Question about settings...

I'm guessing from what I've read as well as how I feel when I walk a bit (3 days after implant) that the settings to start with are kind of "one setting fits all". Is there any info I need to arm myself with to get to the proper settings for me as quickly as possible?

4 Comments

Good question.....

by donr - 2013-01-06 10:01:44

...But you have asked us "How long is a piece of string?"!!!!!

No details about your diagnosis, other than a "Heart Block." (And I had to go to aother post to lar that).

If you want answers, we real need details.

1) What is the detail of the diagnosis? There are several degrees of block & two sub categories of type 2.

2) How do you feel now? Other that it being obvious that you have the infamous "One size fits all," syndrome?

3) There are combinations of settings that number in the thousands for a PM, though there are probably only a half dozen that make a lot of difference in how you feel.

4) Three days post-op is a bit early to really be able to answer this question - for most people. You received a comment from ElectricFrank in your first post. He told you of being abe to go about his normal business almost immediately post-op. I, likewise, fell into that category. Most of us are not that lucky. How about some details about WHY you don't feel like your settings are correct. Even at this stage, you should have an indication of the "Why" portioin of your quest for information.

Don

PS:

by Many Blessings - 2013-01-06 10:01:46

Oh, I forgot to mention. With the exception of the diaphragm pacing change (which was while I was still in the hospital), my doctor waited a few weeks before he made any setting changes at all, even if he thought they needed changing. He wanted to give my body some time to settle in and get used to the PM first.

At first it bothered me because others were saying I needed to get in and get the settings changed from the default, but you know what? He was right. I'm so glad I waited those few weeks because "most" things did settle down just like he said they would (I love my doctor). It took my body and heart a while to adjust to it's new way of working. After a few weeks, they made a change or two and I was good to go.

Sorry, I just wanted to mention that. Others may disagree, so take what they say into consideration too. Everyone's body is different, so what worked for me, many not work for you. What others have to say, even if it's totally opposite of what I say, may work for you. It's just a guessing game at first. That's why this site is SO awesome!!!! You get everyone's experiences and viewpoints.

Best wishes!

Settings

by Many Blessings - 2013-01-06 10:01:49

Hi Sue,

I got my CRT-P (PM) in April. They do have "default" settings which are okay for some, but usually need adjusting as time goes on.

The first change I had to have within a day was because it was "pacing" my diaphragm, which felt almost like a cross between a hiccup and muscle spasm in my diaphragm area. Watch for that, because many of us had that issue. I actually thought it was maybe a "normal" side effect of getting a PM, so I almost didn't mention it to the doctors. It isn't, and luckily was fixed with one quick adjustment. It felt SO much better.

The other setting changes I had were my actual heart rate, which they started at 90, brought down to 80 a month later, and again down to 70 a month after that, which didn't work for me. They moved me back up to 80 with a range to 150 which works for me. (Yours is probably set lower. Mine was set high because I had an extremely high heart rate before my PM, and they didn't want a lower rate to shock my system.)

I also had issues with my rate response settings. They originally changed it about a month after I had my PM put in. That was a good setting to be at. A few months later, they tried to change my rate response to a different setting which usually works for more active people (I'm quite active), but it did not work for me at all! I felt absolutely terrible and couldn't even make it up the stairs without having to stop a few steps up. I also couldn't walk down the hall at work without being short of breath and feeling like my legs wouldn't move. The changed the settings back, and I was good to go. It truly can make that much of a difference good or bad, so REALLY watch how you feel, and let them know.

The setting thing makes me nervous now because of that. I saw how fast you can feel like "you know what" by a wrong setting. Mine were easily changed back, which is a good thing. I still get the "what if" thinking going once in a while when they talk about eventually wanting to make a change. It scares me that if it makes me feel worse, it might not go back. So far so good though! :)

There are many other settings too, which others will comment on and help you out with. I only know the ones I've had issues with, so I can only help you with those.

Again, really watch how you feel and be open with your doctor and your PM tech. Your PM tech will be your savior where the settings are concerned. If you feel anything uncomfortable at all, whether it's short of breath, heavy legs, tired, dizzy, or anything else, even if you don't think it's PM related, let them know. It may possibly be a setting issue that can be fixed within a few minutes.

Good luck, and keep posting questions on this site. Everyone here is wonderful and we all help each other out a lot!

Tammy

Don't know yet...

by SensitiveSue - 2013-01-09 09:01:57

I understand that I was not very specific, but some things I do not yet know. I was told I had complete heart block. I did not realize that there were levels and degrees I should ask about. Tomorrow is my 7 day follow up and I was looking to find some of the things I should ask.

When I tried to do some walking I felt a shortness of breath and my bp became elevated. I was only told I could do activity as tolerated, but not how it should feel of what to look for. I feel good overall, but a little fearful each time I feel a new sensation...is this normal? To top it off I was having heart palpitations as part of perimenopause and now they are throwing me into a panic, in particular when I wake up with them. Also had quite a big of pain ftom Phlebitis - in reality this us the only pain I have

This was out of left field and I was not a very good patient advocate for myself, but until now I have been blessed with good health. I'm the past I've had a chance to do research, weigh pros and cons.

You know you're wired when...

Your kids call you Cyborg.

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