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heart/difibulator
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heart/difibulator

My daughter who is 35 went into cardiac arrest pulling out of her driveway last month. The only thing she had was mitro- valve prolapse with regurgitation. On the ride to the hospital they lost her beat 3 times, was shocked 5 times. They finally got her heart going in the ER but the rate was 175 beats for a couple hours. They told us that they had used every meds they could think of to slow it down but it would not and that her heart would just finally give out. In the middle of the night it started to come down. She was on a breathing machine for a couple of days. The Dr. said that she may have short term memory loss, which she does. They said it looked like it was from low potassium which was about 2.8 coming in. They did all tests found out that her heart was weak from all that and ended up putting in a difibulator underneath her breast . She had to go back in because e she had constant pain and said that they thought it was a screw in the lead that was hitting the heart. Now she has no pain and is recuperating. Everyone says something different. The ER says that if it was from low potassium they would of just did meds and no difibulator. The cardiologist says studies show that once this happens it can happen again so they put in the difibulator.I am worried to death thinking about this all the time. She does have a history of diarrhea and had a colonoscopy a couple of weeks before that. She got real sick from the prep and was afraid to eat because she gets diarrhea so much. I would just like your opinion on what you feel may have happened. She is now on potassium pills and has not had diarrhea since. We are lucky to have her here. If cpr wasn’t started right away, she would not be here.
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Avatar_n_tn
I'm sure you are overwhelmed with information as a result of what happened with your daughter.  I'm not a doctor, but do have an ICD implanted.  You made several comments in your post that I am going to guess are key to why your daughter had the ICD implanted -

"The cardiologist says studies show that once this happens it can happen again so they put in the difibulator."   -   The reason I have my ICD is my ejection fraction (EF) was low (35%).  Studies showed that people with a low EF had a increased chance of sudden cardiac death.  BTW - mine is set to fire at 175 bpm to return me to a normal / reasonable heart rate.  The study that did it for me was called MADIT II.  Talk to your daughter's cardiologist and get information on the study they referenced.  

Your second statement "If cpr wasn’t started right away, she would not be here."  describes a reason to have the ICD.  I'm not trying to confuse CPR with and ICD, they are two different therapies, but both illustrate the need to have something done quickly.  Your local EMT is not going to beat the ICD for speed if she needs a shock.

Hope this helps.

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Avatar_n_tn
You are right. I just wish I knew if it was really from low potassium or not. Her ICD is set I think in the low 200's. She has it implanted in the side of the breast. She says it bothers her alot. She can feel it under her arm, when she lays down etc. She says she feels odd because she doesnt feel people her age have them and is rare.What is ejection fraction? Did you have cardiac arrest? She had no warning signs before hand at all. Did you ever get shocked? Your right I am a bundle of questions. She has a very busy schedule with the small children and all. She is use to being on the run until late at night. Now she says that she cant make it until 10 in the evening. She is so tired.
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Avatar_n_tn
I'm sorry you all have to go through this

Was your daughter overweight?  Did she exercise?  Minor controlled exercise may help recovery *IF* they've truly isolated the cause, but definitely get a cardiologist's approval first...

I would trust cardiologists over ER doctors in general because it's their specialty...

"Only about 5% of patients with true MVP will develop significant mitral regurgitation over their lifetimes, to the point that mitral valve surgery may be required."

- http://heartdisease.about.com/library/faq/blfaqmvp.htm

You said your daughter had regurgitation, is it severe regurgitation?

If you're not satisfied with your current cardiologist's prognosis I would get a second opinion.
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Avatar_n_tn
Low potassium levels, low magnesium levels, or too high potassium levels (watch those supplements!) can definitely cause arrhythmias.

I wish you the best of luck!
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Avatar_n_tn
No, she is tiny and petite. Didn't excercise but has 4 children11,7, and twin girls 3, single Mom and never stops, is always on the go!! No the Mitro was not serious. They did a halter a few years back and said to just keep on it.Have yearly check up's etc.
I do have a question though who ever is reading these replies. I think I am not replying correctly to the person who replied to my question. How do you do that. The first person had a email link. How do you reply to a specific person who replied to you?I would of liked to ask geppetto questions, but I don't think he got my reply.
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Avatar_n_tn
You're replying correctly I think, you just type the name of the person you're replying to in the 'To' section.

Like potassium, magnesium is also crucial for the body.  From what I've read you should get roughly 1mg of magnesium for every 2mg of calcium.
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Avatar_n_tn
sorry, didn't mean to disappear on you.  I'll try to check back more frequently.  No one had asked me questions before...  Feel free to ask anything you want, I'll try to answer  Here are some answers and comments, in no particular order.

I was having problems with nausea for about 7 months or so.  Apparently, I was slowly cutting off the oxygen supply to my heart.  If I exerted myself, I would feel ill.  It got to be that just taking out the trash was enough.  It wasn't the stereotype of what we expect to experience when we think of 'heart attack.'  I was diagnosed with Acute MI due to the blockage(s) and subsequently had a triple bypass.  Five months later I had the ICD implanted due to an ejection fraction (EF)  of 35%.  

EF is an estimate of how much fluid (volume) your heart pumps out when it beats.  A normal EF is considered to be 55% to 75%.  Think of the heart muscle contracting and pumping out the blood.  It's never going to be at 100%.  There were some studies performed that showed that people with an EF of 35% or less were more likely to experience a problem where the heart is beating too fast to pump blood, resulting in Sudden Cardiac Death (SCD).  Remember the basketball player that fell over on the court and died? Same thing.  

My ICD is implanted on the left side of my chest, outside the ribcage, just below the collar bone.  It was more of a preventative thing as my EF was on the border.  No, I haven't been shocked yet and with any luck it won't happen.  Your daughter shouldn't be surprised if it takes a while to get accustomed to having the ICD.  Mine was implanted 09/05, and there are times it gets in the way.  Nevermind that I'm lefthanded...  Sometimes the seatbelts bother me when I drive.  There are some small covers that you can get to go over the seatbelt to add some cushion.  I have used a small pillow occasionally.  Sometimes it gets a little heavy, not that it is all that big.  

Don't worry too much about electrical interference and the ICD.  It's shouldn't be a big concern but you do need to pay attention.  The phrase 'don't lean, don't linger' is one to keep in mind.  Some stores have the sensors when you exit to see if you have a 50" plasma TV hidden under you jacket.  Just walk through them normally.  The manufacturer of her ICD should have a web page or two with the guidelines.  Mine in from Guidant - now Boston Scientific and they have some pages on living with your ICD.  Try this page if you haven't seen it:

http://www.bostonscientific.com/templatedata/imports/HTML/lifebeatonline/resources.shtml

Regardless of who manufactured her ICD the page will have some good information.

Re: your daughter getting tired - is she on any meds?  I'm on a handful to lower my BP, thin the blood, etc.  It can take some time to get accustomed to the drugs and for the doctors to get the levels to where they need to be.  

Re: her age - After I was told I needed an ICD, the first person I encountered that had one was a young lady who had passed out in her kitchen one day.  I don't remember what her diagnosis was, but the end result was getting the ICD and some meds.  As you visit some of the message boards I think you will find people of all ages with ICDs.  

Check with her cardiologist and some of the hospitals in your area to locate a cardiac support group.  I go to one in Voorhees New Jersey and it helps to meet other people in similar situations.  The topics may not necessarily apply but they are always interesting and educational and it's a great group of people.

I hope this helps.   I wish you and your daughter well and please let me know if you have any other questions.



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Avatar_n_tn
No, you didn't disappear. I just wasn't sure that I was replying correctly to get to a certain person. I get an email, and wasn't sure if you did also when I replied to you.One of the members had her name where you could click on it and it would send it directly to her, so Iwasn't sure. You all have been very helpful answering alot of unanswered questions for me. Thanks alot!
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Avatar_n_tn
hi would just like to ask a few questions,ive currently got hypotrophic obstructive cardio myopathy, and had it since both as so as my mum,and six of my siblings.the cardiologist says i need to have a difibulator as i am at high risk of having a cardiac arrest in the next 3 years,and i was wondering if anyone has 1 and what does it do to help? my mum has a pacemaker and is currently awaiting a heart transplant, and my brother has a difibulator,but doesnt like to talk much about it.
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Avatar_f_tn
Hello, I thought I'd chime in to see if I can't help out a little.

Kuda: I am 34 and just had an ICD implanted in March. In my case, I fainted, which led to almost every cardiac test there is. The result was that I am at risk of cardiac arrest. So, tell your daugther she's not the only young person with one of these. I felt the exact same way about being too young. Although rare, they even put these devices in children sometimes. It takes a while to adjust. Most people I know who've had them for a while say that by a year you don't hardly even think about it anymore. I'm feeling much better about mine after 3 months. I also have two young children (2 and 10 months) so know how frustrating it is. I hope they told her not to do any lifting for 6 weeks. I belong to an Internet support group for people with ICDs which is very helpful! The link is http://www.icdsupportgroup.org/   Also, if your daughter or you need any moral support, feel free to send me a message anytime. I'm also happy to talk over the phone! It sounds like little is known about her overall cardiac health. If it hasn't already been set up, a visit to an electrophysiologist and/or cardiologist sounds in order to see if any other treatments are necessary and just to find out what is really going on!  God bless!

Kuda: ICDs can serve more than one purpose. Some people have them simply to work as defibrillators with just one lead connected to the (right? correct me if I'm wrong doc) ventricle. Many (myself included ) have a second lead connected to the right atrium in order to funciton as a pacemaker when needed as well. There are some who have three leads for further pacemaking needs. Everyone's device is set specifically to meet their individual needs. Some people go years without ever being shocked, others get shocked more frequently. It really depends on what's going on with your heart. I have not yet been shocked. I know one woman who's had an ICD (or three) for ten years and hasn't been shocked once. When you get shocked from what I understand it can be painful, but more so it's just frightening. The ICD is difficult to adjust to psychologically. But when you think that it may save your life, I think it's definitely worth it. For me the drawbacks are that I can't sleep on my left side (my device is implanted just under my left collar bone) because the device rests on I don't know what and causes some mild discomfort. Secondly, it's a constant reminder that my heart isn't quite normal. Third, maybe because my scar is still pretty fresh, but everytime one of my little darlings bumps my scar/device area, it hurts. Other than that, it's no big deal for me. At first I resented it, but now I find that I have less anxiety because my ICD is there. Good luck and God bless!
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Avatar_n_tn
i recently had a defibulator implanted 3 days ago i am 32 yrs old i am afriad of the shock can you ask your daughter how bad it is and that im glad she is doing fine sounds like we have same problems best of luck to you and your family
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Avatar_f_tn
I thought I might chime in here to give you some reassurance since this is such an old topic that the others might not still be active members.

I had an ICD implanted in January 2009 so I know exactly where you are coming from. I was quite anxious for the first few weeks about the shocks. I still haven't received one yet (yippee) but I do remember the ones I was given during implant testing. At the time I thought the doctor was just stapling my incision shut.

I was given sedation but not a general anesthetic so I was aware of a lot of the implant. Honestly its probably not as bad as you are imagining. It does hurt (but not unbearable), but only for such a short split second that by the time you say ouch, its over. It's not like stubbing your toe and the pain lingers, with an ICD shock when its over its over. When the ICD fires the shock does go through your muscles so it gives you quite a jar and can cause you to jump and this is surprising and gives a strange feeling, but again, it is so short-lived that by the time you think about it it is over.

So don't spend too much time worrying about the shocks... they are designed to save you not hurt you.

There is an excellent online ICD support group mentioned above www.icdsupportgroup.org filled with supportive people who are always willing to listen. I'm in my 40's but there are many in the group who are in their 20's and 30's. So join... you won't regret it... and before you know it you will be comforting others who are feeling what you have felt.
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Three weeks ago I received a Medtronic bi-ventricular implantable device which serves as a pacemaker and defibrillator. I have CHF. The surgery went well but at least twice the doctor ordered more sedation because I was sensing pain. I had to take a strong narcotic for the pain the first week after the implant but thereafter felt ok. There is a bump and still some swelling at the ICD site, but there was no bleeding or oozing at the ICD site and I didn't get a fever.  I will see the implant doctor this Monday and am getting ready with a list of questions.  The device will pace my heart and hopefully will not have to use its defib function.
I do have several concerns:
1) How long will the battery last?  Will regular physical exercise shorten the battery life, prompting a ICD replacement earlier than the anticipated 4-7 years? I do cardio rehab   3-5 times a week and can take daily long walks with the dog.  
2)  I have been reading about the Sprint Fidelis leads recall and the high risk (death) during extraction for replacement of the cables. Before the implant prodecure I asked the nurse practioner to identify which device I was getting. The nurse assured me that they no longer use the recalled cables. Should I still have reason to worry?
3)  I do my own yard work and landscaping. Will I have a problem with an electric hedger and other similar machines. I am a lefty and the ICD is on the left. Is it wise to crank the gas mower with the left arm?

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