Getting to know more

Hi. My grandfather is a candidate for the pacemaker defibrillator combo device. I nor my family knows much about all this and we are trying to get some info and opinions. Apparently just the pacemaker wont do what his heart need. His heart only does 35% of the work it should and is decreasing rapidly. He has always been an outdoorsmen and now can barely get out of bed. He was taking medication that seemed to help but the side effects were worse. He just wants to be able to get up and around again. We have heard stories of the defibrillator knocking people flat on the ground when it goes off and are just really concerned about it. We feel more comfortable about the pacemaker part and haven't heard many negative views about it. Can any of you give advice or opinions. Do you have one and how do you like it? Any info would be so helpful!

7 Comments

ICD/pacemaker

by joy1 - 2008-07-30 02:07:51

Hi Mest 287,

Smitty, once again has led you in the right direction on the pacer part and as far as he went on the defib part. He's an experienced consumer and a smart guy. I can help address some of the defib info.

The problem with an ICD is no one can predict who is going to respond how when their ICD fires. Some people claim to not feel anything, others can be knocked unconscious if they are not already unconscious. There is just no way to tell. ICDs are programmed to respond with different levels of joules being fired depending on what the device is programed to respond to. It does happen sometimes that an ICD is not properly programmed and will misinterpret information or respond according to programing that is inappropriate to the problem the person has. Under rare circumstances there can be problems with the leads which can cause misfires also.

Like Smitty said, for most people, if the device does fire, it will have probably just attempted to save your father's life. OFten times the defib is just a precaution for people who are at high risk to experience sudden cardiac death (SCD). Statistically, far more people survive who have implants than those who do not but it is not a 100% fool proof guarantee of cheating death.

So a general understanding is that the pacer component of and ICD is for brachycardia - slow heart rate and the defib part responds to ventral or atrial tachycardia and/or fibrillation. Your being really smart in seeking information before making a decision. There is often times more involved in making this choice than just medical recommendation. My surgeon told me that atleast 50% of the people he counsels, choose not to have implants in spite of his recommendation. It is wonderful that you are doing research and are helping advocate for your grandfather.

My best to your grandfather and to you, his family. It's hard for him but often harder for the family.

Joy

ICD/PM

by thomast - 2008-07-30 05:07:11

I posted a comment here before to answer questons someone had about their grandfather, after I posted it I checked and it was there. A couple of hours later I checked looking for any further comments, and it was gone. I don't who censores this board and removes messages, but I will not bother to try to be helpful, if somone is just going to remove them. That is what happens on the "inplantable" site.

Thomas

Lost Message

by SMITTY - 2008-07-30 10:07:33


Thomas,

Please remember that you are dealing with computers. They are not perfect and it seems many times that they have a mind of their own. As for having messages removed, so far as I know only Blake can do that and furthermore I think he does it only when a message contains inappropriate content. Now any of us that have seen your messages and comments know you will never have anything in a message that would cause it to be removed. So rather than get angry, repost your message. I always try to keep a copy of my messages so that I can repost those that go off into wherever during my attempt to get it posted. Too often, just because I know what I want to do does not mean my computer will get the message, or it is just being contrary again. Maybe yours and mine are brothers.

Best regards,
Smitty

New Pacemaker

by SMITTY - 2008-07-30 12:07:26


Hello,

PLEASE UNDERSTAND THAT WHAT I AM ABOUT TO SAY IS BASED ON A BUNCH OF ASSUMPTIONS FROM WHAT I SEE IN YOUR MESSAGE AND MAY NOT APPLY TO YOUR GRANDFATHER'S SITUATION.

With that said, I'll put in my 2 cents worth on the pacemaker. I've had one for 8 yes. I was 71 when I got mine and total recuperation time was about two weeks, although any discomfort from the surgery was more than 90% gone in about 3 days. In my case it took a while (which is not uncommon for anyone that gets a pacemaker) to get things adjusted. But once that was done, I can truthfully say I do not even know it is there. I can feel a very small lump where it is implanted, but it causes me no discomfort whatsoever.

The setting on mine is low 60 and high 120. That means if my heart rate drops below 60 BPM, the pacemaker comes on line and brings my HR up to at least 60 BPM. The PM will continue to monitor my heart rate and helps as needed until my heart's natural pacemaker takes my rate above 120. Then the PM just continues to monitor the heart but does not assist until my HR drops below 120 and then only if the PM detects a need to help maintain a steady heart rhythm.

I'm guessing the 35% number you quoted is ejection fraction. If that is ejection faction, a normal heart has an ejection fraction of about 60%. So that means your grandfather's heart is pumping less blood than what is considered a normal EF. If you compound that with a slow heart rate, then you can see why he is having trouble doing anything physical. If he does have a low heart rate, the pacemaker will speed that up which means more blood will be pumped resulting in him feeling less tired and being able to do more without being so fatigued.

I have read about pacemakers that have a third lead and are designed specifically to increase a person's EF. However, I have no idea what the criteria is to make the determination that such unit is needed.

As for the defib unit I have seen people say exactly what you described, almost knocks them down when it fires. There are two pluses there. A) It doesn't have to fire very often. 2) When it does fire it probably saved the life of the patient. You should discuss this concern with his doctor as his defib unit may be no more than a precautionary measure.

I wish your granfather the best.

Smitty

Thanks

by mest281 - 2008-07-31 10:07:03

Thank you everyone for your comments. I am passing them along to the family and it has really helped. To Shelly...we are from texas too...how neat. I hope to continue to hear more from everyone and continue to learn. I have requested more detail from my mom as to what his exact condition is and what the actual name and manufacturer of the device is. I will pass it along when I get it. We are in the military so we are in another state so getting info is complicated. Thanks again everyone!

con't

by shelley1967 - 2008-07-31 12:07:15

Hi its me again...... belive me our family knows exacty what ya'll are going through!!! When we first got dads, we were scared to death. We could not find out much anything from drs or any of the health people.. so we started searching internet alot... many nites not sleeping trying and trying to find out as much as we could . Yesi know exacty what ya'll are going through... Didn't find this web site until April 2008,,, Lord i wish we had found it alot sooner,because there are so many people here to help!!! ALOT!!!! So like i said in the earlyer post come into the pm chat room at nite there are many many people there to talk to.. I will be one of them.. So please try not to worrie because you have found a site that will help and support your family !!!! take care! Shelley1967

my dad has one!!

by shelley1967 - 2008-07-31 12:07:34

Hello! My name is Shelley and on the web site its listed as shelley1967.. Our dad had to have one put in about year and half ago.... both pacemaker and delif.... He has CHF and is 73 years old. He had three leads . Dad heart is workingabout 15% and we are hoping we can get it up a litle bit more better.. First all we had one put in around May of 2007 and just had anothere one put in June 2008. The first one was not what dad need so we had to have another one put in... so far he is really doing good... If you need to talk about it i try to get on the pm chat room at nite, so come on in it and we will talk..... We are from Texas .. Take care and hope i can talk with you!!!! Shelley1967

You know you're wired when...

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Member Quotes

My eight year old son had a pacemaker since he was 6 months old. He does very well, plays soccer, baseball, and rides his bike. I am so glad he is not ashamed of his pacemaker. He will proudly show his "battery" to anyone.