Aa
Programming
My 46 yr old friend got a Kappa 700 DDDR pacemaker in 2001 for low heartbeat with the "R" feature initially turned off. She has been going back to the doctors since having it because of occasions when she would be awaken in the middle of the night by rapid heartbeats. Since she's been taking medication with the pacemaker, the doctors have changed the dose or type to eliminate the problem. This apparently wasn't making enough of an effect. She went to another hospital where they turned the "R" feature on since she's still a very active person and reprogrammed it. Her subsequent experience was better but still not very consistent. Hence, she continued to go back to the doctors for reprogramming and again change of medication. Lately, she started noticing more of the problem, waking up in the middle of the night. She said sometimes when she would take extra medication to bring down the rate, but now that doesn't seem to matter anymore. Initial advice from her doctors was to not take the medication if it doesn't help bring the rate down. She was also told that she might have to get some exploratory surgery to determine if there is some interference from a blockage or clot. Should she go through this exploratory procedure? Is this not just a programming problem?
Hi, as I've mentioned I've never had a-fib so I can't speak for how it is to run with it. Coumaidin is the recomenned meds to take for it. But as far as running I'm not sure what helps. I would not say I was 'lucky' with BB - I had a terrible time when I first took them. I literally gasped for air while running for a good 6 mos and never knowing if it would get better - but knew I needed the drug and had to make the best of it and hope for the best - but I didn't have a-fib.. I had vt.. So there's a big difference. I've never been one to find a drug that worked perfectly - its always a give and take. I took NO DRUGS for 10 YEARS and then my vt's came along and I had to.. and I had some pretty bad experiences with some of them.. But I think I have one now that I can 'tolerate' - atenolol.. A very small amount of it can be beneficial for me - and then its taking alot of time. I have my antiarrhythmic med as well.
You know I get the feeling you think it sounds like I just got 'lucky' and got just the right meds.. That's not the case at all - it took me years and many trials and errors and never, never giving up hope that I could one day run with these drugs.. Persistence and determination is why I run today.. Of course learning to deal with pain from time to time didn't exactly hurt my situation. But it eventually got better. That could all be gone tomorrow and I would have to start all over again.. There is no quick fix or easy answer to any of this - its what 'works' for you.. Taking that 'chance' and having 'patience' and working on it.. I'm not special - believe me I've had my nightmares with more than one med..
But I stuck with it and I ran 35 road races last year - 6 half marathons and I finally had a 'good' year.. It took many, many hard years to get there. IF you love to run like I do - its not difficult.. Get your doctor to help you.. Most want to see you do the best you can.. Get a manual on a-fib and see what all the alternatives are and talk with your doc. You can try to solve this all by yourself - but two heads are better than one... Docs are there to help you and if they don't want to take the time - get a new one.. Its your life its your responsibility to get answers. You are in control - get all the facts and make a wise decision that best for you and that you can live with.. You are in control..
Good Luck
Marilyn
You know I get the feeling you think it sounds like I just got 'lucky' and got just the right meds.. That's not the case at all - it took me years and many trials and errors and never, never giving up hope that I could one day run with these drugs.. Persistence and determination is why I run today.. Of course learning to deal with pain from time to time didn't exactly hurt my situation. But it eventually got better. That could all be gone tomorrow and I would have to start all over again.. There is no quick fix or easy answer to any of this - its what 'works' for you.. Taking that 'chance' and having 'patience' and working on it.. I'm not special - believe me I've had my nightmares with more than one med..
But I stuck with it and I ran 35 road races last year - 6 half marathons and I finally had a 'good' year.. It took many, many hard years to get there. IF you love to run like I do - its not difficult.. Get your doctor to help you.. Most want to see you do the best you can.. Get a manual on a-fib and see what all the alternatives are and talk with your doc. You can try to solve this all by yourself - but two heads are better than one... Docs are there to help you and if they don't want to take the time - get a new one.. Its your life its your responsibility to get answers. You are in control - get all the facts and make a wise decision that best for you and that you can live with.. You are in control..
Good Luck
Marilyn
Thanks for the info. Want to clarify-I don't have a pacemaker. I have Afib when I run. The EP says no further investigation is needed - just take Coumadin. I'm mulling it over. BTW I have tried Toprol and Rythmol for a week each. Toprol made my legs feel like lead and aggravated my dizziness. I couldn't go more than 5 mts. Rythmol bothered me even at rest. I'm about to try Inderal (short term BB). And you seem to have no problems with BB's. Great that you can continue with your favorite sport. I wish I could do the same. I miss the days when I could run. Finally I was questioning why my docs look at the 160 bpm and classify it as tachycardia, never mind my age. Structurally my heart is nearly the same as it was 20 years ago.
Hi axg9504,
I don't have a-fib and therefore I know very little about it - other than they have made great strides on trying to help patients with this arrhythmia in the last few years.
I would think at 60 years of age - your target heart rate would be lower than 140 - 165 bpm. But if your like me - going up HILLS really brings it up.
If you have a dual chamber pacemaker/defibrilator - you'll have high and low settings for each. For instance my pacemaker low setting is 50 - my heart can't go below 50 or it will pace me. My high pacemaker rate is 165 - it makes it very difficult for me to exert myself beyond that rate. It can be done - but its not a very comfortable feeling as far as my breathing. The reason for 165 is because my low setting for my defibrilator is 175 - now the 'high' pacemaker setting and the 'low' defibrilator setting MUST be a minimum of 10 points away from each other. Or the readings could get confused and I could get shocked. My first VT setting is shut off - my second - VT1 setting is at 175 and my V-fib is at 220. Now if I was to hit 220 it would try to ATP pace me out of it first and it is also set that I won't get shocked until I've been in it for so many seconds. My system has a way of comeing out of my vt's on its own after so many seconds - so my time is rather long before I get shocked or ATP as in hopes I can do it on my own.
If your running - and you have an ICD - depending on the model depends on what it can do for you. I highly recommend a manual and a good talk with your EP doc - for your particular medical condition and how you can achieve your best quality of life - safely.
Another reason 140-165 is considered high - is that I'm on anti-arrhythmic med and beta blocker - and these meds don't normally let a person get their heart rate up that high.. In fact these meds try to keep it down just to keep down the vt's. So, my docs were quite "shocked" (no pun intended) when they put me on a treadmill and I got my heart rate up to 160 bpm and I could have easily gone higher.. As that would explain why I kept screaming I need higher numbers to run UP HILLS.. But learning from the manual - I've learned I can only do so much and achieve it safely. I could go on more meds - but then its so hard to run and breath in the beginning - until such time as I bust through the beta blocker. Luckily I have not busted through my anit-arrhythmic med. At least I submize that as I have had no vt's in about a year. So the meds are keeping them away. Now if I forget my meds !!! let me just say - its not a pretty picture trying to walk, talk and breath all at the same time.. I don't forget my meds.. I just DON'T forget to take my meds.. Perhaps my EP also set my high pacemaker rate at 165 hoping it would help keep me away from the 175 rate and possibly get shocked. When I first got the machine - I insisted he shut off the high pacemaker rate and let me do what I could do on my own and still I had the vt rates programmed on my defibrilator. I never got shocked.. So I don't think I went much higher running uphills on my own. I think that's a different story today. Now that I've been in full heart block and now intermittent full heart block - I think for the most part I've been getting 'stuck' at a very low pulse. I yawn sometimes terribly and my pulse is 52 when it happens.. I normally had a 72 resting pulse. I could ask my EP to raise that number - but then I would be paced 'more' and I would become more dependent and its best to let your heart do as much of the work as possible - as in time I'm sure it won't be able to - but this way it gives me alittle more time before I become dependent. Who knows maybe by then - they'll have a new device out on the market.. At any rate - I'll probably never die - I'll actually rust out with all the hardware inside of me..
Sorry to talk your head off - but I highly recommend a manual.. if you don't have a defibrilator - I would definently negotiate for running numbers - you can get on a treadmill and tweak your pacemaker that way. So your doc can see that your not gasping for air and yet you need more beats to exercise comfortably. There is an awful lot to learn about these devices - and there are so many bells and whistles and I personally like to use them all and get as much out of them as possible and still try not to be pacemaker dependent. So there is some 'tradeoff's you have to consider.
Best Wishes
Marilyn (runner)
I don't have a-fib and therefore I know very little about it - other than they have made great strides on trying to help patients with this arrhythmia in the last few years.
I would think at 60 years of age - your target heart rate would be lower than 140 - 165 bpm. But if your like me - going up HILLS really brings it up.
If you have a dual chamber pacemaker/defibrilator - you'll have high and low settings for each. For instance my pacemaker low setting is 50 - my heart can't go below 50 or it will pace me. My high pacemaker rate is 165 - it makes it very difficult for me to exert myself beyond that rate. It can be done - but its not a very comfortable feeling as far as my breathing. The reason for 165 is because my low setting for my defibrilator is 175 - now the 'high' pacemaker setting and the 'low' defibrilator setting MUST be a minimum of 10 points away from each other. Or the readings could get confused and I could get shocked. My first VT setting is shut off - my second - VT1 setting is at 175 and my V-fib is at 220. Now if I was to hit 220 it would try to ATP pace me out of it first and it is also set that I won't get shocked until I've been in it for so many seconds. My system has a way of comeing out of my vt's on its own after so many seconds - so my time is rather long before I get shocked or ATP as in hopes I can do it on my own.
If your running - and you have an ICD - depending on the model depends on what it can do for you. I highly recommend a manual and a good talk with your EP doc - for your particular medical condition and how you can achieve your best quality of life - safely.
Another reason 140-165 is considered high - is that I'm on anti-arrhythmic med and beta blocker - and these meds don't normally let a person get their heart rate up that high.. In fact these meds try to keep it down just to keep down the vt's. So, my docs were quite "shocked" (no pun intended) when they put me on a treadmill and I got my heart rate up to 160 bpm and I could have easily gone higher.. As that would explain why I kept screaming I need higher numbers to run UP HILLS.. But learning from the manual - I've learned I can only do so much and achieve it safely. I could go on more meds - but then its so hard to run and breath in the beginning - until such time as I bust through the beta blocker. Luckily I have not busted through my anit-arrhythmic med. At least I submize that as I have had no vt's in about a year. So the meds are keeping them away. Now if I forget my meds !!! let me just say - its not a pretty picture trying to walk, talk and breath all at the same time.. I don't forget my meds.. I just DON'T forget to take my meds.. Perhaps my EP also set my high pacemaker rate at 165 hoping it would help keep me away from the 175 rate and possibly get shocked. When I first got the machine - I insisted he shut off the high pacemaker rate and let me do what I could do on my own and still I had the vt rates programmed on my defibrilator. I never got shocked.. So I don't think I went much higher running uphills on my own. I think that's a different story today. Now that I've been in full heart block and now intermittent full heart block - I think for the most part I've been getting 'stuck' at a very low pulse. I yawn sometimes terribly and my pulse is 52 when it happens.. I normally had a 72 resting pulse. I could ask my EP to raise that number - but then I would be paced 'more' and I would become more dependent and its best to let your heart do as much of the work as possible - as in time I'm sure it won't be able to - but this way it gives me alittle more time before I become dependent. Who knows maybe by then - they'll have a new device out on the market.. At any rate - I'll probably never die - I'll actually rust out with all the hardware inside of me..
Sorry to talk your head off - but I highly recommend a manual.. if you don't have a defibrilator - I would definently negotiate for running numbers - you can get on a treadmill and tweak your pacemaker that way. So your doc can see that your not gasping for air and yet you need more beats to exercise comfortably. There is an awful lot to learn about these devices - and there are so many bells and whistles and I personally like to use them all and get as much out of them as possible and still try not to be pacemaker dependent. So there is some 'tradeoff's you have to consider.
Best Wishes
Marilyn (runner)
I've been reading your posts in this forum and hope I can reach you here to ask the following: Why is it that my EP on looking at my event monitor reading that showed some Afib cited the ventricular rates of 120-160 as being high? I was running on a treadmill, albeit at the dreadfully low pace of 10 mts/mile (I could do sub 8's for 10 miles most days 20 years ago). I see that your pacemaker is programmed for 140-165 Max so I wondered why they are calling this high. Now I am 60 years old..
To CCF-MD-bkj:
Thanks for the advice and comment. I'll try to get the mising information.
To Marilyn (runner):
Marilyn, I appreciate your comments very much. You're right, the "R" was for rate response. My friend was a pentathlon athlete when she was in college, but that's like 20+ years ago. Her problem with the low hearbeat only happened in 2001, so I don't think there's any correlation there. But today with the pacemaker, she having more bad days than good days, especially interruptions during sleep. She's not doing any running or rigorous exercise, it's just the normal home and workday activities including on-the-job travelling. She seems to notice the problem more when she's tired. I'm going to get more data such as settings, but like you said it could be a matter of "tweaking" by a good EP. I've always suspected the programming but her doctors keep looking on medication doses. And now a new doctor is recommending exploratory work. Unfortunately she's in Beijing and communication is a bit of a problem.
Thanks again, Marilyn.
Ron
Thanks for the advice and comment. I'll try to get the mising information.
To Marilyn (runner):
Marilyn, I appreciate your comments very much. You're right, the "R" was for rate response. My friend was a pentathlon athlete when she was in college, but that's like 20+ years ago. Her problem with the low hearbeat only happened in 2001, so I don't think there's any correlation there. But today with the pacemaker, she having more bad days than good days, especially interruptions during sleep. She's not doing any running or rigorous exercise, it's just the normal home and workday activities including on-the-job travelling. She seems to notice the problem more when she's tired. I'm going to get more data such as settings, but like you said it could be a matter of "tweaking" by a good EP. I've always suspected the programming but her doctors keep looking on medication doses. And now a new doctor is recommending exploratory work. Unfortunately she's in Beijing and communication is a bit of a problem.
Thanks again, Marilyn.
Ron
Hi, I read your post and 'understood' part of your questions. I have a pacemaker and I think when you talk about "R" you may be referring to "Rate Response" which means - when you exercise the pacemaker can 'sense' that physically you need more 'beats' in order to physically do what a person is doing? I'm a runner so my pacemaker is programmed to bring my heart rate up to 165 bpm - when it senses I need them in order to physically do what I'm doing at the time. Like going uphills or stairs..
I think the DDDR program is one I had in the past.
Most Pacemakers come pre-programmed and the EP doc 'tweaks' the program to adjust to a certain 'settings' per patient and their level of activity. As best as the machine is capable of providing. There is alot to this programming and having an excellent EP (electrophysioloigst) is of utmost importance. I don't mean a 'regular' cardiologist - but one that specializes in the electrical system.. Depending on the overall health of the patient may depend on the type of programming..
I highly recommend you ask your doctor for a 'manual' on the pacemaker and learn about the different 'settings' and the persons particular arrhythmia situation. The more you learn about it the more you can relay what 'settings' you think might work best for that person.. It requires some 'work' on your part - but can be so beneficial in the long run..
I run road races with my pacemaker and although the device helps me immensensely - it is not the same as myheart beat. But since my original heart beat is not 'good' - this machine does wonderfully.
Please remember a persons health is part of their responsibility and the more you learn the more you can personally benefit from what technolgy has to offer. :-)
Good Luck :-)
Marilyn :-)
I think the DDDR program is one I had in the past.
Most Pacemakers come pre-programmed and the EP doc 'tweaks' the program to adjust to a certain 'settings' per patient and their level of activity. As best as the machine is capable of providing. There is alot to this programming and having an excellent EP (electrophysioloigst) is of utmost importance. I don't mean a 'regular' cardiologist - but one that specializes in the electrical system.. Depending on the overall health of the patient may depend on the type of programming..
I highly recommend you ask your doctor for a 'manual' on the pacemaker and learn about the different 'settings' and the persons particular arrhythmia situation. The more you learn about it the more you can relay what 'settings' you think might work best for that person.. It requires some 'work' on your part - but can be so beneficial in the long run..
I run road races with my pacemaker and although the device helps me immensensely - it is not the same as myheart beat. But since my original heart beat is not 'good' - this machine does wonderfully.
Please remember a persons health is part of their responsibility and the more you learn the more you can personally benefit from what technolgy has to offer. :-)
Good Luck :-)
Marilyn :-)
MEDICAL PROFESSIONAL
ron,
Unfortunately theres alot of information missing from your post, which involves what the pacemaker is sensing and what the other settings of the pacemaker are.
Alot of things can be done with programming, and an exploratory surgery seems somewhat extreme for pacemaker malfunction, so Im assuming theres something I'm missing such as medication, what the full settings are, what rhythm they are having at night, and what the pacemaker is seeing while they are having the rhythm.
A second opinion never hurts if your friend is uncomfortable with the options presented, even if only provides peace of mind.
Unfortunately theres alot of information missing from your post, which involves what the pacemaker is sensing and what the other settings of the pacemaker are.
Alot of things can be done with programming, and an exploratory surgery seems somewhat extreme for pacemaker malfunction, so Im assuming theres something I'm missing such as medication, what the full settings are, what rhythm they are having at night, and what the pacemaker is seeing while they are having the rhythm.
A second opinion never hurts if your friend is uncomfortable with the options presented, even if only provides peace of mind.
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