Questions to find out what I don't know I don't know

Hello everyone, 

I have posted about my symptoms and complications since my implant on July 18.

This Friday, Aug 18 I will finally be seeing my surgeon again. Again, after hip and knee surgery--I had pages of questions for my surgeon. 

I literally don't know what I don't know. The nurse practioner I saw last week insinuated that in her opinion--I don't even need a pacemaker. 

I'm struggling to come up with questions even though I am still feeling very tired, short of breath, my heart flutters, and I'm not sleeping soundly. The nurse practioner told me that my pacemaker has nothing to do with my breathing or my blood pressure. That none of my symptoms can be attributed to my pacemaker. I'm truly at a loss. I felt better before my implant.

Any suggestions for questions will be greatly appreciated. 

Hope you are all doing well.

Rose

 

 


7 Comments

Relax Rose

by Lavender - 2023-08-15 21:16:38

Your nurse practitioner was stupid to make you feel you don't need a pacemaker AFTER it's already in place! Obviously a DOCTOR thought you did. 🙄

We can only go forward. One bit at a time. You're still healing. You will feel better in time. We all had sleeping troubles at first. Gosh it's hard to get comfortable for a long time. Sometimes our brain still thinks we are in danger and we ruminate and think it over and over. 
 

Here's where you start: Tell them what you told us:

I am still feeling very tired, short of breath, my heart flutters, and I'm not sleeping soundly.
 

Those "flutters" might be PVCs. I had a lot of them every day when my heart was first healing from the wires(leads) being put in. Now I have them much less frequently. 
 

I was so tired for about seven months after getting my pacemaker. I took a daily nap. If I was sitting up and not lying down, I fell asleep anyways.  
 

It all gets better. Don't stress with a long list of questions. Just tell them how you feel. 
Remember to keep drinking more water than you used to and stay hydrated. 

What to ask...

by AgentX86 - 2023-08-15 23:06:13

IMO, Lavender is benig too nice. The first question out of my mouth would be why do I need this thing. I've been told by my NP that I don't. What gives?

Otherwise, I agree. For now keep your questions to what you feel, what can be done about it, and for how long. Still ask your questions about BP and all that.  Your pacemaker probably doesn't have anything to do with it but there may be drugs that will help.  Many of these drugs aren't appropriate if you had a slow heart rate and are now legitimate options because your heart rate won't be allowed to fall.

Tachy-Brady Diagnosis

by Penguin - 2023-08-16 03:59:57

Hi Rose, 

I have the same pacemaker as you. My diagnosis is bradycardia (SSS) too, but with a few differences.  

As AgentX says the pacemaker will deal with the bradycardia and will stop your heart rate from falling below the lower rate limit (LRL) which has been programmed on your pacemaker. The LRL is is usually set anywhere between 50 - 70 bpm.  You could ask what the LRL is set to as this can affect how much atrial pacing you receive. E.g. If it's set higher you may receive more pacing because normal but lower heart rates will be paced. 

The flip side is that the pacemaker can't stop your tachycardia episodes. However, the pacemaker has it's own EKG which will now monitor what is happening and will show your doctor how often they occur and at which rates. You could ask about these high rate episodes and ask if they have anything to do with the flutter feeling. 

I note that you feel as if your heart is pounding (previous post) This may be because the current on the device has been turned up to a high setting to encourage the electrodes to 'bed in'. Sometimes it can be really uncomfortable. You can ask to have it turned down. 

If you are  keen to know more about your pacemaker wait until your first interrogation papers are sent to you and at that point you could share the information with us - if you want to - and we can help you if that's what you would like. 

It sounds to me like you are doing incredibly well.

take care

Nurse Practitioner

by piglet22 - 2023-08-16 06:16:40

How unhelpful was it for her to make comments like that especially when you are a new PM patient.

It's not her job to make judgement on whether or not you need a pacemaker. Thank goodness she doesn't make major clinical decisions.

Years ago I had one tell me I shouldn't have been admitted for observation from A&E.

What the hell is it to do with her? Yes, it was a her too.

These days she would have got short shrift.

Nurse Practitioners

by AgentX86 - 2023-08-16 11:08:53

I just wanted to clarify one point. NPs are similar, at least in a clinical manner as Physician's Assistants. They can "function as a doctor but work directly under a doctor's supervision. The NP isn't that far off base by saying that a PM wasn't really needed but it is confusing. I'd not come down too hard on the NP but would press hard on why she said it. She might be telling you the truth when no one else has the guts to say that they were wrong.

Since the genie is out of the bottle, you should understand the situation enough that you're not constantly rethinking the situation. You don't need the anxiety. Put it to bed now.

What to ask

by Gotrhythm - 2023-08-16 14:31:10

Here's what I didn't know to ask.

What are my settings? LRL (Base) rate? Maximum?

What percentage am I being paced? (This number will indicate how often the pacemaker is pacing you and allow you to make a rough inference of how much you "need" a pacemaker.)

Is my heart still able to speed up when I exercise, or does it need the pacemaker for that? Is rate response turned on?

I am still feeling very tired and short of breath. Is it possible that increasing my base rate could help? Or do we need to look for other causes?

***

About the flutters. Your pacemaker likely isn't causing the flutters, but, unfortunately it can't help them either. You should mention them and ask if they are showing up on the EKG. Be honest about how often they happen and how much they bother you.

From Rosebud120

by rosebud120 - 2023-08-17 07:37:44

Thanks to all of you who replied to my post. Different perspectives and good advice. Stay tuned.

 

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