mumtoyou
01-14-2009, 07:07 AM
Hi everyone, I'm looking for a little information for my son. Twelve months ago he was diagnosed with dilated cardiomyopathy and heart failure, EF was 8.2. Since then he has been on meds and his last EF in October was 30.0 . He undergoes another lot of heart tests on Friday before being fitted with an ICD next week. As he is feeling fit and well to the point that he is cycling, walking, light jogging and using weights without feeling exhausted he is a little apprehensive about having the op.. He would like to gain a little insight from those who already have an ICD. How have you coped, How does it feel, Has Life changed dramatically, Will he most likely come out of this feeling better or worse?, Has your EF% improved? Actually anything that you might think he would like to know. He is only 33 years old and has a young family so he needs to feel that this is a positive step. Obviously we are hoping for much improved test results, but hoping don't make it so!! Many thanks.
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Fizzickle
01-14-2009, 09:46 PM
Mumtoyou:
Question: Has your son's EF improved from 8.2% to 30%. I am having some difficulty understanding this part of your message.
I have a two lead ICD. My EF fell from about 40% to 25%, and I had bouts of atrial fibrillation which are almost intolerable with that low an ejection fraction (causes severe angina). The ICD monitors my heartbeats and will take action to 1) pace my heart if heartbeat falls too low, 2) try to pace it out of afib or vtach, or 3) give the heart an electrical shock to restore normal rhythm if all else fails. It does not improve the ejection fraction, for example.
I still take medicines to calm the atrial fibrillation, keep my blood pressure normal, and to keep my choloresterol and low density lipoproteins down.
Immediately after installation of the ICD, activity has to be rather restricted to keep from inadvertanly pulling the leads loose. For about six weeks, you're not supposed to put your left hand higher than your heart or lift more than 4 pounds with the left arm. The incision site will be quite sore for a while. I began to pick up activity gradually and rather naturally. Now I've had the thing for seven months and I seldom even think about it. My heart beat tends to fall below 50 when I am at rest, and sometimes I can detect it pacing the heart to a more normal 60 bpm.
Don't know whether this will help at all.
By the way, I'm 82 years old and still enjoying life.
Regards,
Bill
Question: Has your son's EF improved from 8.2% to 30%. I am having some difficulty understanding this part of your message.
I have a two lead ICD. My EF fell from about 40% to 25%, and I had bouts of atrial fibrillation which are almost intolerable with that low an ejection fraction (causes severe angina). The ICD monitors my heartbeats and will take action to 1) pace my heart if heartbeat falls too low, 2) try to pace it out of afib or vtach, or 3) give the heart an electrical shock to restore normal rhythm if all else fails. It does not improve the ejection fraction, for example.
I still take medicines to calm the atrial fibrillation, keep my blood pressure normal, and to keep my choloresterol and low density lipoproteins down.
Immediately after installation of the ICD, activity has to be rather restricted to keep from inadvertanly pulling the leads loose. For about six weeks, you're not supposed to put your left hand higher than your heart or lift more than 4 pounds with the left arm. The incision site will be quite sore for a while. I began to pick up activity gradually and rather naturally. Now I've had the thing for seven months and I seldom even think about it. My heart beat tends to fall below 50 when I am at rest, and sometimes I can detect it pacing the heart to a more normal 60 bpm.
Don't know whether this will help at all.
By the way, I'm 82 years old and still enjoying life.
Regards,
Bill
mumtoyou
01-15-2009, 03:36 AM
Hi Bill,
Yes my sons Ejection Fraction has risen from 8.2% in Jan, to 30% in Oct. More tests tomorrow to see if there has been any further improvement.
Did your EF fall from 40% to 25% after your ICD was installed?
Many thanks for all the information, it is all helpful.
Yes my sons Ejection Fraction has risen from 8.2% in Jan, to 30% in Oct. More tests tomorrow to see if there has been any further improvement.
Did your EF fall from 40% to 25% after your ICD was installed?
Many thanks for all the information, it is all helpful.
Fizzickle
01-15-2009, 01:31 PM
Mumtoyou:
My EF fell from 40% to 25% after a terrible siege of atrial fibrillation a year or so ago. That's the reason my cardiologist and electrophysiologist both recommeded an ICD. My EF was 25% when I had the implantation, and an echocardiogram this week shows the EF is still 25%.
I had a severe heart attack when I was 47, which was the reason for the 40% EF and for the attacks of atrial fibrillation. And I have congestive heart failure. But the heart failure per se has only put me in the hospital once many years ago with lungs loaded with fluid. And I'm not all that careful with diet.
Your son's increase in EF from 8% to 30% is remarkable. But 30% is still in the range that cardiologists consider subject to sudden death syndrome. I'm no cardiologist, I just wear one of these ICD's, but that's the way it was explained to me: that an EF lower than 35% substantially increases the possibility of SDS.
Your son is young enough that he'll have to have several ICD replacements. Battery life is considered to be 5 to 8 years, and the batteries can't be recharged. At my age, that's hardly a consideration. But younger people have to realize that this will be the case.
The ICD will not of itself cause an improvement in parameters such as ejection fraction. It's there to catch you if the heart's electrical circuits go awry.
I wish you and your son well.
Bill
My EF fell from 40% to 25% after a terrible siege of atrial fibrillation a year or so ago. That's the reason my cardiologist and electrophysiologist both recommeded an ICD. My EF was 25% when I had the implantation, and an echocardiogram this week shows the EF is still 25%.
I had a severe heart attack when I was 47, which was the reason for the 40% EF and for the attacks of atrial fibrillation. And I have congestive heart failure. But the heart failure per se has only put me in the hospital once many years ago with lungs loaded with fluid. And I'm not all that careful with diet.
Your son's increase in EF from 8% to 30% is remarkable. But 30% is still in the range that cardiologists consider subject to sudden death syndrome. I'm no cardiologist, I just wear one of these ICD's, but that's the way it was explained to me: that an EF lower than 35% substantially increases the possibility of SDS.
Your son is young enough that he'll have to have several ICD replacements. Battery life is considered to be 5 to 8 years, and the batteries can't be recharged. At my age, that's hardly a consideration. But younger people have to realize that this will be the case.
The ICD will not of itself cause an improvement in parameters such as ejection fraction. It's there to catch you if the heart's electrical circuits go awry.
I wish you and your son well.
Bill
Fizzickle
01-15-2009, 01:34 PM
Duplicate removed because I can't cancel the whole thing.
mumtoyou
01-16-2009, 06:18 AM
Hi Bill
Tests today went well, but there was no EF done so don't know if there has been any more improvement or not in that area. Have been passing on your information to my son and he also got to talk to a man the same age as him who received his ICD 4 months ago, so between the two of you he is feeling more reassured. Going into it all with a much more possitive attitude. Thanks for everything, I'll drop you a quick line after the operation to let you know how it all went.
Tests today went well, but there was no EF done so don't know if there has been any more improvement or not in that area. Have been passing on your information to my son and he also got to talk to a man the same age as him who received his ICD 4 months ago, so between the two of you he is feeling more reassured. Going into it all with a much more possitive attitude. Thanks for everything, I'll drop you a quick line after the operation to let you know how it all went.
mumtoyou
01-24-2009, 07:46 AM
Hi Bill,
Just wanted to let you know my son's op went very well. He is recovering nicely.We did find out though that his EF had dropped down to 25%. They were going to fit the three lead defibrillator but decided to go with the two. However they installed the three lead box so that they can put in the extra lead when they think its appropriate. Also talking about doing a heart biopsy to investigate further the cause of the disease. But at the moment all is going along very well.
Just wanted to let you know my son's op went very well. He is recovering nicely.We did find out though that his EF had dropped down to 25%. They were going to fit the three lead defibrillator but decided to go with the two. However they installed the three lead box so that they can put in the extra lead when they think its appropriate. Also talking about doing a heart biopsy to investigate further the cause of the disease. But at the moment all is going along very well.
Fizzickle
01-28-2009, 01:26 PM
Thanks for the update, Mumtoyou.
Probably the most important thing right now is for your son and you not to worry about this. Sounds like he's in good hands.
Bill
Probably the most important thing right now is for your son and you not to worry about this. Sounds like he's in good hands.
Bill