I feel much better

I had my first month in person ICD interrogation with my EP today. I had called in twice during this first month to complain about spasms, sensing electrical pulses and a general tiredness. Both times they convinced me to wait till my in person device interrogation and appointment with my EP. I sent reports both times but they just said everything looked fine. Well today was my first month in person appointment and device interrogation and I complained again. And this time they changed my settings and I feel like a new man. I don't feel the pulses, no spasms and I am no longer tired constantly. This also made me extremely depressed and the pulses were a constant reminder of my condition. Today's change was an instant effect on my physical well being. 

They made these changes-


Pacing parameters were programmed initially to DD 40
bpm. Pacing parameters were reprogrammed to DDI 50
bpm. Paced AV delay was lengthened to 350 ms from 250ms. Max sensor rate was changed from 130 bpm to 105 bpm. Tachy therapies begin at 187 bpm.


Preventice monitor: 9/10/21-9/23/21: (6 days): SR with
VE burden 2%, SVE <1% burden

What a difference some settings make...


7 Comments

That is good news

by Gemita - 2021-10-29 06:52:01

Alexander, thank you for letting us know of your experience and your settings changes which will have been individualised for you based on your symptoms and heart condition.  It is always useful to have the exact changes however and thank you for taking the time to type these. Yes what a difference some settings can make and I am pleased you have been helped so quickly. Incredible progress on the first in person interrogation.  I love success stories

squeaky wheel

by Tracey_E - 2021-10-29 08:53:23

It's sad that sometimes we have to repeat ourselves over and over to be heard. I've found that sometimes you just have to get past the staff to the doctor. While I understand that's their job, sometimes they don't know as much as they think they do.  Glad they finally listened and took care of it.

Good!

by MinimeJer05 - 2021-10-29 09:21:51

Hello,

That's good to hear! It is crazy to think that a few clicks of a button can make a life-changing impact on the person with the PM. I am nearly 2 months in with my PM implant and still not feeling 100%, but still unsure if what I am feeling is temporary or if maybe I need settings changed? 

When they last looked at my settings (before/after an MRI), they said I was barely being paced and that my battery should last for nearly 15-20 years if I keep it up, so that leads me to believe that settings probably don't need to be changed, but who knows?

I have my PM check scheduled for December and am hoping by then to either be feeling normal or to have a set of questions/concerns.

Question I did have -- how do you send transmissions? I was never shown how to do to that. I have a Medtronic Azure and a bedside monitor thing. I was never told to do anything if I feel off or concerned?

Take care and hope you have continued good health!

Jer

settings transmission / thanks all !

by Alexander - 2021-10-29 09:55:35

Hi Jer,

I have an Abbott device, I think its fairly new to market and it has bluetooth and the app is on my phone. I can send remote transmissions that way. But only an in person device interrogation can change settings for security reasons.

I hope that they dial in your settings properly. Sometimes it helps to complain and complain.

Thank you everyone, you've all been such a godsend to my mental health ❤️❤️‍🩹 

Hospitals and health care.

by Selwyn - 2021-10-29 11:29:41

I can sympathise with you Alexander. I went to see a PM technician who listened to what I said about my chest wall twitching and with a flick of a switch he stopped this - it had been going on for weeks and was quite distressing. ( unipolar to bipolar setting).

It always pays to say things exactly as they are. None of this stoical stuff. If you don't give the medical staff  the full facts they cannot be blamed for not coming to the right conclusion. 

Great News

by AgentX86 - 2021-10-29 20:59:35

Yours is certainly a tale of the importance of persereverence and getting it right; understanding what is and what can be. Knoweldge is king.

Question:  Did you mean DDD 40 (rather than DD40)? In any case 40 is surprisingly low.  I'm surprised they started you off that low.

More confising, when you say they set the "Maximum Sensor Rate" to 105 from 130, it implies that rate response is on, so it should be DDDR or DDIR, with the 'R' indicating that RR is turned on. I would assume that it's set so low because your SI node does take over at some point to push your heart rate above 105.  105bpm is awfully slow for a max rate.

Stoicism isn't so much of not caring or giving up, or even being without emotion, rather more like the thought behind the alcholics' serenety prayer:

“God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”

It's not at all giving up or not caring, rather understanding what you can change and what you can't, then not wasting time on the latter at the expense of the former.

settings

by Alexander - 2021-11-01 02:46:15

Yes actually it was DDD 40, DDI 50 is correct though. My EP had told me that since my reliance on the device appeared low (1% on one lead and 19% on the other) that they would allow my heart to naturally work for now. 

You know you're wired when...

You take technology to heart.

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But I think it will make me feel a lot better. My stamina to walk is already better, even right after surgery. They had me walk all around the floor before they would release me. I did so without being exhausted and winded the way I had been.