first pacemaker

Hello, my father has just had his first pacemaker fitted 4 weeks ago at the age of 76, all i know about it is its a 3 wire type and has a combined defribrillator, the problem is that he actually now feels worse, he has been back and had it adjusted but still feels worse than before he had it fitted, my question is, is this normal, are pacemakers complex to set up, his doctor has mentioned he may have to switcht it off, has anyone else experianced this kind of problem, our family are obviously very worried about him any information you can provide would be great


7 Comments

First timer

by joy1 - 2008-05-23 04:05:40

Hi blue,

First, welcome to the Pacemaker Club. This is an awesome group of people. If we can't give you answers or direct you to answers, we can give encouragement.

Your dad has a device called an ICD an Intro Cardio Defibrillator. Most of them also have a pacing component. The pacing component is for slow heart rates and the defib part is for tachycardia and or fibrillation. It is possible if your dad has three wires that he has a device designed to resynchronize the heart beat. Finding out and knowing what kind of heart condition(s) your father has would be beneficial for your entire family so as to better be able to help him and also, to understand what is happening to him. You are the core of his support network and when dealing with the medical community it is very necessary to be proactive in your care or to have an advocate.

It is totally plausible that he feels worse now than before he has his implant; be it from the device or the medications he is taking. ICDs can be complicated to set because of the number of settings involved. You would definetly benefit from finding out the make and model of his device. He should have come home from the hospital with that information as every device is numbered and registered with the manufacturer. He will eventually be sent a card to carry on his person with the information related to the device and the leads.

As for turning the device off. The Electrophysiologists really don't like turning them off. I would strongly recommend you find out why they are making that recommendation. You need to become knowledgeable about your dad's condition and treatment if your going to help him. There are so many variables. Not meaning to be mean but welcome to the new age of medicine where the patients and their support people have to become nearly as knowledgeable as the doctors who treat them. Give my best to your father and tell him to hang in there. More often than not the first few months are the roughest. Please keep us posted as to what you find out.

Joy

Thank You

by bluewoody1967 - 2008-05-23 05:05:45

many thanks for taking the time to respond to me, i will certainly get the information as you advise and let you know how the old boy is doing

1st Pacemaker

by SMITTY - 2008-05-23 07:05:34

Hello Bluewoody,

Welcome to the Pacemaker Club. I'm very sorry to hear about the experience your father has encountered. He certainly should not be feeling worse after getting a pacemaker. Of course there will be some initial discomfort from the surgery, but other than that he should not be feeling worse.

My answer to your questions "is this normal" is NO. As for the question "are pacemakers complex to set up" my answer is not for doctors that know what they are doing.

However, as in every profession not all doctors are created equal. Unfortunately we have those that have not mastered the use of the TV remote out there trying to implant and setup pacemakers. A pacemaker is a very complex electronic device, however any competent cardiologist that thinks he/she is qualified to implant the device should be capable of making the initial settings on a pacemaker.

As for that turkey wanting to turn it off, I say by all means let him do it, IF YOU THINK HE IS CAPABLE. Then go find a doctor that is qualified. Because, frankly, it does not sound like this one knows sheep dip from wild honey about pacemakers. By that I am not saying he is not a good surgeon, but not all surgeons can handle the electronics of a PM. If you cannot get another doctor, ask this one to get you a manufacturers representative to do a checkup. While those reps may not be doctors, all of these people that I have seen are very knowledgeable about the intricacies of pacemakers.

I got my PM 8 years ago at age 71. It caused me many problems and when I could not get relief I requested that it be turned off. It was (so I thought) and my problems were solved. A couple of years later I had to have it restarted and this time I had a doctor that knew or maybe just cared more, and he solved my problems permanently.

What I meant by "so I thought" was that while I thought it was turned off, I have now been told by a number of people that PM does not actually have an on/off switch. All that can be done is to set the control parameters so low that the PM will not help maintain a heart beat unless it gets very low. In my case the low setting was 30 and if my heart rate had to go below that, before my "turned off" PM would have tried to help me. At that point it would have kept beat at about 30 BPM which would have kept me alive until I could get help.

I wish your father the best,

Smitty

Thank you

by bluewoody1967 - 2008-05-23 10:05:13

Thanks for that Smitty, i know where your coming from about doctors, sound advice

hello

by Boog - 2008-05-24 02:05:43

well it seems we both are dealing with the same problem.. My dad had a pacemaker /delfi put in a year ago. Guess what ? They put in the wrong one, so now we are waiting to remove the old one and put in a new one. dads has three leads and the third lead is not where it should be , so we got kto put in a new third lead. My dad is 73. I understand what ya'll are going through . We have change doctors and have a new one now. Thank god that dad figured out that the old dr was not caring for him like he should. Hang in there we are still learning. Take care ! Shelley I am 40 years old and since all tjhis has took place with my dad I feel 90

MISTAKES ETC

by peter - 2008-05-24 03:05:14

There is no guarantee that a pacemaker will make you any better. I was warned by my EP about that before it was fitted. However it is unlikely, and the overwhelming majority of patients benefit . Some benefit greatly some no so much. There can at the moment be no real answer to your question as its early days and it may just be a matter of time and also further adjustments to the pacemaker may be necessary. Doctors do make mistakes, they are only human. A friend in the village I live in has just lost his motherinlaw as a doctor put a feeding tube into her Lung instead of her stomach. It was checked. But the hospital apparently does not know which doctor did it.I suspect it was a junior doctor as it was around the time of the changeover when all the inexperienced doctors out of medical school get their hands on the patients for the first time. She died unfortunately because of this mistake.

Thank you

by bluewoody1967 - 2008-05-24 04:05:46

thanks for all your advice, Dad was part of a "trial" where what the doctors did before they fitted the PM was to take him in and take an "image" of his heart to see the best place to put the leads, thats how it was explained to us, many thanks again for all your support

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Life does not stop with a pacemaker, even though it caught me off guard.