Three tries... help!

Get the right settings--then see how you feel

by Gotrhythm - 2018-10-03 17:12:30

I'm sorry you've had such a hard time.

Even when everything goes exactly according to plan, it can take a while to start feeling better, for lots of reasons, but the simplest reason is that your pacemaker's settings aren't right for you.

Some people do well with the factory settings. Other people, it may take several tries to find the right parameters. Getting the right settings can make all the difference. For instance, most pacemakers out-of-the-box are set at 60 bpm. That's fine for lots of people, but I never felt truly well until mine was changed to 70 bpm. For others, 60 bpm is too high. It's an individual thing.

Another setting parameter is response rate--in other words how fast the pacemaker will speed up your heart when you are more active. Again, what feels good to you is individual. Lately my response rate was made more sensitive. Just reacing for a tissue can send it from 70 to 90. But I love it, because I'm also able to go from a stand still to dancing fast in a snap--no out of breath. It sounds like maybe your response rate settings need some tweaking.

That pacemaker check thing they do? it only tells them if the pacemaker is working. It doesn't tell them if the settings are right for you. Only you can tell that, and some times it takes several tries to get every parameter right.

Part II

by Gotrhythm - 2018-10-04 15:24:17

In the above comment I didn't respond to the emotional content of your post.

Having had bad leads twice has damaged your confidence in your pacemaker. How could it not? In your shoes I'd probably feel the same. Even so, waiting for the other shoe to drop, wondering what has gone wrong now, though understandable, won't help.

You sound like a person who is usually able to manage her emotional reactions. Use those same skills to put the past behind you and learn all you can about your pacemaker, how it works, what it can do, what it can't. How long you can expect it to last. What constitutes an emergency and what doesn't. The more you know the more sense of control you will have, and the better you will be at communication with your cardiologist.

Why some cardiologists are so hard to get any useful information from, I do not know. You get the feeling, as long as the pacemaker is not broken, who cares what's on your mind? They just want you to shut up and go home. [sigh] 

But complaining about cardiologist's attitudes won't help either. It's up to you to learn to advocate for yourself, and that means being able to describe exactly what you feel, and ask the question you really want the answer to. And keep asking until you are satisfied. For instance, that doc saying 60 to 120 isn't an issue. You could say, really? It seems like an issue to me, because when it happens I feel _____ or I worry about _____.

Advocating for yourself means that you ask and keep asking until you have what you need.

It is completely reasonable to expect to feel better after you get a pacemaker. Your body has been through a lot. It may take time and a few adjustments, but stay with it. A pacemaker that is working optimally for you can make a big difference in your quality of life. 

If you find you cannot communicate effectively with this doc, like Swangirl says, find someone else. Travel if you must. You deserve to feel as well as you can.

Help... thanks!!’

by Sheela2288 - 2018-10-09 22:09:52

First off, thanks for all of the information. Secondly, I did have a cardiologist he is the one who referred me to the electrophysiologist. It all happened very quickly with him, admitted on a Wednesday and had it placed on a Friday.  However, I felt he explained everything very well and had great confidence at that point. After the revision not as much. I let  him do the last placement as I would not be able to get in to another doctor for several months. 

I will say this, I spoke with my Family Doctor and Friend who explained I may not feel as “good” as other because of my autoimmune issues. He told me that I’m basically my body is like a prison cell and I can only go so far. As an aside, he also referred me to another electrophysiologist, as well as going to the head of cardiology for some of my complications. My Hemotologist/Oncologist also spoke to the hospital administrator as well  

Now, that said I have an amazing life  I always say these health issues qare a small price to pay for such a good life!  I certainly take my health issues seriously, however, I don’t want them to define me I’ve always  said you live with it or die from it. I’d rather have a few great years than a ton of bad one  😀 Again, thank you all for all of the helpful information