Want to be there

I am looking for someone to talk to about the affects that having a pacemaker causes. I am wondering what is considered normal behavior... with pain, fatigue, moodiness, isolation... And mostly what can be done by me to help and support the one I love that has a pacemaker.

6 Comments

normal

by Tracey_E - 2012-12-05 08:12:42

There isn't really a normal! Some feel great and move on and forget it immediately. Some go through a period of adjustment and healing, both physical and emotional, it can be a few weeks, or a few months or more. It's common to feel isolated, esp if the person is young because they likely don't know anyone else who has been through the same thing. That's when coming here can help, see that there are a lot of us out here who have been through it and come out thriving.

What's not normal is pain that lasts more than a few weeks, or when a bit of the blues turns into depression. Both of those need professional help.

What's also normal is for the pm to need some tweaking, esp if the patient is young and active. Pm's are often set for someone sedentary so it may take a few tries to get the settings personalized for someone active.

Best thing you can do is just be there. It also helps to understand why your loved one got the pm and how the pm helps. Check out the videos on St Jude's website, it has really nice explanations
http://health.sjm.com/arrhythmia-answers/videos-and-animations

Questions:

by donr - 2012-12-05 09:12:41

Kimber - how about some help answering your question about how long a piece of string is.

How old?
How long since implantation
What specifically is /are the pain issues he is having?
What did he get the PM for?
Have you told the surgeon about these problems?
How active was he before the implant?
Did he REALLY want tie PM?
What was his attitude about getting the implant BEFORE it happened?
What is the surgeon's attitude toward him & the entire procedure?
Does he act like he WANTS to get better, or does he fight the problem & resent your attempts to help?

You asked what was "Normal." A better question is "What is common?" Normal implies that nearly everyone experiences the effect. Common can imply that it happens w/ a measurable frequency & not everyone experiences it.

Don

Don

by Kimber - 2012-12-06 12:12:50

I did think about that after I had sent the message, you are correct, I am looking for what is common. I didn't mean any offence, I am just looking to help.
He is 37 and has had his pm for about 4 years. He has his pm to control the rhythm, forgive me if I sound ignorant, this is a learning process for me, when his heart rate drops below a certain point, his pm "kicks in". He says this is a noticeable change. Usually when this happens, it will happen for a few days. He is extremely exhausted and moody, or on edge and always tells me that there isn't anything I can do to help. (Which is why I am here, hoping to find some help) He describes his pain as cross between his heart having deep painful hiccups and a sharp gas bubble pain under his sternum. He said it is more of an uncomfortable pain overall. We have only been together a year, so I could not tell you what his personality was prior to his pm. He was at the end of a long, nasty divorce when the device was placed. Over the past year, he has only gone to visit the surgeon once due to finances. This was because he was down (very lethargic and in pain) for about a week. He refers to his surgery and the surgeons with a blase kind of attitude, he obviously isn't much of a talker if I am on here trying to find help... I am not sure how the surgeon's attitude is towards him or the procedure. He was a "guinea pig" he says, He has a new type of pm in that they are using him to try out. He said that the battery life was to be around 10 years and the Dr told him at his last visit that with as much as he has had to use it since it was placed, it will have to be replaced around the 6 year mark. He also tells me that he doesn't think that they (the Dr's) are able to adjust it correctly for him. He says that he went in for multiple adjustments after the device was placed. This again is one of those things I am foggy on. We have made quite a few big (but good) adjustments over the past year. He does act like he wants to get better, but does not have the knowledge or resources on how to make things better. He states that he is mentally and physically in a better place then he has ever been. Everything is good, its just about every couple months we go through a period of time where his pm seems to be acting up or not working correct, where he is in pain and extremely tired. He does not know I am on here, but would not be resentful of me trying to get help. I just think he is at a loss on what to do.
If you have any other questions, just let me know. I appreciate any help.

Pain from the pacemaker after 4 years...

by jenny97 - 2012-12-07 06:12:13

Is not all that common, although it does happen. It sounds like he needs to be evaluated by an EP specialist or talk to an experienced PM tech. A lot of symptoms that occur after a PM placement come from settings that are not optimal or from the condition that caused the PM implantation in the first place.

In general, and depending to some degree on what the PM was implanted for, pacing by a PM should not be painful. If it is, the voltage may be set too high or other settings may not be optimized for the individual.

In addition, sometimes PM hosts get sensations of irregular or hard heart beats (PVCs) which can take your breath away and be really scary and annoying. Although irritating and scary, they are generally not dangerous. And they show up on a PM interrogation, so the dr. or the PM tech should be able to identify them if they are causing the issue.

The emotional side of the PM can be difficult, as others have said. I think it's sometimes tougher for guys who feel like they used to be invincible and now they're not or who have difficulty identifying and expressing their feelings. It can sometimes be tough if you get a PM quite young because you feel like an anomaly and don't have a lot to relate to. I was in my 20s when I got my PM and am now in my mid-thirties, so I can relate to some of those feelings. But getting help (talk therapy), exercise, and meeting other people (this site is great for that) who have experienced the same or worse, can really help.

Anyway, I don't know if any of this is helpful, but I wish the best for you and your loved one.

All the best,

Jenny

You're a great support

by bloc_de_branche - 2012-12-07 06:12:18

Hi,
I want to first say that I'm really glad you came to this site to get some advice and support for your loved one. You show how much you really care for him and that you want to help him for the long term with his health and well being.

I have a pacemaker since Oct 2010 and it was a hellish experience- One that changed my life in a few good ways but in a lot of bad ways in the beginning. Like Don says, there is no 'normal' just what is common and for the person with the pacemaker and the family of those who get it, we have no clue what that is in the beginning. NO ONE told me or my husband the emotional of psychological effects of the pacemaker would be. We got the standard 'you will have some bruising, pain and discomfort for about a week, after a few weeks you can return to normal activity blah blah'. And for some people, that's exactly what happens. They have the surgery and they poof forget about it and go on with their lives or they feel so much better its a wonderful thing and they praise the day they got it.

I went through (and I am still working through) a very deep disturbing depression as a result of my insertion. And I did all I could to hide it from my husband- who complained I was not the same person, I was moody, and irritable and I gained weight .... he has been very supportive considering the crap I have thrown his way as a result of all this.

What I can say for you is that you took the biggest and best step by coming here, and posting for advice. I suggest to you, read some of the posts where people have recovery problems, there is even a support group thread on here that might do well.

Perhaps I would bring it up with him that while doing some research online to better understand what he must be going through, that you came across this site and that you saw lots of great posts and info. Maybe if he reads some of these he can perhaps open up on here to us about what he is certainly going through and receive the support I certainly did when I first joined.

Also, it is very very important that he get his device monitored from time to time. Pacing episodes happen, its what the device is there for, they do exhaust you, they do make you a bit pissy if they go on for a while because it's like Animal from the Muppets thumping in your chest and if he is like some of us, we feel every single pacing with total clarity.

I hope you can gleen a bit of help from my comment, sorry if I have rambled on a bit, it's the silly writer in me coming out.

Best of luck and if you want someone to talk to, I would be here to talk to you, just inbox me and we can set something up on Skype or whatever.

Take care,

Answers

by donr - 2012-12-09 05:12:54

Kimber, I guess after asking those questions & you providing the answers, I owe you a response of some sort.

You are correct about the common part - what has happened to your love is not normal, but is common - & very real & very tough to deal with. You have picked a tough row to hoe.

If he's had the PM four yrs, now, someone should have solved this problem for him - but it takes his input for them to act on - otherwise they have no idea what is happening. Do not apologize for your lack of knowledge - we all start w/ zero knowledge in this PM game as either the Host or the supporting family. A credit to you - you are trying to understand what is affecting him. A significant number of families don't have a clue what's going on & just cannot get emotionally involved in the situation.

Actually, a PM does not wait till the heart rate drops to a certain level to "Kick in," as he puts it & you have taken taken to accept. Briefly, the PM monitors EVERY beat of the heart & has no idea what its rate is. MOF, there is no such thing as a Heart Rate. Each & every beat is individually timed & created by the heart's master, natural "Pace Maker," the Sinus Node (SA). That is an amorphous glob of special tissue in the top of the heart that has a timing capability - just like a kitchen timer - & generates a "Wave" of electrical signal that starts the individual beat by telling the Atria (Top two chambers) to contract & force blood into the to lower chambers (The Ventricles). The same signal travels DOWN the center wall of the heart through more special tissue that delays it a bit in order to allow the ventricles to fill w/ blood. The signal hits the AV Node in the lower section of the heart & it generates a signal that makes the ventricles contract, sending blood to the lungs (Right Ventricle) and the whole body (Left Ventricle). All this action is controlled by electrical signals that must be precisely controlled (Timed) & created. The actual contraction of the heart muscles is performed by electrical changes that make the muscles contract. There is even a piece of time when the muscles are all returning to the appropriate electrical state to be ready for the next beat. All these events are individually timed by the two nodes (SA & AV) & the delay line between the atria & ventricles. That the heart seems to have a "RATE," implies that there is some master electrical signal that is continuously operating that the heart reacts to - nope - all of it is individually timed by the nodes for every beat. That it seems so regular to us from the outside is a testimony to the reliability & accuracy of the timing nodes. (Accuracy means that the heart repeats its signals with very little variation from beat to beat.) Until the invention of the ECG machine in the late 1800's, we all thought that there was a heart rate - that machine discovered that the beats are individually timed out for control.

So, knowing that now, what does the PM do? Well, it sits there & monitors the timing of every event the heart performs. The PM has in its little digital memory how long these events should take & if they don't occur when expected, the PM generates a signal to make it occur. F'rinstance - the PM senses that the signal has been generated by the SA node for the Atria to contract; it starts its own countdown & if the Ventricles have not contracted when its memory says they should, it sends a signal to make them so so. If it does not detect an SA signal at the correct time to start the next beat, it generates one for that, also.

The PM is not looking for the heart rate to drop - it is looking for some little snippet of timing to be wrong or missing to act. The times stored in its memory are based on what they are ideally for the heart to function at a certain "Rate." Now the PM has the ability to function at more rates than the base rate stored in its memory. It has a program that tells it at what "Rate" the heart is beating & it modifies its times accordingly, so it keeps the heart working properly across an entire spectrum of rates as the body's demand for blood increases w/ activity.

That's the simple explanation of a PM - it can do many, many different things as the heart functions.

Now he should NOT sense when these things all happen. I've had my PM for nearly ten yrs now & have NEVER sensed it doing a thing & I'm paced nearly 100% of the time in the Atria - my SA node is "Sick." They call that a "Sick Sinus Syndrome." No relation to the cavities in the head, but to the nodes in the heart.

This tells me that he either has something wrong that the PM cannot control OR - the PM needs tweaking. Not at all uncommon!

Yes, there is something you can do to help. Geteth his suffering buttocks to the Cardio & have him check & adjust the PM better. More later on this action.

A mal-adjusted PM can easily leave the host exhausted, followed by moodiness & on edge. I will not try to guess which of the many adjustable parameters is doing it, but I had that right after implant & they adjusted a parameter called "AV Delay." That is the length of time the PM waits after the Atria have contracted before it sends a signal for the ventricles to contract. Might well be different for him.

As to the pain you described - that could be caused by many things & is a tough nut to crack. These pains depend partially on the individual. The moodiness is a psychosomatic effect - meaning it is a mental issue, caused by mind & body interacting (Psycho = mind; Soma = body) Not at all unusual. My psychosomatic issue was a feeling of anxiety & hyper-alertness. A simple adjustment took care of it in less than 10 minutes.

You are right to associate some of it w/ his personality. The psychosomatic effects are influenced greatly by normal personality & how a person reacts to stress & varying body events. A normally excitable person will react dramatically different from someone who is very laid back & placid.
A long, messy divorce could even have an effect on how he feels.

So, money problems - that can add a stressor that affects how he feels - big time. Sounds like he is not impressed w/ his surgeon. Not a good sign. That means he does not tell the surgeon everything on his mind. He as muchas says that he does not think the surgeon cares about him or is capable of helping. You have to help him at this point. Do you go with him to appts? if for reason other than to give moral support. That way you could evaluate how they interact & draw your own conclusions.

If he has a "Try-out" PM, they should be very interested in him & progress & want to see him frequently at THEIR expense! Something here does not pass the common sense test. Another reason to accompany him to find out for yourself what is going on.

Battery life - no big deal!!!!! Batteries last as long as they last & that depends on how much they are used. NO WAY a surgeon can tell you before the fact how long a battery will last. So it only lasts 6 yrs - it may be pacing him a lot more frequently than he thinks - sounds like near 100% based on a 6 yr prediction at this point. The PM diagnoses every day how long its battery will last. It does a lot of self test stuff, but the battery is most important. Mine lasted 7 yrs - but I am paced nearly 100%. Again - NO BIG DEAL! Unless, of course it is malfunctioning - & the Pm will tell you that, also when it is downloaded of its information.

If he already went in for multiple adjustments, that tells me that it still may be mal-adjusted.

Key statement in whole narrative - he acts like he wants to get better! That is most important. There is an old saying "You cannot want something for someone else!" How very true. BUT ...you can help them find the way through a problem if they want to get through it. Sounds like you just might have that kind of symbiotic relationship going here.

If he is wiling, but cannot express what is going wrong & you can help him verbalize it, you are riding winning horse. Everything in your last para is positive.

Let me fix your last sentence to read that you would welcome any help WE can give you based on YOUR questions.

Ask & we shall answer. Someone in here will have an answer for you.

You have your work cut out for you.

The best to you in your quest.

BTW: that was a great narrative you gave in response to my questions - got a pretty good idea what is going on.

Don



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