Update for my friends!

Pacemaker clinic update: I'll try my best to get this info right lol and apologies for the long post.

My settings are DDDR. If AF is sensed at 110bpm it goes into Mode Switch with a setting of 70 now ( was 60) and when it goes into AF they've turned off something in the Atrial lead, I think, so that my heart rate can increase etc if I'm in AF and I'm out and about.  It can sense if I'm breathing and moving around but wont send fibrillation messages through to the ventricles.This Mode Switch just reverts automatically when the AF stops. 

My low setting in DDD is set at 50. Apparently this is because my SA node is perfect so is doing it's job 99% of the time atm. 1% was when I was in AF. But they've reduced the Max setting to 110. My consultant says this should stop the atrial Bigeminy or PACs generally being able to get through to the ventricles. Please please please let this be right. 

The technician spent a lot of time talking to me but more importantly, he listened and reassured me. I feel so different! He says that decision to give me a CRT-P pacemaker was definitely correct. I have been given a souped up Rolls-Royce of pacemakers and I have to trust them. Trust is difficult when you don't know people or teams but he worked quite hard to talk me through stuff so I guess trust builds. I've got an appointment with my actual cardiologist in a fortnight so I have more questions for him and I'll see the technician again. 

Think I'm making progress. He did say that it takes time to get it right for me,but they will definitely optimise it for me. But I'm to expect to get sensations from time to time because I'm so sensitive atm but this will pass. 

Just wanted to get this off my chest so thankyou for reading/listening. 🙂

11 Comments

Hip hip hooray😃

by Lavender - 2022-08-31 15:38:32

You sound like the ton of weight you've been carrying has been lifted off you! You're much more confident and at ease! Bet you wanted to hug that pacemaker tech!😎

High fives all around!🙌🏼

settings

by new to pace.... - 2022-08-31 15:40:02

Thanks for letting us know ,you were able to get some of your questions answered.  an you are feeling better.

new to pace

 

Thanks folks

by toniorr11 - 2022-08-31 15:44:32

Lavender... massive weight of my mind! Definitely high fives. I don't think the technician really knows what he's done today lol. 

Newtopace... feeling loads better 🙂

That's great news!

by AgentX86 - 2022-08-31 16:03:58

I'd still have questions but it doesn't matter. It works.

Like one time my manager asked me to check out the particulars of a new generation of computers that we were releasing. I went back and told him that some of the interfaces were violating specifications. His answer was that the previous generation of the computer had exactly the same interface (I wondered why I was asked to check them, but...). He then told me about the "Existence Theorem".

Existence Theorem: "If it exists, then it exists."

Simple words to live by.

A promising start

by Gemita - 2022-08-31 16:17:44

Toni,  well done - you seem to have got your message across about being so symptomatic.  I think we can definitely say your technicians are trying their very best for you and we need to wait to see if the adjustments they have made will help you and reduce any troublesome symptoms. 

I am reassured by your statement though that they spent a lot of time talking to you and more importantly, listening to you which I know is so important. I can sense you feel a little better already and that feel good factor can make such a difference.  We all know you have a Rolls Royce of a system implanted (don't know how you managed it on the NHS), far more complex than I could ever have imagined following an AV Node ablation and I will watch your progress with interest and learn something new.

I expect you will sleep better tonight. 

More questions!

by toniorr11 - 2022-08-31 17:10:08

AgentX... definitely more questions but they can wait until the 13th now. I'm not entirely sure I've got the right picture in my mind... I know they've turned something down to 110 to stop the ectopics going through but I'm not sure if that's my Max rate or something to do with the Atrial lead. I thought I was reasonably intelligent until I came across electrophysiology 😅

Gemita... I'm eternally grateful for your listening skills. I told the technician about the pacemaker club and said how wonderful it was! His student was really interested as an information source for newbies. He was impressed by my questions! (All of them yours and Agentx!)

So,lets see what happens next! Nothing I hope lolol. Just a decent night's sleep for a change. 

 

It is certainly a journey

by Gemita - 2022-08-31 20:39:05

Toni, I always find my pacemaker technicians enjoy being questioned, time permitting, and seem quite surprised that I want to learn about my pacemaker.  It is quite unusual apparently but it is certainly helpful for us to have a little knowledge and understanding when we want to get the most out of our care.  They were even more surprised when I started asking specific questions about some of my settings and thresholds that had to be reached for certain functions to be triggered and things like this and questioned whether I had a medical background. 

I never go in with too many questions.  Better to get two or three thoroughly answered and understood than trying to cover too much at any one time and coming away feeling disappointed. 

Exactly

by toniorr11 - 2022-09-01 03:06:24

That was exactly what happened. He was surprised by the questions and I knew he wouldn't be able to answer some of them so I'll keep those for the consultant. But he kept saying things like..great question....or I'm surprised that you know so much. But I do appreciate that It takes a lot of time and education to really learn to be a physiologist technician. I did say that I understood that but I needed to have a grounding in the basics. It was definitely the best appointment I've ever had. As you can tell, I'm prone to overthinking but it comes from wanting  knowledge! 

Anyway, not one ectopic overnight. Can this be possible? Fingers crossed ☺️

Not one ectopic beat - wow

by Gemita - 2022-09-01 05:46:56

Toni, that is such encouraging news.  Have the settings made an immediate difference I wonder or was it because of your very positive, reassuring appointment yesterday where you were clearly in control.  We have to wait and see.  

Knowledge is definitely power but it is good that you also realise that they have years of training behind them and while they appreciate our questions and wanting to be equal partners in our own care, they like us to show some respect, to be prepared to listen and to accept that they do sometimes know best.  I can remember going in to see my first EP when I was so anxious to get my concerns/symptoms across that I gave him no opportunity to speak.  He had to firmly raise his hand and tell me "you came here for my opinion, now listen to my opinion".  That certainly got my attention Toni, but it was a bad start and I never fully recovered from it

Not one ectopic beat - wow

by AgentX86 - 2022-09-01 14:16:22

Yeah, it's best not to tell a specialist (in anything) his business. 😁

My strategy is to let him (any specialist) know that I know something and can speak somewhat intelligently about the subject.  Ask questions, get fairly high level, more precise, answers. I don't give solutions, just show that I can ask questions and understand answers at a relatively high level. If I don't understand, any specialist worth the name will be more than happy to explain further.  People naturally like to talk about their profession but need a common starting point (and some time).

Who knows

by toniorr11 - 2022-09-01 14:25:26

I'm sort of hoping that the lack of ectopics is because of the change in settings. The anxiety ebbs and flows. I'm sure it will reduce as time passes and symptoms reduce. 

The technician yesterday was very patient and supportive but I mentioned the negative attitude I'd received on the phonecalls to clinic and he nicely explained that they have 5000 patients that are monitored so they only respond to some things and not others. He wouldn't accept that I was told off for phoning but I didn't back down & made the point that I was told to phone and as a new patient I have no knowledge of their workload or their algorithms or policies. I wonder if that might get back to the individual. Hope so because they're abrasive on the phone. Once upon a time I wouldn't have been so assertive but I'm too old for this rubbish now! 

AgentX: definitely all about the questions. He did actually say a few times oh that's a good one! He also mentioned that it takes the technicians about 5years to train. I might have got that wrong. But I said I don't want to be an electrophysiologist but I want to understand the basics at least. 

Anyway, I look forward to actually meeting my cardiologist on the 13th. Not seen him since 1st February! But he's part of an extended team who are very experienced. Trust.... I'll work on it 🤣

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