Lots of questions

[Mickenzie]

Hello, thankyou for this forum, I think it is great the way you help poeple! I have several questions but first I'll give you my history. I am and 18 year old female. I had an endocardial pacemaker put in when I was 11 for congenital CHB. In Sept. 99 I had a laser lead extraction. During the surgery the laser lacerated my SVC from "well above the azygous vein near the innominate vein, onto the right atrium." They preformed a sternotomy in the cath lab, then tansfered me to the OR and put me on bypass to do a pericardial patch repair. They also closed a 4mm PFO, removed my edocardial leads, and placed an epicardial pacing system. After the surgery I had pneumonia and a 655cc plural effusion that required thoracyntesis. I had an echo soon after surgery and my cardiologist said everything was fine, but 1 month later it showed that my heart wasn't pumping as well do to emergency cariopulmonary bypass, and "getting the **** kicked out of me during surgery." I was put on Digoxin and Captopril. I've had several echo's since then and it has been improving up to EF 44%. But after my last echo my Doctor siad that my EF was between 38 and 56, the really couldn't tell. He said I was fine and to come back in 3 months. They did the echo first with my pacer on, then again with it off. My question is, how can you get such varried results? I know that the way the heart beats on and echo is different when you have a pacemaker but, How does the different activation path caused by the pacemaker change the echo results? Change the EF? Could you explain to me how epicardial leads are replaced? Another question I have is about noise reversion. My pacer goes into this mode when I touch my shower faucets, go near pool lights, touch a pan on the stove, and several other documented places. My doctor has throughly investigated this, sending my pacer nurse, a local rep from the company and Larry Selznic(a guy for LA that works for the pacesetter comp) to my house with all of their equipment. He also siad the asked a bunch of other doctors at the NASPE meeting. We know what is going on, but the only reason my Dr. can decide on is that my unipolar leads are acting like a big antenea. Do you have any ideas of how to program around this? It isn't dangerous because I have and underlying rhythm of about 50, but it is kinda annoying. And I don't see how if my pacer "is function right" how I am the only one in the world that this happens to; I know I'm not the only one who takes a shower, or touches the refridgerator! Thankyou so much for your time, I really appriciate being able to get my lingering questions answered!

[Cleveland Clinic, MD]

Dear Mickenzie,
Wow, that's quite a story.  In one regard you are very lucky just to be here writing.  Of course on the other hand you have been through a lot to get here.  I'll try to address you questions as best I can but some of them I think will have to go to the "Unknown" column.  First the EF.  Ejection fraction is the percentage of volume your heart pumps with each beat.  It is usually about 55%.  The measurement with echo is somewhat subjective but is usually able to be classified as "normal", "mild dysfunction", "moderate dysfunction" or "severe dysfunction". It sound like yours has improved from severe to the  mild to moderate range but 38-56 is a wide range and I'm not certain why your doctor was unable to give a better estimate.  The pacemaker activation pattern can change the EF and sometimes serial echocardiograms are used to change the pacer programming to get the optimal EF.  

Second, epicardial leads are not usually replaced.  If they malfunction or break they are usually abandoned and new transvenous leads are implanted.  Hopefully this will not be an issue in your case for a good long time.

You third question I'm afraid will also have to go in the unknown column.  Your doctor's explaination is a bit unusual but I can't think of a better one.  If anyone else has had this problem I would like to hear about it.  Best wishes to you.

[EP__]

Mickenzie,
This is just some speculation with regards to your pacemaker problem.  This is not professional advice.  

Many people experience pacer malfunction when in contact with magnetized surroundings.  For example, EAS systems (the scanners in the doorways of stores used to stop shop lifters) and certain cell phones are known to cause pacer interference/ malfunction.  Pacer malfunction also can be caused by strong static charges (which seems something like your problem).  There is no evidence that shows that either magnetic or static interference cause serious problems with the pacer's function.  Hope this is helful, and good luck.

[Just a comment about EP.]

Hi,

WOW you sound like me!!  I have had everything that can go wrong with a pacemaker ....go wrong!  I too had a endocardial pacer, that was changed to a epicardial in Jan. of 99.  I had muscle stimulation from the pacer pacing my shoulder which happens alot with unipolar leads.  Then it also caused myopotentials.  This is where the pacer would "read" my muscle stimulation and then pace me wrong.  At times it would cause a PMT which is "Pacemaker mediated tachycardia".  It felt awful.  I would get the fast rates even by leaning with my hands or putting pressure on them, and the pacer reading the "noise" from my muscle.  But also I had a pacer that did pick up outside noise.  The doctor changed this by making the settings not so sensitive to reading the signals in the atrium.  Then I had even more trouble and had to have another new pacer placed and this time they gave me 2 more leads, sort of "extension leads".  So now I have a new pacer, (my 3rd in 2 years) and 4 leads.  Two epicardial going up to my right shoulder and then the other 2 leads going across my chest to the pacer. I was told they act like big antenas too.  I still get the shoulder jerking stuff on the left side where the pacer is, and I now get jerking in the right shoulder too where the leads are all coiled up.  I saw my pacer doc and she said that the leads are twisted up on themselves and cause this "break" in the lead insulation, and this is causing the jerking now and then.  UGH !!!  So now I am looking at another lead revision to replace the leads and we hope we can wait til after the New Year.

But, in your case, it is proven that like doc CRC said, that EF can be changed by the pacer settings.  The pacer settings are the time that it takes the heart to beat.  Also it times the way the valves open and close to let blood in the different chambers of the heart.  If this timing is off, then you do not get the ventricular filling needed to send the good blood out of the heart to the head and other parts of the body.  So you do get a "Pacemaker syndrome", and this can cause low BP and EF changes.  The feeling you have when you reach for things, may just be that when you move certain ways your pacer reads the muscle movements, and this is what you feel.  It may just seem like it happens when you touch the fridge or what ever.  This is just my opinion, but it may be worth checking out.  It sounds like your doc is keeping up on things for you.  You can mail me at   ***@****  if you want to chat more.