what's worse having a stroke or bleeding internally !!! I wish they'd come out with a better med for this stuff. Anyways, I told the lady at work - to get a home monitor and test herself 'weekly' and that might help prevent it from happening again. I home test weekly. Plus, I'll bring my monitor into my coumadin clinic and we check it to make sure its accurate every 3 mos. We do that by me taking my INR on my machine, again on their machine and then again in the lab. They all come out about the same.
How's your coumadin going? What range do you have to keep your INR at? I would really be careful roller blading with coumadin. Helmet, knee pads and elbow pads would probably give you some protection. I know biking isn't better -but I think (I) would go 'faster' on roller blades than I would on my bike.. Although I would like to just 'enter' a duathlon race my bike and just 'finish'.. My new PCP is very strict. I told her I was running half marathons - she nearly flipped out.. Then I told her I was slow - so don't worry - so she asked how fast I did - and she said: That's better than I can do !!! I was going to suggest she work out once in a while - but I didn't want to sound rude. I told my cardio a couple weeks ago - I was having a hard time breathing when going upstairs and he said well how many stairs are we talking about -and I told him and he said: Well, I would have a hard time breathing going up that many stairs !!! Once again I just smiled and thought - you need a new doc or you need to get to the gym. I plan on running up mountains this summer and if I can't go up a few stairs - then there's a problem. I work out pretty much everyday - running, nautilus, spinning and sometimes I lift light weights.
My running season is about to 'officially' begin this weekend.. I've done a half marathon and a one mile race so far this year. But its been so cold and I'm excited to see the weather warming up and racing begin. I don't really run FAST - just kind of jog. My best pace last year was 10:30 - about 5 mos after my open heart. I thought that was pretty good. I got 3 medals and gave them all to my surgeon. He did a great job on my surgery. So, I give him my medals as a token of my appreciation for a job well done. I can run really well with this valve - doesn't seem to prohibit me much - but I only did 17 races last year I hope to do 50 this year !!! I'll turn 50 this year and I would like to do a race for each year.. I hope the valve can keep up with me.. I'll go slow and just finish. But I still figure I should be able to get several medals this year if I did last year and that was right after my open heart. I told my surgeon - the medals are nice - but he should have a trophy.. I've only gotten two trophys in my life.. So, I'd like to get him one. He's a nice guy - he use to run - but because of knee problems he now bikes..
Well, as usual I chatted up a storm... I hope your coumadin is going well. I wish we didn't have to take it.. There was a new drug on the market that was approved in Europe - but the FDA won't approve it here in the states...
Best Wishes
Marilyn (runner)
I took up cross country skiing this year. I don't wear a helmet - but that might not be a bad idea. I have a helmet that I bought for riding my bike. So maybe I'll use it next time. My new PCP said - she does not want me to bike. I was very upset and very angry. But I recently read if you hit your head hard when on coumadin - you can die. I have a home monitor INR testing kit (Pro Time) and on Monday I was at 5.5 - so I called my coumadin clinic and they told me to hold back my med for two days and then on Wed take 10 mg and Thurs 5 mg. then retest on Friday and call them back. I just seem to be stable for weeks and then bang I'm to high.. I went away last weekend to Tenn to see my daughter and the last time I got this INR high was when I did a half marathon down at Hyannis Mass. Once again I was traveling..
I wonder if we 'really' have to take this rat poison. I have a mechanical mitral valve and I guess they say its a MUST. A lady I work with takes it for A-Fib - well she got very 'weak' and so she went to the doctors - they did a blood test and she discovered that she must of been bleeding internally - they had to give her a pint of blood for the next 3 days and she stopped her coumadin. She's better now. But I don't know what's worse having a stroke or bleeding internally !!! I wish they'd come out with a better med for this stuff. Anyways, I told the lady at work - to get a home monitor and test herself 'weekly' and that might help prevent it from happening again. I home test weekly. Plus, I'll bring my monitor into my coumadin clinic and we check it to make sure its accurate every 3 mos. We do that by me taking my INR on my machine, again on their machine and then again in the lab. They all come out about the same.
How's your coumadin going? What range do you have to keep your INR at? I would really be careful roller blading with coumadin. Helmet, knee pads and elbow pads would probably give you some protection. I know biking isn't better -but I think (I) would go 'faster' on roller blades than I would on my bike.. Although I would like to just 'enter' a duathlon race my bike and just 'finish'.. My new PCP is very strict. I told her I was running half marathons - she nearly flipped out.. Then I told her I was slow - so don't worry - so she asked how fast I did - and she said: That's better than I can do !!! I was going to suggest she work out once in a while - but I didn't want to sound rude. I told my cardio a couple weeks ago - I was having a hard time breathing when going upstairs and he said well how many stairs are we talking about -and I told him and he said: Well, I would have a hard time breathing going up that many stairs !!! Once again I just smiled and thought - you need a new doc or you need to get to the gym. I plan on running up mountains this summer and if I can't go up a few stairs - then there's a problem. I work out pretty much everyday - running, nautilus, spinning and sometimes I lift light weights.
My running season is about to 'officially' begin this weekend.. I've done a half marathon and a one mile race so far this year. But its been so cold and I'm excited to see the weather warming up and racing begin. I don't really run FAST - just kind of jog. My best pace last year was 10:30 - about 5 mos after my open heart. I thought that was pretty good. I got 3 medals and gave them all to my surgeon. He did a great job on my surgery. So, I give him my medals as a token of my appreciation for a job well done. I can run really well with this valve - doesn't seem to prohibit me much - but I only did 17 races last year I hope to do 50 this year !!! I'll turn 50 this year and I would like to do a race for each year.. I hope the valve can keep up with me.. I'll go slow and just finish. But I still figure I should be able to get several medals this year if I did last year and that was right after my open heart. I told my surgeon - the medals are nice - but he should have a trophy.. I've only gotten two trophys in my life.. So, I'd like to get him one. He's a nice guy - he use to run - but because of knee problems he now bikes..
Well, as usual I chatted up a storm... I hope your coumadin is going well. I wish we didn't have to take it.. There was a new drug on the market that was approved in Europe - but the FDA won't approve it here in the states...
Best Wishes
Marilyn (runner)
Hi,
Thanks for telling me about the Aair pacer. The dual chamber I have actually is not an ICD... there are just two leads... and when it was knocking my heart rate back in the hospital, it was the atrial lead at work... because it was working on the a flutter/fib... I don't know how well it works at knocking back... because I need meds too. I was interested to read that you have mild mitral and tricuspid regurg... at first it didn't sink in... but now I'm wondering. I had persistent sinus tach with mitral and tricuspid regurg... but the regurg was moderate or maybe moderate/severe by the time I developed it. My symptoms were controlled by Verapamil. Without Verapamil, my magic bullet, I was lost! I wonder if the valve regurg could be your problem... and if that would make a difference in your treatment?? Maybe a TEE to better evaluate the valve problem would help. Best of luck!!
Thanks for telling me about the Aair pacer. The dual chamber I have actually is not an ICD... there are just two leads... and when it was knocking my heart rate back in the hospital, it was the atrial lead at work... because it was working on the a flutter/fib... I don't know how well it works at knocking back... because I need meds too. I was interested to read that you have mild mitral and tricuspid regurg... at first it didn't sink in... but now I'm wondering. I had persistent sinus tach with mitral and tricuspid regurg... but the regurg was moderate or maybe moderate/severe by the time I developed it. My symptoms were controlled by Verapamil. Without Verapamil, my magic bullet, I was lost! I wonder if the valve regurg could be your problem... and if that would make a difference in your treatment?? Maybe a TEE to better evaluate the valve problem would help. Best of luck!!
dear everybody
somehow I have same symptoms, sometimes i feel dizzy but when i check my pulse it is normal as always for example it is 60 or little more or less.but sometimes it beats faster till 90-100 without any activity, at this period of beats i feel something happens in my chest, it is not pain or ? and after a short time (1 or 2 secs)i feel a heavy pulse and after that every thing goes ok but some anxiety.If casually through this event I check my pulse I feel an interrupt or skipping pulse.It makes me crazy.Also sometimes i feel pain in my chest bones dr.s siad they are due to ur anxiety.
I did echo which was ok and 24 hrs holter i had a period of 43 bpm during sleep at night and a 2.14 secs rest in hearts beat plus 2 rests less than 2 secs.
whats going on me? what are skips in my heart with odd feeling?
I am 27 yr/male ,173 cm and 73 kgs casually sport(soccer)
somehow I have same symptoms, sometimes i feel dizzy but when i check my pulse it is normal as always for example it is 60 or little more or less.but sometimes it beats faster till 90-100 without any activity, at this period of beats i feel something happens in my chest, it is not pain or ? and after a short time (1 or 2 secs)i feel a heavy pulse and after that every thing goes ok but some anxiety.If casually through this event I check my pulse I feel an interrupt or skipping pulse.It makes me crazy.Also sometimes i feel pain in my chest bones dr.s siad they are due to ur anxiety.
I did echo which was ok and 24 hrs holter i had a period of 43 bpm during sleep at night and a 2.14 secs rest in hearts beat plus 2 rests less than 2 secs.
whats going on me? what are skips in my heart with odd feeling?
I am 27 yr/male ,173 cm and 73 kgs casually sport(soccer)
Hi Marilyn, Thanks again for your post. It is all really interesting to me. I am really impressed by your running!!! It inspires me to try to find out just how much better I could do... instead of being satisfied with maintaining the status quo. My cardio actually says I'm in better shape than most of his patients and that I've been through more than most of them... which makes me feel bad for his other patients!! My history of heart dz dates from my 20s, but my history of exercising predates the cardiac problems... and I never stopped, which really has been a tremendous benefit to me over time. I have had bypass surgery, heart attacks, mitral valve replacement, acute heart failure episode due to arrhythmia, now the pacer... I x-country ski on gentle terrain wearing a helmet (coumadin) and feeling foolish, but I love it far too much to stop... and the roller blading season is about to begin. I have to be extremely careful... but so far, so good. Best of luck and times!! :)
Hi emmaj, I'm glad I could be helpful. I hope your able to seek that information that your looking for. Manuals were of great assistance to me. Once I got shocked from my ICD and I had to go to the ER - then I had better know 'my' condition and speak their language. I know my situation is probably different from yours - so I hope you get answers to your personal situational questions.
You know when you ask questions - you get more from your EP doc than just a 'visit'... You learn about how you can get the most from your cardia condition out of life. ]
I'm glad to hear you work out. I have found meds to hold back my capacity to run fast in the beginning. But only temporarily -once I worked past my meds and make the programming work for me -only then can I achieve my goal. I'm not always breathing at 100% when I cross the finish line - but as any runner wouuld say thats probably normal for any racing person - so I just work as hard as I can and I get my machine programmed to provide me with the best possible capabilities. I also realize these machines have only so much capability - although they're good - I'm not sure they're that good. SO there is a give and take and a real learning 'curve'. Last year my best PR was 10:30 minute miles after just a few mos from open heart surgery. So I know it can be 'done' - with alittle HARD WORK and persistance...
I know my Heart is not in the best condition as far as 'cardiac conditioning' but - I'm able to achieve as much and in some cases probably better - than most. I would not even have anticipated running in races years ago.. Meds are a real help, but I have found they are only 50% of the cure - and ICD programming is the other 50%. If I'm going to have a problem with arrhythmia it is almost always associated with exercise... or some other type of physical stress (getting sick, e.g.) or emotional stress. If my 'adrenaline' is pumping high from excitement - I'm sure not to be breathing.. My machine does not have the technology of this feature called: 'minute ventilation' - so I know if I get excited - I'm not going to breath and that's not because I can't - its just the lack of technology on my machine. But with the newer machines on the market - I've heard the feature is on the market - so when my ICD battery wears down - I'm sure to have a very 'exciting' life.. and breath at the same time !!! Can you imagine - laughter and breathing all at the same time - now that's 'exciting'..
I could sit back and complain about the things I don't have in life or - I can take what I do have and be HAPPY, and LIVE LIFE and LOVE IT !!! I think I'm a hell of alot happier than most.
Happy Spring to you :-)
Best Wishes
Marilyn (runner)
You know when you ask questions - you get more from your EP doc than just a 'visit'... You learn about how you can get the most from your cardia condition out of life. ]
I'm glad to hear you work out. I have found meds to hold back my capacity to run fast in the beginning. But only temporarily -once I worked past my meds and make the programming work for me -only then can I achieve my goal. I'm not always breathing at 100% when I cross the finish line - but as any runner wouuld say thats probably normal for any racing person - so I just work as hard as I can and I get my machine programmed to provide me with the best possible capabilities. I also realize these machines have only so much capability - although they're good - I'm not sure they're that good. SO there is a give and take and a real learning 'curve'. Last year my best PR was 10:30 minute miles after just a few mos from open heart surgery. So I know it can be 'done' - with alittle HARD WORK and persistance...
I know my Heart is not in the best condition as far as 'cardiac conditioning' but - I'm able to achieve as much and in some cases probably better - than most. I would not even have anticipated running in races years ago.. Meds are a real help, but I have found they are only 50% of the cure - and ICD programming is the other 50%. If I'm going to have a problem with arrhythmia it is almost always associated with exercise... or some other type of physical stress (getting sick, e.g.) or emotional stress. If my 'adrenaline' is pumping high from excitement - I'm sure not to be breathing.. My machine does not have the technology of this feature called: 'minute ventilation' - so I know if I get excited - I'm not going to breath and that's not because I can't - its just the lack of technology on my machine. But with the newer machines on the market - I've heard the feature is on the market - so when my ICD battery wears down - I'm sure to have a very 'exciting' life.. and breath at the same time !!! Can you imagine - laughter and breathing all at the same time - now that's 'exciting'..
I could sit back and complain about the things I don't have in life or - I can take what I do have and be HAPPY, and LIVE LIFE and LOVE IT !!! I think I'm a hell of alot happier than most.
Happy Spring to you :-)
Best Wishes
Marilyn (runner)
Is it FDA approved?
I feel I should qualify one of your comments so that it does not alarm people - VT is not always life threatening and for those that have it with a structurally normal heart I believe the mortality rate is the same as the general population.
Hi,
Lak, I think Tykosin is FDA approved now... Marilyn, thank you so much for your post. I really appreciate your suggestion! I will ask my EP if he will obtain a manual for me. I was wondering how to learn more... I like my EP a lot, but I know I want more information than he would provide in a few minutes, and my online efforts have not been overly successful. I'm interested that you're a runner. That's fantastic. I work out, but I have not really been able to increase my exercise capacity much. Meds help, but if I'm going to have a problem with arrhythmia it almost always is associated with exercise... or some other type of physical stress (getting sick, e.g.) or emotional stress. I agree, knowledge is power, and power can be very useful... it helps to feel a measure of control over this stuff. And I think the more you know and know what questions to ask, the more docs tend to explain... Thanks again and happy spring!
Lak, I think Tykosin is FDA approved now... Marilyn, thank you so much for your post. I really appreciate your suggestion! I will ask my EP if he will obtain a manual for me. I was wondering how to learn more... I like my EP a lot, but I know I want more information than he would provide in a few minutes, and my online efforts have not been overly successful. I'm interested that you're a runner. That's fantastic. I work out, but I have not really been able to increase my exercise capacity much. Meds help, but if I'm going to have a problem with arrhythmia it almost always is associated with exercise... or some other type of physical stress (getting sick, e.g.) or emotional stress. I agree, knowledge is power, and power can be very useful... it helps to feel a measure of control over this stuff. And I think the more you know and know what questions to ask, the more docs tend to explain... Thanks again and happy spring!
An AAIR pacer is a single chamber atrial pacer. Paces the atrium only. The only thing my pacer is good for is keeping me from going to slow. It is inhibited, so when I have my own rhythm that is above 60 beats per minute, the pacer does nothing. If my own intrinsic rhythm were to drop below 60 beats then the pacer would turn on and pace me. It is also rate responsive, which means it senses my movement, body temperature, and respiratory rate and paces accordingly to try and mimic what a normal condution system would do. This is not helping me at all right now because my own rhythm is sinus tachycardia at 120-130 beats a minute. I wish the pacer would help, but it only helps if my heart were to start beating slowly. It's basically useless right now. A defib helps with the life threatning rhythms, like ventricular tachycarida, and will shock you to terminate it. Thank god, I don't have problems with ventricular tachyarrhythmias. Thanks for the interesting comments.
Hi, I read your post and having myself a dual chamber Guidant ICD - I wanted to learn about the capabilities of the machine and to understand enough to be able to continue my running. The machine comes with a 'basic' program and I didn't think that 'basic' program would help my running. So, I asked my EP lots of questions and I read the manual so I could understand his 'language'.. I asked for 'higher' VT rates so as to be able to run up hills.
As I said I asked my EP doc for a manual - he in turn requested the manufacturer to send ME one. Usually you can't get them on your own - but your EP can get you one...
From time to time I ask for and get printouts of my ICD Interrogations. Presently, I'm paced 100% in my ventricle. I don't feel it.. I did at first - but I got use to it. I could dwell on it and worry about it - but I don't have the time - nor would it serve any purpose.
My interrogations do not show my pacing - they just show my VT's and only ones that are at certain high rates. My machine is set to keep my heart rate no lower than 50 bpm.
The more you learn the logo - the easier it is to understand the machine and your rhythms - I always found that knowledge is power and gives one a certain sense of security - in that they can at least speak the language in an ER room. I do remember there was a listing for different rhythms and where they originate from. There are some websites that explain and show the different rhythms..
Its amazing how many people still insist I have just a pacemaker - they can't seem to comprehend that I have a defibrilator as well as pacemaker.. They don't understand that they are two very different programs.. I have many types of rhythms - what I get depends on what kind of mood I'm in :-)
Take Care
Marilyn (runner)
As I said I asked my EP doc for a manual - he in turn requested the manufacturer to send ME one. Usually you can't get them on your own - but your EP can get you one...
From time to time I ask for and get printouts of my ICD Interrogations. Presently, I'm paced 100% in my ventricle. I don't feel it.. I did at first - but I got use to it. I could dwell on it and worry about it - but I don't have the time - nor would it serve any purpose.
My interrogations do not show my pacing - they just show my VT's and only ones that are at certain high rates. My machine is set to keep my heart rate no lower than 50 bpm.
The more you learn the logo - the easier it is to understand the machine and your rhythms - I always found that knowledge is power and gives one a certain sense of security - in that they can at least speak the language in an ER room. I do remember there was a listing for different rhythms and where they originate from. There are some websites that explain and show the different rhythms..
Its amazing how many people still insist I have just a pacemaker - they can't seem to comprehend that I have a defibrilator as well as pacemaker.. They don't understand that they are two very different programs.. I have many types of rhythms - what I get depends on what kind of mood I'm in :-)
Take Care
Marilyn (runner)
I'm sorry. Your right it is not always life threatening. I apologize if I alarmed anyone, that wasn't my intention. Should have thought more about that.
Hi,
I'm not sure what an AAIR pacer is?? I have a dual chamber medtronic and it keeps my heart rate up above 60 (so I can take Sotalol) but evidently it also knocks my heart rate down when it gets too fast. I actually didn't know it functioned that way till I was in the emergency room with a flutter/fib and someone looking at the monitor told me she could tell I was being paced... to get the rate down. Mode switch? I wish I knew the basics of how it works... The pacer doesn't keep my heart rate below a certain rate (in the same way it keeps it above 60), but it periodically slows the rate if it's too high... at least that's my understanding... Cardizem plus sotalol works pretty well for me. My docs were also considering a med called Tykosin, which has been used in Europe for a long time, but not so long in the U.S. It is a powerful antiarrhythmic... not sure about slowing the rate?
I'm not sure what an AAIR pacer is?? I have a dual chamber medtronic and it keeps my heart rate up above 60 (so I can take Sotalol) but evidently it also knocks my heart rate down when it gets too fast. I actually didn't know it functioned that way till I was in the emergency room with a flutter/fib and someone looking at the monitor told me she could tell I was being paced... to get the rate down. Mode switch? I wish I knew the basics of how it works... The pacer doesn't keep my heart rate below a certain rate (in the same way it keeps it above 60), but it periodically slows the rate if it's too high... at least that's my understanding... Cardizem plus sotalol works pretty well for me. My docs were also considering a med called Tykosin, which has been used in Europe for a long time, but not so long in the U.S. It is a powerful antiarrhythmic... not sure about slowing the rate?
Dear Dotty and Kad,
Thanks so much for responding. I have seen an EP in Pennsylvania and an EP in Arizona, also a cardiologist and heart surgeon. All have said dont worry about it because all test show no heart problems.Hmmmm I have had this for a very long time. Started when I was a kid, and I am now 43. Why don't all doctors feel this is serious? I wish I understood better.
Thanks for replying,
and thanks for caring,
Leslie :)
Thanks so much for responding. I have seen an EP in Pennsylvania and an EP in Arizona, also a cardiologist and heart surgeon. All have said dont worry about it because all test show no heart problems.Hmmmm I have had this for a very long time. Started when I was a kid, and I am now 43. Why don't all doctors feel this is serious? I wish I understood better.
Thanks for replying,
and thanks for caring,
Leslie :)
Take this risk of cardiomyopathy seriously. I had very rapid rates for about a year off and on with about 10 cardioversions and multiple drugs. I then did develop cardiomyopathy with an EF of 30 %. So now I have a biventricular pacer and an ICD and am on a huge number of drugs. I don't feel well and wouldn't wish this on anyone. I was very resistant to the concept of AV node ablation and pacer dependency but in hindsight, I wish I would have taken their advice from the onset. I always thought I could overcome this. You do not want your rates this high.
Hi Leslie. The pacemaker takes care of you for very slow heart rates. It does not do anything for rapid heart rates. The pacemaker would kick in if my own heart rate dropped below 60. Once my heart rate hits 59, the pacer turns on. Currently I am not using the pacer b/c my rates are 120's. I went from using it 100% to 70% to 50% and now to 0%. All my labwork is normal also. I wish it would help with tachycardia. Be careful with not treating your tachycardia. I'm not a doctor, I'm a nurse, but I have had multiple doctors tell me that prolonged rapid rates will cause cardiomyopathy. Make sure the doctors that are telling you this are reputable. The only reason I'm treating this is to protect my future health. I don't know how old you are, I'm 27, and I've got a lot of living to do (: Otherwise, I'm lucky, b/c currently I have no symptoms with rapid rates. If you aren't going to treat it have them at least watch your ejection fraction with echocardiograms every six months or so. Take care and good luck!
Kad,
I have a simular situation. I have had 2 ablations without sucess. My HR is still 130-140 most of the time. Some doctors say this is ok to live with and will not hurt you. The problem with my tachycardia is when I do any kind of exercising my HR is around 200bpm. I do have symptoms with my high HR, even at 140bpm all day. Lightheadedness, SOB, sometimes nausea. I have tried many medications. Still HR is high. So the way I see it right now , I am going to do nothing. All heart related test have been normal. I have also had blood work done and nothing has been found. Question: you can still have a high HR with a pacer?? I thought that would take care of the high HR problem for you.
Take care,
Leslie
I have a simular situation. I have had 2 ablations without sucess. My HR is still 130-140 most of the time. Some doctors say this is ok to live with and will not hurt you. The problem with my tachycardia is when I do any kind of exercising my HR is around 200bpm. I do have symptoms with my high HR, even at 140bpm all day. Lightheadedness, SOB, sometimes nausea. I have tried many medications. Still HR is high. So the way I see it right now , I am going to do nothing. All heart related test have been normal. I have also had blood work done and nothing has been found. Question: you can still have a high HR with a pacer?? I thought that would take care of the high HR problem for you.
Take care,
Leslie
I forgot to tell you that on my last echo I had mild tricuspid and mitral regurg. Is that related to the tachycardia? My ef is normal at 55-60%. Couldn't they just watch me for cardiomyopathy with frequent echos if the next ablation doesn't work. It just seems like I am taking more risk with each ablation I go for. I guess I already have the biggest risk of the procedure- a pacemaker. Can you talk a little about the risk of the phrenic nerve with IST ablations. At the last ablation my cardiologist said it was not a problem at all. Are they able to visualize the phrenic nerve if you take a deep breath during the ablation? Thanks again.
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