New Here...worried about mom

Hi all,

My 70 year old mother had a pacemaker implanted six days ago and in currently in the hospital with many strange complications. The doctors are puzzled about what is causing her symptoms and I am quite worried at this point. I would greatly appreciate any information you can provide.

Her main complaint immediately after leaving surgery was that she felt an electrical type of sensation throughout her body. She is also very weak and feels breathless. After having normal liver and kidney function pre-surgery, she progressed to having impaired function of both organs. The liver and kidney function results are still abnormal, but getting better slowly.

The doctors have run many tests and the device appears to be in place. They mentioned that one lead may need to be readjusted, but don't think that is the cause of her symptoms. Has anyone experienced anything like this after your surgery? Any thoughts?

Thanks so much!

2 Comments

Mother & PM Problems

by SMITTY - 2010-12-13 11:12:01

Hello Shellbell,

I take it this is your first visit to the pacemaker Club, so let me say welcome.

The following is long, longer than necessary I'm sure, but I have lived through something very similar to what your mother is going through and maybe some of what I say can help you get help for your mother.

I got my pacemaker at age 71 in 2000. It caused me similar problems with electrical sensations in my upper body. Fortunately they did not extend further below my belt. I didn't have any organ dysfunction, at least none of which I knew about. It took a long time but I was finally able to lean that my problem was nerve stimulation caused by the impulses generated by the pacemaker to make my heart beat.

I got a PM for sinus node dysfunction which was causing me to have bradycardia, or a heart rate in the low to mid 50s much of the time. I had no other symptoms such as weakness or passing out.

With that said I have a suggestion if it can be done. My suggestion is based on the assumption that your mother got her PM for a low heart rate and is actually an on demand device. By on demand device I mean a pacemaker that monitors the heart continuously but steps in to help out only when the heart rate drops below the low set point on the PM. (There is no standard low set point and the one a person has is determined by what the doctor thinks is best for the patient.) If that is the case, if your mother's PM was to stop functioning her heart function would just return to what it was doing before she got the PM.

Having her doctors say, or imply, the PM is the cause of here problem is the most common things we run into with PMs that are causing a problem. But I would suggest that you try to get her Dr to turn set the low set point on the PM to some point below what her low heart rate was prior to getting the PM. In my case that meant getting a low setting of 30. Within an hour or so after that low set point was established my "electrical shocks" (as I called them) ceased.

Just a little more to maybe clarify a couple of points. My shocks started after my first PM checkup, which was three weeks after it was implanted. Some changes were made in the settings and with in 15 minutes I started getting shocked. Since my PM is an on demand device, they were not constant which was good and bad. Good for me because I don't think I could have tolerated the shocks constantly. It was bad because the doctors could not understand why I had them only some of the time.

I lived with these things for about 2.5 years and finally demanded that my PM be turned off. I did not know what may happen, but the life I had was a living hell and I didn't think things could get much worse. I had by now quit going out in public because when I started getting shocked, if it was a run or 10 to 15, or more, I would react as if I was having a seizure. This was very disturbing for my wife because she knew what was happening and could do nothing to help me.

The Dr objected but complied with my request and almost immediately I was no longer getting shocked. A couple of years later I was persuaded to have it turned back on to see if it would help a SOB problem I had developed. It didn't help the SOB (it took a stent to do that) but the shocks returned almost immediately. By then I had a Dr involved that knew these things could happen and he suggested that I have either the lead to the lower heart chamber relocated or that I get an injection to deaden the nerve. Since that lead had been in place about 5 years and to move one after that amount of time can be a real challenge, I elected to go for the nerve deadening. That worked but it caused problems that I will never get corrected. But as bad as they are, it is better than being shocked daily.

Now last but not least, if your mother is unable to get the help she needs from her current Dr. please try to get her another Dr. Her problem is real and it can be corrected.

I wish her the best,

Smitty

Thank you...mom even more ill now

by Shellbell - 2010-12-15 06:12:29

Thank you for your replies. Smitty, I was very interested to read your story. My mom is still in very poor condition. She has fluid around her heart and blood markers that suggest congestive heart failure. She has also just been told she has pericarditis. One week later and she is still in the hospital. I am still very worried! I had no idea it was possible to have this outcome from the surgery! :(

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