High threshold RV

I wouldn't be happy either

by Gemita - 2023-10-09 13:18:29

Lavender, that is really unacceptable news.  I just cannot understand it in view of your indication for a pacemaker.  In fact with those sort of pauses, you are lucky to be here, but you may not be so lucky the next time.  I would push for any revision to be made sooner rather than later.  I would question whether your cardiac team did the right job in the first place?

Since the insurance won’t cover a replacement until the battery is worn down further, how low does it have to get, or what symptoms do you have to suffer before they will intervene?  It is not acceptable Lavender to get the same symptoms before they act.  In my opinion that would be irresponsible and could cause a serious event to occur.  How can they possibly put you through that again and cause such worry. 

Is there nothing that the cardiologist can do to help.  Surely if he made a strong case for a swift revision/replacement, it might help, particularly if the leads were not well placed?  Someone needs to take responsibility and address this as soon as possible.  

Have you had any symptoms recently that concern you?  Would getting another opinion as to all your options, help?  I don't know what else to suggest Lavender

Sigh

by Lavender - 2023-10-09 13:47:59

I know, Gemita, I am not happy. I'm hoping my nightly monitor checks will keep a close eye on things. I'm not having any symptoms at all. 
 

I had the best EP in my area place the device and leads. My surgery took twice as long as expected and he did tell me that he had trouble placing one lead. I'm wondering if this was the best that anyone could've done. 
 

The cardiologist said the device is working at this time. I'm 100% paced. I have had no events this past six months. I trust the cardiologist and the EP. I don't know what criteria there is to allow replacement.  My report shows a battery life of 4.5 years. 
 

The cardiologist said I have no intrinsic rate but the pacemaker won't just stop. He said....not to worry.  😵‍💫

Update: I do have a call out to the cardiologist asking:

Is it normal to let my pace threshold this high without being proactive?

Was this originally misplaced at implantation?

Should we be pursuing this with insurance to get a revision sooner rather than wait for battery depletion or fainting?

Okay you have calmed me

by Gemita - 2023-10-09 14:37:18

I expect they can schedule you for a replacement if mild symptoms start occurring.  I suppose with no symptoms, they cannot justify taking action at this time.  I am reassured that your pacemaker won’t just stop, so hopefully that should keep any long pauses under control.

Leads

by Penguin - 2023-10-09 15:28:24

Hi Lavender, 

I'm not experienced with lead issues at all, but just wanted to say that one of my leads was also difficult to place / attach and is described as sub-optimal.  I have not have had the issues you describe with rising threshold figures over the 15 years that the leads have been in place although this one particular lead is mentioned quite often and when I had my device replaced it was raised again. 

This makes me think that your concerns are justified, but please take advice from others too. 

Perhaps this will reassure you a little. 

I Feel Your Frustration

by SeenBetterDays - 2023-10-09 15:31:45

Lavender, I'm so sorry that you've had this news. That must be so disappointing given that you are less than 3 years into your new device. Does the battery deplete more rapidly because a higher voltage is now needed to get the signal through? I really hope you don't have to experience any of your old symptoms before they intervene. Did they give you any indication that the leads were not optimally placed when you had the op? This must be really disappointing that you may not have the battery/lead longevity that you would have expected or hoped for. Sending you much love Lavender, I am pacemaker dependent too so always feel awful when they carry out the threshold checks. The insurance issue is really not good enough when patients have to suffer ill effects before having a replacement battery. They should absolutely review this policy. I hope you get some positive news soon. Thinking of you.

Thanks for the support 😘

by Lavender - 2023-10-09 17:12:53

Your question "Does the battery deplete more rapidly because a higher voltage is now needed to get the signal through?"

yes! I sometimes think the cardiologist doesn't want to concern me with details but I would like to know why -if it was correctly placed and was initially using a small threshold -why it is now using so much more? 
 

No one ever told me the RV lead was suboptimal at the time of implant surgery. Just today, the cardiologist said the leads are not optimally placed by my heart. Right after surgery, the EP just said he had difficulty with it.

Insurance companies shouldn't make medical decisions. I'm awaiting a call back-it will likely be tomorrow-from the cardiologist. You know we always think of more questions AFTER our appointments.  Heck, we are given info quickly that we may not understand and the thoughts of what we should've asked are delayed while our brain processes this info. 

Ugh you know we do what we gotta do. I'm one of those folks who usually have unforeseen issues with medical stuff or even medication. 

My Sentiments

by Good Dog - 2023-10-09 21:10:09

Lavender, I feel very bad that you are going through this! I can certainly understand the stress that this must be causing for you. I really wish that I had something more to offer, but I can tell you this; if your doc advises the insurance company that the fix is now "medically necessary", they will have to cover you! I have learned from experience that seems always to be the way it works in situations such as this. Hopefully others will chime in that may know more than I. I don't claim to know much! It is not your doctors job to worry about the insurance company. It is his job to take the best care of you that is possible.

So I guess that my point is; you really need to have a high level of trust in your doc. You said that you do trust him. There is nothing wrong with seeking assurances and/or reassurances from him that it is not medically necessary to do it now. To say it in basic terms; that you are not in any danger.

In the meantime, just know that I am sending thoughts and prayers your way!

Sincerely,

Dave

Thanks Dave🍁🧡

by Lavender - 2023-10-09 21:40:34

Dave,

Thank you. I'm so appreciative of prayers. I'm still awaiting the return call from the cardiologist. I have a written list of questions at this point. I wonder why the pacing threshold was normal at first but now escalated. (I think it could be scar tissue now impeding things. I wonder if a mammogram injured a lead last year. I wonder if an xray would show if there's an issue where the leads connect to the battery box. I also wonder how many others have pacing thresholds this high.) My mind is thinking of all kinds of things🙃I think too of how surprised the pacemaker tech was seeing the threshold, and how she left the room immediately to consult w the doc. She later told me she shouldn't have mentioned the high threshold to me. I told her that it's my body and I want to know what's going on. 
 

I told his nurse on my phone call this afternoon that it's not acceptable to me to wait til the point of fainting because I already had two near death experiences from being paused so long during a drop attack. I told the cardiologist in person that I might not recover from a faint, but he said my pacemaker is still working. It won't suddenly stop. I feel absolutely fine. I want it to stay this way. 
 

My cardiologist is really smart. He's the guy who reads most of the cardiac tests done at the hospital for everyone. I thought perhaps maybe he would/should consult with the EP.  I asked him in person if there's anything to worry about and he said no. I guess I do need his reassurance again. 🤔

As SeenBetterDays said, I am really disappointed that I "may not have the battery/lead longevity that you would have expected or hoped for"!

As much as I don't like the roller coaster feeling of the lead tests, I am not comfortable knowing that no one is now testing them at all😵‍💫

Ok enough complaining. Will see what they say when they call back tomorrow. I don't expect anything to change because he told the receptionist to schedule my six month appointment and we did. 🙄

I hope you get the care you so deserve

by Gemita - 2023-10-10 05:25:22

Lavender, you have clearly hit back and have started asking the right questions and you can do no more.  I hope you get adequate answers today to reassure you.   Only you will know the fear that you went through, the risks that you had to take living without a pacemaker to protect you.  I too would want to know the reasons why your pacemaker is not working efficiently and why you could experience the same symptoms again, needing an ER visit.

I am partly reassured by your confidence in your doctor, but I would need to know that he would be willing to go one step further to make sure that his patient does not have to experience another syncope event before he takes action to address the problems that you are facing.  I am wondering whether they should start investigating now the full extent of the problem and to set out clearly what your options might be.  You really don’t want to be waiting for something to happen and for your surgery to then be an emergency.   Elective surgery for instance would give your doctors time to carry out the procedure while you are still well and symptom free, without being under pressure.  

Lavender, since you are questioning what has specifically caused your pacing threshold to increase, this clearly doesn't appear to have been fully answered.  Good lead placement is critical to help keep the voltage requirements low or within normal range, so perhaps your high voltage is due to poor lead placement/position at the outset?   Have they looked for scarring of heart tissue, inflammation and all other possible causes?   If your lead is not in a good position to give a good signal they will have to keep the voltage set higher to compensate.

Waiting too long to have this addressed might make things more complicated in the longer term, so I am glad you are asking some important questions now while you are still well.   We all hope for the very best for you dear Lavender

Gemita😘

by Lavender - 2023-10-10 08:01:41

You, as usual, have a very clear and precise handle on the issues. Your compassionate concern is like a warm hug. 
Your questions:

"Good lead placement is critical to help keep the voltage requirements low or within normal range, so perhaps your high voltage is due to poor lead placement/position at the outset?   Have they looked for scarring of heart tissue, inflammation and all other possible causes?   If your lead is not in a good position to give a good signal they will have to keep the voltage set higher to compensate."

I do wonder if the initial placement was ok because at implant the threshold was perfect. I'm wondering what changed-did the lead move or scar tissue make it require more voltage to get the signal through?

Recent bloodwork would've have shown inflammation so I am thinking that's not it. 
Like you, I wonder if any tests, such as xray, would be helpful to see if things have moved in there. 

I think too, though, that the cardiologist already knows the situation and might not be as concerned about how it happened. Here we are-how do we deal with it? For now his stance is a wait and watch. I'm still waiting for the callback. Will relay what they say. 💓⚡️

The call back

by Lavender - 2023-10-10 12:49:45

My cardiologist called me this morning. He was so patient and answered my questions well. 
He said that sometimes, for many reasons, pacing thresholds rise.  It's not dangerous in any way and doesn't harm the heart. It runs down the battery faster though. He said many people have this high of a pacing threshold. 
 

He said mammograms won't hurt the leads. He said we know my wires are firmly attached to the box and are working because the pacemaker is working 100%. There is no danger. 
 

He said the pacemaker will not cut out on me. It will continue to be checked nightly by my monitor and they will know when I have a 2-3 months left of battery. When the CRT-P device is eventually replaced, all leads will be tested. If one isn't tested at proper voltage, it will not be repositioned, it will be replaced. 

I repeated to him that he said if I faint, to go to the ER. He said, "I'm sorry. If you faint, it won't be because of your pacemaker. " He said it's perfectly fine and if there was an issue, they'd bring me in. He said, "Put it out of your mind. Your monitor is watching."

So, Dave, I got my reassurances and extra explanation as well. I'm relieved. 😉 I recorded the call so I could clearly hear and repeat it to myself if need be. The cardiologist also said there's a different way to check the leads and he will do that at my six month appointment. 

Great News

by Good Dog - 2023-10-10 12:58:22

Wow, that is great news. It even makes me feel better....lol.

Glad to hear it!

Sincerely,

Dave