Does One EVER Stop Feeling Their PM?

I had an emergency Medtronics PM double lead, implanted Christmas Eve. I'm a very active 55 y/o Wife, Mother and Grandmother. No heart disease, just electrical conduction issues. In these past two months, I have been tweeked probably 4 times including yesterday.

I am grateful for the PM; it saved my life. But I just haven't felt totally well ever since. Once they got my Afib under control with a BB, and after being treated for a blood clot, I thought I'd be home free. Wouldn't that be nice?

At my cardiologist's office, there is a woman that "interrogates" the devices and makes any adjustments. She is not an EP, an RN or an MD. She has the warm of an iceberg. I am a reasonably intelligent person that paid attention in Physiology class but she throws out so many acronyms that I don't even ask her to explain them. I sit down in the chair and am told not to bother taking off my coat (i.e., 'this should just take a second and you can be on your way.'). I explain that my HR before the PM was always very high with exercise. I'm the one in aerobics class that has to stay an extra 30 minutes so my HR will go down! So she says, "I can make it more sensitive . . . " and reluctantly hits a button on the screen.

It may have helped me run up the steps without being completely exhausted but I feel so weird at rest. I have a lot of premature beats, and skipped beats, neither of which concerned the tech. I describe those episodes at arrhythmia but she didn't. She rattled off something about Q waves and xyz. See you in 6 months.

Am I being a whiner? Is this what I should expect? Does it just take time to adjust? Last night I could literally take my pulse just from HEARING/FEELING my heart beat. I am looking for honest answers. If you think I just need to get over it, tell me. I won't be offended.



10 Comments

NO

by jeanlancour - 2014-02-25 11:02:45

You should expect to be treated with respect, and have any and all questions answered. Ask for a copy of all interrogations, and do not leave till questions answered and copy in hand. If you don't understand, ask for explanation, be firm, do not get angry, just set right there untell you have what you need, Unfortunately, they deal with far more people that ask no questions, makes it harder for us that care. The first time when I was getting the brush off, I asked to see someone who could answer my queations, she then grudgling answered them, I made a note of her name. Before my next interrogation I asked for a different tech, when asked why I told them. I am treated much differently now. Stand your ground, you are the one paying them. Jean

Thank You JeanLancour & KnotGuy

by NiceNiecey - 2014-02-26 01:02:04

Thank you for your helpful opinions; I am taking them to heart! I will give it another few weeks but after that, I have already chosen my backup cardiologist. I will keep you posted. Thanks again.
Nice Niecey

You are not whiner

by Duke999 - 2014-02-26 04:02:51

I had 3 different PM reps for Medtronic and they are all unfriendly, inconsiderate and unhelpful. I don't think you're the only who experience this. I don't know why they behave that way. If I have concern, they make me feel like I bother them. And they hurried as fast as they can and not bother to answer any questions. I'm glad that you're getting a backup EP. I wish you well.

Duke

Sensitivity varies by individual

by BillMFl - 2014-02-26 08:02:08

I can feel my heart beat and also hear it when in bed and all is quite. Then I discovered some "white noise" blocks it out. So a small fan, or dehumidifier or air purifier that makes a steady whoosh basically drowns out the heart beat sounds and I fall asleep much much faster. I can also strongly feel the PM do its self interrogation. It used to wake my up in the middle of the night. Now it goes off at a little after 5 pm. The pacer rep can reset the time if you ask. When I am pacing, my heart beat is a bit more robust than my intrinsic beat. And since I am a slim trim and fit person, the sensations seem to pass thru my chest wall better than the average person. Or perhaps I have more sensative nerves in that area, who knows for sure. A lot of folks don't feel anything that their pacer does. But some of us do. It takes a while to het used to it and to learn to ignore it.

Get a report

by Elleninminn - 2014-02-26 09:02:29

I hope your next interrogation will be done by a nicer person. The PM nurses who've done mine are super nice. I always ask for a copy of the entire report. It's handy to have in case you want to call your device maker's customer service line and ask for an explanation. The last nurse I had even taught me to read some of the ECG waves and showed me the P waves that indicate I was in normal sinus rhythm. Any chance you have sleep apnea? If so, get tested. I'm becoming a proselytizer, because my own heart arrhythmias have gone away now that I'm using a CPAP device.

It does take time to adjust, but it gets easier. I also could feel every heart beat before my heart recently settled down. You are probably on meds, right? They can make you feel tired, and getting the dose at the right level is so important. Make sure your doctor knows how you feel. Don't be afraid to challenge him or make suggestions.

Eventually you won't get the extra sensations

by RunnerJudy - 2014-02-26 10:02:05

Hi! I got my PM at age 55 -- three years ago. At first I was acutely aware of the "zaps". I couldn't lay on my left side for about six months. After a while it seemed my heart an PM adjusted to each other and I rarely notice it anymore. Mine only regulates for low beats and I don't have high issues nor do I take meds -- don't know if that makes a difference. As for not feeling well, it takes a while for our bodies to recover from the shock of the experience. I pretty much died 3 times one weekend before I got my PM. I was home alone for the first one & have no idea how long I was out. Then there is detoxing from all the surgery drugs. Give it time, dear. It's 3 years later & I'm back to hiking, lifting & yoga. Didn't realize how sick I was before until I see how good I feel now.

I agree that the techs can be really abrupt but they shouldn't be rude. I kill them with kindness. After a while you establish a relationship.

Oh, I'm a grandma too! All the best to you!

Not whining

by Theknotguy - 2014-02-26 12:02:30

I'm always amazed at the number of medical people who either, don't give a damn, or are so inept the should be fired on the spot.

My EP makes sure I know what is going on. His argument is if I know what's going on I'll participate in my health care. So he and his staff make sure I'm well informed.

Same for you. You can't help yourself if you don't know what's going on. So I'd have a conversation with your cardiologist or EP. If they don't care that you are informed, it's time to move on.

Sure, sometimes we can be pains to live with, but if we're participating in our care it's less of a headache for them in the long run.

They keep the voltage on the PM at a higher rate for the first 90 days. It causes a harder "thump" when your heart beats. After 90 days they usually drop the voltage. That reduces the "thump".

While the p waves, q waves, etc. may tell them you don't have problems, you still feel things. Taking the time to explain what you have reduces your stress and sometimes reduces the funny feelings. I'm a graph oriented person so seeing a graph tells me a lot. Other people may not be able to read the graphs but sometimes it helps.

Another thing, the techs aren't allowed to "practice" medicine so sometimes they can't answer your questions. They may know you have something but "only your doctor knows for sure", so you won't get answers.

I was in a step down unit. They had a 17/18 year old kid there who was on a ventilator. You walked past his room every day. The staff wasn't allowed to say anything about this kid because of HIPAA and privacy laws. Kinda hard to understand but the staff would have lost their jobs if they would have said anything.

What can you do?

You can ask for a report from your PM the next time it's read. That will tell you a lot of things.

You can ask to have a consultation with your cardiologist. If he's not willing to answer your questions and explain what's going on it's time to move on to another cardiologist.

Heart disease is a maintenance disease. The more you know about maintaining the disease and yourself the better off you are. You'll also find it's a moving target. Everything you know this week changes within a few days of weeks.

I hope you can start getting some answers. If you're not sure of what questions to ask you can always come back to this forum and get assistance.

Theknotguy

Tired at rest also

by Ck - 2014-02-27 08:02:17

I've had my pm for two years. I wish I was like the folks in the earlier responses who say their sensitivity to the device went away. I still feel everything.

Why were you tweeted 4 times in 2 months?! I was seen once and then put on the remote schedule to download every three months.
I have had 4 EPs and all have done the same- seen one time, then put on remote schedule. They don't even call to say they have received the download.

I too am tired at rest. My heart works great when active; all my problems occur at rest. After my implant I felt AWESOME!!! Totally alert, rested, ready to go! Went for my post-op check up and on the way home I fell asleep (no, I wasn't driving), and slept the entire two hour drive. Been pretty much sleeping my life away since then.
That was two years ago.

More "Tired at rest"

by Ck - 2014-02-27 08:02:43

Hey, sorry if my post reads as a negative. I don't want to make you feel worse.
I'm a year younger than you. Had an MI ten years ago and really shouldn't be alive, writing this post. So I am thankful for every day. Even if I spend it whining about my pm!

Perhaps we can help each other, even if we got pm for different reasons (mine is for complete heart block due to damage from heart attack). But we're experiencing the same problem.
I exercised every day (race walker) and led an active life, but the pm definitely changed that. I'd been able to "muddle through" for a year, but then it just got too hard.
So now I sit in a chair all day, watching TV or playing on my iPad. I get bursts of energy enough to make an appt with a new doctor- in hopes of finding a good one like my Dr Osolsky- and then get worn out and go back to my chair when I realize they don't give a hoot about "fixing" me.
With all the different options available with our devices, maybe you will find a setting that helps you, and you can let me know. And I will do likewise.

Sorry again for my negative post. :-)

Whiner? No Way!

by donr - 2014-02-28 12:02:20

Consider the following scenario - you go to a foreign country where you do not speak the language. And - there was no one to interpret for you. After 2 months, how much of that new language & the customs, courtesies, taboos & mores of that country would you expect to know?

Not much, that's for sure.

Now supposing you hired an interpreter/guide who was a native.

What would you expect? A constant stream of explanation of all the issues I listed in the first para! Intro & lessons on the language; explanations of their customs & courtesies; the same for their taboos & mores. All cheerfully given because you HIRED the interpreter.

Sounds like you are in a foreign land w/ a rotten interpreter! You deserve better. Newbies, especially, need their heads treated as well as their hearts - your head is being ignored!

It's time to get a new Cardio if this woman is the only tech present for duty. Further, the Great Man needs to know what your reasons are.

Donr

You know you're wired when...

Your life has spark.

Member Quotes

I am an avid scuba diver.