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[Life After ICDs??]
Author: Craig (---.dsl.sfldmi.ameritech.net)
Date: 06-11-02 10:33
Hello everyone,
Craig here, still trying to decide if I should get an ICD. Here's another question for you all. Currently, I am on 100mg Toprol, 5mg Norvasc, and have been told to be "sedentary" by Dr. Lever, as well as no alcohol.
My question is this: After getting an ICD, is it common for HCM specialists to relax some of these lifestyle restrictions (such as no alcohol, limited exercise, etc.)? Also, is it common for someone who receives an ICD to get reductions in medication treatment?
If getting an ICD might mean that I can live more of a normal life, particularly in terms of exercise, then I am much more likely to decide to get one.
Craig
P.S. Lisa -- I'd like to arrange a phone conversation with you in the near future, if possible, to discuss more about ICDs. My wife would also like to be in on the conversation. Let me know when would be good, and maybe we can schedule a phone call. Thanks!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: Lisa Salberg (208.47.172.---)
Date: 06-11-02 13:19
Craig -
I would be happy to speak with you, please call the office and set an appointment.
973-983-7429
Best wishes
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 06-11-02 20:53
Craig and others...is there life after ICD's..YES and it is much better then before...or at least it is in my opinion. I have had my ICD since 1997, after the loss of 4 family members and other risk factors, I took the step and got my ICD. needless to say I live a VERY active life - full time job, family...and of course running the HCMA, I do not think I would have the confidence to do so much without my device. I travel around the country, many times alone for much of my trip in airports and such, but I know that if something "BAD" happens my "box" is there to protect me.
Family life is "normal" what ever that means... I did get to do something I had always wanted, and it may sound silly, I taught my daughter to do cartwheels! While I will say my legs hurt like @#$% after, I was able to do it!
I have lived with HCM since age 12, and always understood the risk of "SUDDEN DEATH"...word by the way I hate... having the ICD allows me to focus on living with HCM...rather then living with the fear of 'death by HCM'.
The actual device is... well... yes it hurts when it is put in, but only for a few days...and they have some nice meds for those who do not tolerate pain well... after 2 weeks life is pretty much back to "normal" (there is that word again), after 3 months you begin to forget there is a box in your chest and by 6 months you really forget it is there most of the time (unless your 3 year old head butts you directly over the box...then you remember for a minute or two
You will have an adjustment period while getting use to the idea that a man made device is monitoring your every heart beat..but you know what, I trust my "box" more then my own heart!
I have a Medtronic Gem II, my dad has the Gem III - While other device companies have great products this happens to be what we have now. Issues to ask your doctor about when getting an ICD include - what is the battery life? how long is the charge time between shocks? how long are the leads good for? and How many ICD's have you implanted into people with HCM? that last one is important because like everything else we HCM'ers are a little different then the average bear.
Well Craig this is most likely more then you wanted to know but this is my take on ICD's....
Be well...and best wishes,
Lisa Salberg
President
HCMA
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: Dora (---.proxy.aol.com)
Date: 06-11-02 21:16
Hi all,
My question is are there certain reasons to get a ICD or is it recommended for all HCM patients to get one?
Dora J
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)
Date: 06-11-02 22:30
Dear Dora
An ICD is NOT for everyone at all. There are a set of risk factors that they use to evaluate each patient individually, which is why it is so important to see an HCM specialist so that you get evaluated properly.
The HCMA office can help you find a doctor.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: karen (---.dyn.optonline.net)
Date: 06-12-02 06:28
Dora,
Dangerous rhythms picked up on an EKG, 24 hour holter or an event detector, such as ventricular tachycardia, would be a risk factor as Sarah mentioned earlier. Family history is also a part of the picture or risk factor.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)
Date: 06-12-02 12:27
Dear Dora and Karen
I didn't list all of the risk factors because there are about 5 or 6, but how they get weighted and what your personal risk is not dependant on just checking things off of a list. The general rule is that you need two or three of the risk factors to be considered for an ICD, but sometimees just one of your risk factors is so big it outweighs everything else.
That being said, ventricular tachycardia is very dangerous and if you have a lot of it, please get evaluated sooner (like tomorrow) than later.
If Craig is wrestling with the decision, then I suspect that his risk profile is borderline --according to official medical literature.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: Lisa Salberg (208.47.172.---)
Date: 06-13-02 14:14
Risk factors:
Family history of early/sudden death with HCM.
History of cardiac arrest
History of arrthymia - VT or repeat NSVT
Mass hypertrophy - septal measurement of 3.0 or greater
Adverse blood pressure responce on stress test
Fainting/passing out -repetitive - (careful to evaluate for obstruction)
NOT RISK FACTORS AT THIS TIME:
Obstruction
(I get asked that a great deal)
There are a few other factors but these are the "BIG ONES"
hope it helps clear up some of the questions.
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[What is an ICDs??]
Author: Annette (---.proxy.aol.com)
Date: 06-22-02 22:31
I've been diagnosed only a few months with HCM so all of this is very new to me. What is an ICD?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: What is an ICDs??]
Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)
Date: 06-23-02 22:37
Dear Annette
ICD stands for Implantable cardioverter-defibrillator. It is a device that is installed into the chest and little wires are plugged into the heart and it monitors the heart's rhythm. If the ICD detects certain arrhthymias, it shocks the heart back to normal.
People who are at high risk for sudden death are given ICDs. However, only a small percentage of HCM patients overall will ever need an ICD. You may see a lot on the web about the high risk of sudden death with HCM, but this has recently been de-bunked by the realization that there has over-reporting of the worst cases and under-reporting of mild ones.
Please call the HCMA office at 973-983-7429 to get the name of an HCM specialist if you havne't already done so.
take care.
Sarah
Author: Craig (---.dsl.sfldmi.ameritech.net)
Date: 06-11-02 10:33
Hello everyone,
Craig here, still trying to decide if I should get an ICD. Here's another question for you all. Currently, I am on 100mg Toprol, 5mg Norvasc, and have been told to be "sedentary" by Dr. Lever, as well as no alcohol.
My question is this: After getting an ICD, is it common for HCM specialists to relax some of these lifestyle restrictions (such as no alcohol, limited exercise, etc.)? Also, is it common for someone who receives an ICD to get reductions in medication treatment?
If getting an ICD might mean that I can live more of a normal life, particularly in terms of exercise, then I am much more likely to decide to get one.
Craig
P.S. Lisa -- I'd like to arrange a phone conversation with you in the near future, if possible, to discuss more about ICDs. My wife would also like to be in on the conversation. Let me know when would be good, and maybe we can schedule a phone call. Thanks!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: Lisa Salberg (208.47.172.---)
Date: 06-11-02 13:19
Craig -
I would be happy to speak with you, please call the office and set an appointment.
973-983-7429
Best wishes
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 06-11-02 20:53
Craig and others...is there life after ICD's..YES and it is much better then before...or at least it is in my opinion. I have had my ICD since 1997, after the loss of 4 family members and other risk factors, I took the step and got my ICD. needless to say I live a VERY active life - full time job, family...and of course running the HCMA, I do not think I would have the confidence to do so much without my device. I travel around the country, many times alone for much of my trip in airports and such, but I know that if something "BAD" happens my "box" is there to protect me.
Family life is "normal" what ever that means... I did get to do something I had always wanted, and it may sound silly, I taught my daughter to do cartwheels! While I will say my legs hurt like @#$% after, I was able to do it!
I have lived with HCM since age 12, and always understood the risk of "SUDDEN DEATH"...word by the way I hate... having the ICD allows me to focus on living with HCM...rather then living with the fear of 'death by HCM'.
The actual device is... well... yes it hurts when it is put in, but only for a few days...and they have some nice meds for those who do not tolerate pain well... after 2 weeks life is pretty much back to "normal" (there is that word again), after 3 months you begin to forget there is a box in your chest and by 6 months you really forget it is there most of the time (unless your 3 year old head butts you directly over the box...then you remember for a minute or two
You will have an adjustment period while getting use to the idea that a man made device is monitoring your every heart beat..but you know what, I trust my "box" more then my own heart!
I have a Medtronic Gem II, my dad has the Gem III - While other device companies have great products this happens to be what we have now. Issues to ask your doctor about when getting an ICD include - what is the battery life? how long is the charge time between shocks? how long are the leads good for? and How many ICD's have you implanted into people with HCM? that last one is important because like everything else we HCM'ers are a little different then the average bear.
Well Craig this is most likely more then you wanted to know but this is my take on ICD's....
Be well...and best wishes,
Lisa Salberg
President
HCMA
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: Dora (---.proxy.aol.com)
Date: 06-11-02 21:16
Hi all,
My question is are there certain reasons to get a ICD or is it recommended for all HCM patients to get one?
Dora J
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)
Date: 06-11-02 22:30
Dear Dora
An ICD is NOT for everyone at all. There are a set of risk factors that they use to evaluate each patient individually, which is why it is so important to see an HCM specialist so that you get evaluated properly.
The HCMA office can help you find a doctor.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: karen (---.dyn.optonline.net)
Date: 06-12-02 06:28
Dora,
Dangerous rhythms picked up on an EKG, 24 hour holter or an event detector, such as ventricular tachycardia, would be a risk factor as Sarah mentioned earlier. Family history is also a part of the picture or risk factor.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)
Date: 06-12-02 12:27
Dear Dora and Karen
I didn't list all of the risk factors because there are about 5 or 6, but how they get weighted and what your personal risk is not dependant on just checking things off of a list. The general rule is that you need two or three of the risk factors to be considered for an ICD, but sometimees just one of your risk factors is so big it outweighs everything else.
That being said, ventricular tachycardia is very dangerous and if you have a lot of it, please get evaluated sooner (like tomorrow) than later.
If Craig is wrestling with the decision, then I suspect that his risk profile is borderline --according to official medical literature.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Life After ICDs??]
Author: Lisa Salberg (208.47.172.---)
Date: 06-13-02 14:14
Risk factors:
Family history of early/sudden death with HCM.
History of cardiac arrest
History of arrthymia - VT or repeat NSVT
Mass hypertrophy - septal measurement of 3.0 or greater
Adverse blood pressure responce on stress test
Fainting/passing out -repetitive - (careful to evaluate for obstruction)
NOT RISK FACTORS AT THIS TIME:
Obstruction
(I get asked that a great deal)
There are a few other factors but these are the "BIG ONES"
hope it helps clear up some of the questions.
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[What is an ICDs??]
Author: Annette (---.proxy.aol.com)
Date: 06-22-02 22:31
I've been diagnosed only a few months with HCM so all of this is very new to me. What is an ICD?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: What is an ICDs??]
Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)
Date: 06-23-02 22:37
Dear Annette
ICD stands for Implantable cardioverter-defibrillator. It is a device that is installed into the chest and little wires are plugged into the heart and it monitors the heart's rhythm. If the ICD detects certain arrhthymias, it shocks the heart back to normal.
People who are at high risk for sudden death are given ICDs. However, only a small percentage of HCM patients overall will ever need an ICD. You may see a lot on the web about the high risk of sudden death with HCM, but this has recently been de-bunked by the realization that there has over-reporting of the worst cases and under-reporting of mild ones.
Please call the HCMA office at 973-983-7429 to get the name of an HCM specialist if you havne't already done so.
take care.
Sarah