Workings of pacemaker

[Nannyjenny]

Just had something "switched on" on my pacemaker to help with sob and ankle swelling. Where can I read up on such settings please?

[bantam12]

Easier to ask your pacing clinic what exactly they have done, sounds a bit odd unless they've just increased or decreased your pacing level.

[Nannyjenny in reply to bantam12]

Been there today but want to learn more about how they work and what they are capable of doing

[bantam12 in reply to Nannyjenny]

If you know which type of pacemaker and manufacturer you can look online for specific info.

[Nannyjenny in reply to bantam12]

I have asked them to provide me with the manual as I want to no all about it. I find the pacing clinic treat me as if I don't need to no!

[Denise2011]

Can they make changes remotely? Are you feeling better now ? I've been wondering this because suddenly I have changes to my heart rhythm (PVCs) and these affect me badly. I had 7 fabulous days after having mine fitted. Have you had your pacemaker for long - hope you don't mind me asking.

[bantam12 in reply to Denise2011]

You may need your settings altered, give the clinic a call.

[Denise2011 in reply to bantam12]

I did (twice) and they inferred that it is set as it is and that the only thing that is paced is for SVT, which I had no idea I had. I was told I need Beta Blockers again to control it, but for all the years I took that stuff I still had this and the other rhythms. I'm more than perplexed today .... I'm actually fraught, because I can't live my life like this. I am surprised that they can alter them remotely. I'm looking forward to hearing from the lady that instigated this thread. Thank you anyway.

[Nannyjenny in reply to Denise2011]

I attended clinic and they "switched" something on to give me more oomph when I exert myself. I no so little about them so I want to find out more. Mine was fitted April 2020 and after the RV lead perforated my heart twice, it was removed during ohs in Aug. Been sob since October 2020.

[Denise2011 in reply to Nannyjenny]

Thanks Jenny. I thought it had been done remotely, ie you at home and they did it at their end. So does that mean that your pacemaker is 'incomplete' and reliant on the other lead or leads? That must have been very scary for you for the RV lead to perforate your heart - once must have been bad enough, but twice .... Are you feeling a little better now or still struggling being SOB? I know exactly where you are coming from, wanting more info. I'm struggling as well as I thought that I was now sorted.

[Nannyjenny in reply to Denise2011]

Still SOB and now lightheaded as well! They explained it as "switching on" something to give more "oompgh" when needed but nothing to do with altering rate setting. They said I might feel something in my chest when oomph is called for but I don't think they explain things properly.

[Denise2011 in reply to Nannyjenny]

Hi Jenny, I've done some digging/research, but have come up with nothing that might help. That feeling of lightheaded is something I know well and certainly has increased since my pacemaker (inserted 2 weeks today). It is awful and I am struggling with it. I am wondering about your breathlessness, if it might not be the case (possibly), that your medications need to be reviewed? I am guessing you have heart failure, is that right? If it were me, I would ring them again Jenny. I had to today after a call on Monday. I learned something today I knew nothing about and also that the pacemaker would not solve the problem I am struggling with. So, do give them a ring Jenny .... they should spend some time with you, not just to explain, but reassure.

[Nannyjenny in reply to Denise2011]

Sorry to hear you are feeling unwell. Give your clinic a ring as they may be able to help. You must have a follow-up? I have emailed Medtronic and hope they will get back to me. Gave them info on the card I have to carry.I have just spent 2 weeks in hosp after 3 collapses and was under threat of having a third RV put in but I was petrified in case that also perforated. Instead, at last minute they inserted an implantable loop recorder that will tell them what is going on but only if and when I collapse again. Had one b4 but this one downloads info to hosp at 2am every morning. Pacemaker working OK with just AV lead.

[Denise2011 in reply to Nannyjenny]

Goodmorning, Nannyjenny

I'm glad you are getting sorted and I can understand how worried you must be!

These little recorders are better than ever these days, I believe. Fingers crossed they will get to the bottom of it all with haste.

I hope Medtronic comes back to you soon. Did you know you can ring the Watford number? 01923 212213 and ask for technical help. Have your SN number to hand, or else they cannot identify you. I used them the other day, but because of my question they bounced me back to the hospital.

I'm going this morning to my local hospital to have my leads checked, as I had this done 50 miles away.

Kind regards

Denise

[juanitamc in reply to Denise2011]

Hi Denise, I also phone the Watford phone line, but had no joy from them and they gave me this number which is Head office and they were really good and call you back, They answer all my questions. Their number is 00 31455668462

[juanitamc in reply to Nannyjenny]

Hi NannyjennyI have the phone number for Medtronic as I had to contact them for other reasons, they are very good and answer all the questions that you might have.

Their number is 00 31455668462 (Hope this helps)

[Nannyjenny in reply to juanitamc]

Many thanks will give it a try!

[bantam12]

Is this rate control you mention something different to the rate sensing facility for bradycardia which makes it kick in ? I think that's all my Medtronic does.

[Nannyjenny in reply to bantam12]

That's what I want to find out. They said this should improve my SOB and swollen ankles. Will see what Medtronic come back with.

[bantam12 in reply to Nannyjenny]

Medtronic can't tell you what your pacing tech has done or what your pm is set to, better to call your pacing clinic and ask them to explain what they did and why.

[Callista]

Best of luck with the pacemaker clinic. I find mine patronising and not very helpful. You will probably learn more from replies on this forum.

[Nannyjenny in reply to Callista]

I agree with you totally.

[bantam12 in reply to Callista]

I must be lucky because my pacing team are incredibly helpful.

[playcards]

HappyJo, This is such an interesting response, you have articulated for me that movement involves both physical movement PLUS effort. I sort of understand the fairly crude movement sensor but do you know how it can detect effort? I have a Pace and Ablate so my Optronik pacemaker is fully in charge. I would welcome your advice on reaching a better understanding.

I am not sure this forum allows one to give too many details so I won't say where I am, but the staff at my Pacemaker Clinic are always lovely and very helpful. It is just me who doesn't know the right questions to formulate at the right time!

[playcards]

HappyJo - I meant Biotronik for the pacemaker, sorry.

[Vic67]

amazon.co.uk/Pacemakers-Mad...

I found this book very helpful and enabled me to ask the right questions when I attended my clinic.

[Nannyjenny in reply to Vic67]

Thank you so much. Whatever they did had to be reversed yesterday as I became lightheaded, very short of breath and had chest pain. Was attending hosp clinic ENT at time and was sent to A&E. Much better again now.