Settings parameters emailed today!

Optimisation is set to on but why do I need it on at all?

by quikjraw - 2021-03-25 05:36:55

Thank you for that ar_vin,

My settings state that optimisation is set to "ON".

However, why do you think RR has been set up when I do not have sinus node issues just heart block?

I know I can ask them directly but people on this forum have a wealth of experience and there might be something I might benefit from for some reason.

I am a decent runner (5:15 minute mile achieved last year during a challenge before Pacemaker fitted)  and cyclist so I am not sure what having it on is going to help me with?

Thanks John

Now you can ask better questions

by crustyg - 2021-03-25 06:38:08

Information == power, so now you are able to ask better questions. Perhaps someone had thought that you were beginning to show signs of CI, perhaps it's just a mistake.  Better to focus on a proper conversation where you ask why RR is enabled and suggest that it should be disabled.  You are correct: for 'simple' HB with normal SA-node and no evidence of CI, your PM should *not* need to have RR enabled.  But don't spend too much effort trying to work out why and whose fault this was/is, aim to get them to set it correctly.  Politely and firmly demand ALL PM reports at every F2F sesssion, taking a USB-memory card with you.

The value of the forum members is their knowledge of what the jargon means and why certain things matter more than others.  We are never going to be able to answer 'why was my RR enabled?'  That one is entirely for your EP-team, but the goal here isn't an explanation or apology, it's to get your PM set correctly.  So your comment "I know I can ask them directly" needs to become "I shall be asking them about this," IMHO.

5:15 per mile!  Wow, go you.  Best I could ever manage was 6min miles and that not for long.

Best wishes.

John that is good news

by Gemita - 2021-03-25 07:22:26

Did you just ask for your parameter settings?  I have asked for my full downloads, including parameter settings (I have been asking since last October) and I regret to say despite a recent flurry of emails, I am still awaiting these on a disk in the mail or by electronic transfer.  As I may have mentioned, my EPs technician is now involved and knows the information I require, so I am still hopeful it will be given to me, but it has been an uphill struggle so far.  

Well now you are empowered to ask all those challenging questions.  You now have the clear evidence to support your study of what might be happening.  You have come a long way John and we are proud of you.  When you do question them, go in gently and with respect.  They are probably not used to being challenged by Pacemaker Club patients who want to be involved in their own care.

Really well done and manage those settings well and please don't get too ahead of me.  Wait for me to catch up!

Thanks for all your positive comments

by quikjraw - 2021-03-25 09:05:25

Thanks crustyg and Therese for your encouraging comments.

I should have written " I will be asking them why it is on" that was always my intention so sorry that was not clear.

I was first wanting to get some real experience back from members on here to see if with heart block they also prefer Rate Response on for running or cycling.

Therese I did ask for downloads as well but they have not sent those unfortunately.

I have more useful information that I will share shortly .

Thanks John

by Gemita - 2021-03-25 09:43:04

Maybe I am going to have to amend my request to receive parameter settings only to get mine delivered as well.  Maybe the full download is the problem.  I do recall another UK member saying that while he used to receive a copy of the full download at each pacemaker check, he is no longer able to receive this.  So much for the Access to Health Records Act, but I will write to my EP's secretary and suggest they send parameter settings only.  She is always so helpful.  

I had mine emailed directly from the EP

by quikjraw - 2021-03-25 10:18:53

Therese,

What I did first was email the secretary of my cardiologist for the settings. A month later nothing had happened. I emailed again and then a few minutes later at that point an EP technician rang me (not the secretary) and asked how he could help.

We talked through some more things but he, there and then sent the settings to me on email.

I checked my email and they did not arrive?

It would appear here may have been some technical issue their end as eventually they did turn up about 30 minutes later. I suspect it is some silly IT thing within the NHS where they block external emails. Which is strange really as realistically a phone conversation is far less secure than an email.

I'm sure that is what you have already done and more but just in case.

Fingers crossed for you

John

It can be on

by PacedNRunning - 2021-04-05 00:19:06

It can be on but the settings are so low they probably dont matter because your own heart is able to do the work. It's more of a back up.  If your heart does the work the pacemaker will withhold pacing.  They can tell by looking at your HR graphs if it's the PM or you increasing your rate.