Still trying

How long does it take to get past the idea of having a PM installed? I had my PM installed on 3/30/09 so it is still pretty new, but I am no closer to accepting it. They are saying now that my pacer was set too sensitive because even if I laugh to hard, my pacer doesn't detect the heartbeat and creates another one causing me to be in arrhythmia almost all the time. Does it get easier to accept when it is set right?

8 Comments

Acceptance

by Hot Heart - 2009-04-06 01:04:47

Hang on in there, it shoudnt be long. I was devastated when i got mine last Oct, and hated it BIG TIME!! Dont even think about it being there most of the time now.

Keep smiling

Still Trying.....

by Pookie - 2009-04-06 03:04:30

Hi ShadowWeaver and welcome to this fantastic, supportive and informative little group.

I wasn't going to respond because Ian, Pacergirl, TraceyE, and wiredwoman gave such excellent advice.

But what made me respond is the title of your posting....Still Trying....THAT, my friend, shows me that you're a postive and go forward type of person. You won't give up. Not to say you might go through feelings of frustration, hopelessness, helplessness, sadness, loss, anger, etc. Most of us do go through these emotions and it's 100% normal and acceptable considering all of us here have some type or form of a heart problem.

All of us heal differently whether it be physically and/or emotionally. Unfortunately, it is never fast enough when it's YOU in the situation, right? Every second can feel like an hour. In my opinion, attitude is the key. I'm not saying you have to be happy and energetic 100% of the time, but having a positive attitude can do wonders. I, personally, have good and bad moments all day long...however, I'm dealing with many medical issues at once which is really not the norm.

Another key, in my opinion, is support. Surround yourself with family and friends, and of course us, here on this site, will help and support you as best we can.

I know you're hoping for a concrete answer of exactly when you will feel better, but no one has that answer. I thought after my surgeries I would feel somewhat back to normal after a month...MISTAKE...so, what I'm trying to say is give yourself time. If you are having pain, by all means go to your doctor immediately, but if you feel tired and lazy, well, you've just been through a surgery and your body needs time to heal.

In my case, it took me about 3 to 4 months to feel good physically but mentally it took a lot longer!!!!!!!!!! I let the mental part go a little longer than perhaps I should have, thinking everything would get back to normal after I physically healed, but that didn't happen with me, so I sought counselling and I went on an anti-depressant pill. It was probably after a year and a half that I totally forgot that I even had the pacemaker. But again, I went through 5 surgeries and won't bore you with those details.

You only had your PM since March 30 so please give yourself time. And don't forget to jot down all your questions for the next time you have your pacemaker checked. Also jot down how you feel, when, and what you were doing at the time to help the doctor. Like Tracey said, sometimes it takes your pacemaker tech quite a few tries before he/she gets the pacemaker set to where it fits or feels comfortable to you.

Also, there is a SEARCH feature on this site, just in case you missed it....upper right hand corner. There you will find a wealth of information.

You are not alone. We are here to support you.

Here's to wishing you a speedy recovery.

Cheers,
Pookie

Thank-you

by ShadowWeaver - 2009-04-06 04:04:05

Thank-you everyone for the support. It helps a bit to know that I am not the only one fighting just to accept the pacemaker. Ironically, what gets me the most is that I know my life will never return to normal, at least not normal for me. Like I have heard a few say, I feel very betrayed by my own body. I also had three procedures before they gave me the pacemaker finally and they told me when they did that it wasn't over, that I would have more procedures and surgeries ahead of me as I am SSS, A-Fib with nearly constant PSVT's and PAC's so they are talking potentially numerous ablations before they can really get it under control (the EPS was unsuccessful in defining where the problem is coming from, so they will have to do a "best guess" type of thing). I just keep hoping I will finally adapt, but I don't seem to be getting any closer. I just know it can't come soon enough.

Accepting

by IanMcC - 2009-04-06 06:04:24

Hi I thought I would drop you a line to encourage you, I felt the same, I remember. I think it took me about 2 years to finally accept my pacer as part of me, it took around 8 months to get the settings right but that was because I work away at sea and dont come home for months. I am 53 now and have been a lucky pacer for the last 2 and a half years. Before I had the pacer I was always dizzy and got to the black out stage in the end as my pulse rate got slower and slower over the years.
So hang in there it just keeps getting better from here on in. all the best, Ian.

acceptance

by Tracey_E - 2009-04-06 08:04:08

How you feel has a lot to do with how quickly you accept it, obviously it's easier to accept something that makes you feel good. Regardless of how you feel, it just takes time. Not everyone accepts it overnight, some come to grips with in in a few months, others take years. Part of acceptance is how you choose to look at it, whether you concentrate on the good or the bad. I know I'm unusual, but I never had any problems getting used to the idea of having it because I felt so bad before I got it, I was just plain giddy to have my energy back. That, and I would have died without it. It's hard to resent something that keeps me alive. I'm not normal, lol, don't feel bad for not loving it overnight.

Pm's can't fix all arrthymia's so many of us live with pvc's and svt's, they're annoying but harmless. A pm they shouldn't be causing arrhythmia. If you've had it this long and are still having problems with the settings, it's time to get pushier with your doctor and technician. Make them stay on top of it until you feel good. Sometimes a Holter will tell them more than the pm report. If your problems are with activity, doing a stress test will help show them what's happening. There are other things they can do to give them more pieces of the puzzle that is how your heart beats, all the info they need to get your settings just right. Don't accept feeling bad, politely but firmly tell them they need to try harder to figure it out.

Why did you get it in the first place? If laughing causes problems, it should be intermittent at best, even the happiest person doesn't laugh all day long. They can adjust the delay, how long the pm gives your heart to beat on its own before the pm steps in. They can also adjust rate response to make it less sensitive. If your problem is an av block rather than an atrial issue, you probably don't even need rate response though it's almost always turned on whether you need it or not. Sometimes it can compete with your natural hr and cause problems. Pm's are very complicated pieces of technology and it can take some time and perseverance to get them just right.

hi

by pacergirl - 2009-04-06 08:04:50

It took me a long time to accept the PM. Even though I knew I would be dead without it.
Be aware of how you are doing emotionally, continue to reach out to your friends here and remember that everything you are feeling is going to pass. You will feel good again. It is just a matter of time and some adjustments. Hang in there.... we sometimes have a rough go of it at first but the payoff in the end is worth all the trouble.
Talk to your Dr. if you are having problems. Communicate with them on every level. Ask for help if you feel you need it. We care about you and you are not alone.
Your pacer friend, Pacergirl

A Little Encouragement

by wiredwoman - 2009-04-06 12:04:28

Hi there,

I've had my pm about a week longer than you, and boy, it took me by surprise! A sudden onslaught of symptoms and I went from No Way, No How, No Siree, Not in This Lifetime, to...a hospital bed. I hear what you're saying about getting used to the idea - I felt angry and betrayed by my body (which was kind of a ridiculous concept in itself when I thought about it). Surprisingly though I adjusted in about a week.

I think what made the difference was I realized it is what it is, and that railing against it would only cause me further suffering - mentally, emotionally, spiritually, and physically in the form of higher stress - and that wreaks havoc everywhere. We haven't exactly become friends yet, but at least we're on speaking terms, and I do take her everywhere I go, which must mean something:)

There's a great book out called 'Loving What Is' by Byron Katie. It may or may not be your thing - but she breaks it all down better than I can.

Best of luck, and keep us posted!
**wiredwoman

Keep the Faith

by JGoode - 2009-04-07 06:04:02

You'll be fine, my friend. Just keep at it. I agree with everything people have said above.

I got mine on March 26--not long before you had your PM implanted. Met with my doctor today for that post-surgical check of the incision. And while all is well physically (no infection, incision healing OK, PM working correctly), the adjustment--mental and emotional continues. My wife went to my appointment with me today. After it, we were talking about how this is all hitting us now. (I went in on pretty quick notice after a 12-second stop of my heart.) We're pretty rationale people and I think what we've come to realize is that the PM beats the alternative--what a family cardiologist friend referred to as that old "sudden death" thing. I look at it functionally as an opportunity. I wouldn't have experienced any of the nice people on this site but for having a PM in my body. Life is a journey, right?

Everyday will get better. Keep at your doctors to get it right. I continue to have weird pacing when I go from sedentary to movement. Not always. But sometimes. Doctors need active patients. Just keep the faith. It will work out.

You know you're wired when...

Your pacemaker interferes with your electronic scale.

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