Never ending problems!

Hi guys. I only just found this site after having lived with a PM for 13yrs! I'm 23 and have had 4 pacemakers in 13 yrs because of problems! My last one had to be changed because I had pacemaker syndrome and as a result put in a second lead as I only one. My body then rejected it and had to have emergency surgery to place it under the muscle instead. Now what has happened is that for some reason (why i dont know) even though they have fitted me with a 2 chamber PM they cant turn on the ventricular lead so theres no differnence as before so whats the point!!!
Anyway! The problem I'm expereiencing and have done for about 2yrs is that approx once a week something weird will happen. It feels like my heart beat (or PM beat) is thumping so hard its gonna burst through my chest! And while this is happeneing it feels like I'm not getting enough oxygen to my lungs at all and is really uncomfortable. It used to only last about a minute but now its lasting up to half an hour. I've explained this to my tech and she cant see any problem and has sent me away with 24hr recorder thing but of course....nothing happens when ive got that on!!!
Is anyone else experiencing this? Do I keep hounding them about it or just live with it?

6 Comments

Never Ending Problems

by Pookie - 2009-03-11 04:03:44

Hi Rachael and welcome to this great little club. Here you will find oodles of support and information.

I am sorry to hear that you are having difficulties with your present pacemaker regarding the wires. Hopefully someone will be able to figure out a solution and soon.

Your "weird" feelings once a week: I too have what I call spells. They are so hard to describe. I have occasions where my heart feels like it is sore, that it has been overused like a strain, like it's taking an effort to beat, but yet all the beats are very forceful; then I feel a slight shortness of breath as if I had just ran up a flight of stairs or my 8 pound cat is sitting on my chest (like something is over my nose and mouth and its hard to breathe) ... I have mentioned it numerous times to my doctors and techs too, but their standard line is: "Your pacemaker is working fine." I also suddenly become extremely tired and woozy, I could fall asleep in the blink of an eye when I have these "spells", which by the way, for me, are daily.

I am sure the doctors think it is stress when they see a 46 year old female walk thru the door and perhaps it could be stress, but I sure would like to find a definitive answer. I am the type of person that HAS to know the "whys" of everything!!!!

So, once again, on March 30 when I see the tech and cardiologist I will bring it up .... this time I'm going to be asking for an echo and stress test and a Holter for more than 24 hrs, cuz it has happened to me too...you wear the Holter and it's just the time that these spells do NOT occur...then they think I'm nuts for sure.

I also had a Heart Wall Motion Study to find out my ejection fraction, so perhaps those results may help me find my answer. My EF has always been around 66%, which I've been told is excellent.

I'm glad you found us. Hopefully by sharing information and supporting one another we will get through all this stuff and perhaps even find some answers!!!

There is always hope.

Pookie

Are you dependent?

by bobad - 2009-03-11 04:03:57


Sorry I don't have any answers, but I do have questions!

Why in the world doesn't your ventricular lead work??? Is it the pacemaker, or did the lead detach?

For your sake, I hope it's in the PM itself, but with a sub-pectoralis implant, neither are exactly ideal.

Have they interrogated your PM yet? They should be able to see exactly what's happening while you experience the feeling of oxygen deprivation... even if the 1 lead or channel isn't working.

How long have you had the PM under your pectoralis muscle, and how is that working out?

Did they remove the old "rejected" pacemaker and leave it out for a while before re-implanting? Reason I ask is,,, my EP told me they like to wait as long as possible before re-implanting to let any possible infection totally disappear.

I experienced PM syndrome on 2 occasions. Once I completely fainted, and the other time I wish I HAD fainted. I had dual leads, and they fixed it, thank goodness.

I also "rejected" a PM (actually, I rejected 3 in short order). Thank goodness I'm not dependent, but I guess you are dependent.

Wishing you the best of luck, and please keep us posted on your situation!

Heart Problems

by SMITTY - 2009-03-11 06:03:25

Hello Rachael,

Welcome to the Pacemaker Club.

I can't answer your questions but possibly I can offer a little food for thought.

Palpations can be caused by a number of things, but a very common one is medication. I know of two classes that are almost a cinch to cause palpations and those are all beta blockers and all calcium channel blockers as well as anti arrhythmia medications such as digoxin. You don't mention any medications but if you are taking one of the above, or any other for your heart problems I say think back and try to recall if there have been any changes such as kind or dosage.

I will venture a guess that the pacemaker is not the cause of the palpations or hard heart beats.

As for the new ventricle lead not working I can think of four reasons this could happen and I'm sure there are many more. One is somebody does not know how to make the optimum settings for you on your pacemaker. Two, the lead is not connected to the pacemaker properly. Three, the lead is not attached to the heart wall as it should be for some reason. Fourth, when installing the lead it was broken or the insulation was damaged. Broken or damaged insulation on a broken lead can allow the impulse from the pacemaker to be expended into the body at the point of the lead damage, therefore, no impulse is reaching the ventricle. The tech should be able to see this during a checkup, but then, not all techs---, enough said here

Like I said, possibly food for thought.

I wish you the best,

Smitty

Lead not working?

by BillMFl - 2009-03-11 11:03:43

Not sure what you mean. The PM Tech should easily test the lead impedence and conductivity. Lose or broken. Did you mean the lead is ok but still doesn't pace you? It could be anchored in scar tissue or fibrous tissue that acts ac an insulator. As for the pounding, there are numerous possibilities. For example, an out of sequence contraction working against a closed valve. Or an extra strong stroke due to an adrenaline rush. Could also be related to your previous problem on the pulmonary side. Not something a PM Tech (and certainly not me) could dx. If I were you I'd make a lot of noise to my EP or Cardiologist for more testing. There are other devices that record much longer than the Holter Moniter.

I agree with Bill and Smitty

by ElectricFrank - 2009-03-12 01:03:41

You need to make a lot of noise over this one. Either they don't want to bother with correcting the problem or are incompetent.

My suggest is first to ask to be seen by the pacemaker manufactures rep. They are very competent and can easily find why the ventricular pacing can't be turned on. Be sure to get it clear with the doctor that the rep is to be free to give you a unbiased report. The rep is ethically bound to follow the docs instructions so it is important to get this one clear.

If this won't work, then ask for a second opinion by someone outside the current docs office.

The non functioning second lead is a sign something isn't right. It not only isn't doing its job, but could even be causing your symptoms.

The bottom line is that you are getting a runaround and it is up to you to get aggressive about it.

frank

Thanks guys

by Rachael - 2009-03-13 07:03:55

Thanks for replying to my post. As I've never known a 'normal' life I've always just put my trust in my techs etc and never know whether I will just have to put up with not feeling well or not. So I really appreciate your help. You guys all seem to know so much about pacemakers and my knowledge is so limited. I dont know the first thing about them or why I have a pacemaker! When ever I ask they come out with all this jargon and dont seem to be capable to speak in english so I've given up asking!!!

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