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Number of leads is somewhat controlled by 'fashion'

by crustyg - 2019-12-09 06:46:31

There's still debate in the EP community about this, and I'm beginning to realise that in some practices the PM implantion is separated from the PM programming and long-term cardiac management.  To my mind, this is odd, but that's purely a personal opinion.

For you, there are really two considerations: from where will the PM derive a variable heart rate to give you an increased heart output (by increasing HR) when you need it, and yet still give you a slow HR for sleep and resting? Two leads, the PM would have detected the atrial activations that you have naturally and then replicated them down to your ventricles with the lower lead, but rate response might do as well.  Secondly, where was the lead implanted: ideally (IMHO) it would have been a His-bundle lead.

There are a lot of factors that should/would have gone into your lead placement, box, settings, etc. which we don't know.  Your profile is fairly thin, we don't know why you have 3rd-degree HB, you don't say how active you are, but from what you *have* provided, it doesn't sound as though your PM is yet suitably programmed for your needs, hence no improvement in your symptoms.

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by Gussett - 2019-12-09 08:25:43

Thank you Crustyg for your response.  I don't know how I ended up with 3rd degree HB either except I know that I had a congenital right bundle branch block and lived with it without issue until this past fall.  I had been someone who exercised regularly at home and at the gym for many years but stopped about 4 years ago.  I continued to be fit enough to do all of my own housework, yardwork, painting, etc.  I am a 73 yr old female and have no health issues and no meds.  I still take no medication since the HB.

From reading posts on this site, I am realizing that I will have to educate myself if I want to return to a good life.  I cannot depend solely on doctors to get me there. There is no way I can accept not being able to be active so I will do my research and try different things once I am settled back home and have a full-time cardiologist.  (Flew into Ottawa from Florida when I became ill and have temporary care here until I get back home).

Cardiologist

by AgentX86 - 2019-12-09 09:36:05

If your only problem is HB, I'd be seeing an electrophysiologist rather than a cardiologist. If you have other heart issues,  then both. Cardiologists aren't specialists on  heart electrical problems. They deal with plumbing (structural) problems.

There may be useful external support too

by crustyg - 2019-12-09 12:12:32

Quite a lot of places offer something that translates into Cardiac Rehabilitation - rebuilding confidence, getting back to a previously comfortable level of exercise and enjoyment etc.  AgentX86 makes a good point, and your separation of person doing the PM and lead implantation and Doc who said 'one lead only' suggests that you may not be seing the most appropriate specialists.

Having said that, my state immediately post implant wasn't all that I had hoped either, but once my PM was tuned for my requirements things improved a *lot*: I can only hope that your experience is similar.  You are right, that you are the best advocate for yourself and the more you know and understand the better you can be at negotiating to get what you need - and which they may hear as 'what you want!'.  Read through some of GotRhythm's posts to see how effective this can be.

Best wishes.

Settings

by Gussett - 2019-12-10 20:53:18

Thank you so much for your help.  I have to say the thing I worry most about is not getting competent care.  Also when you hit your 70's, being written off by the medical profession becomes real.  My friends and I always joke that we need to look our best when we go anywhere near a doctor or a hospital because we have to look worth saving!  Anyway, This site sure has helped me understand my situation more clearly.  Cheers.

Advocacy

by Keithwhelpley - 2019-12-11 12:15:39

Gussett, everything you have said rings so true to me. The confusion over what the original cardiologist said versus what the implanting cardiologist said. The lack of competency even among EPs over settings. And the general wish that we old guys would just sit down and sut up. 

After 16 months of implantation of dual chamber, I got no answers for why I was feeling so terrible while others I know with pacemakers were able to get on with their lives. I was getting worse and worse fast. After the docs threw up their hands and prescribe a flecainide with no plan for figuring out my problems, I began researching and researching almost 24/7. I did find a possibility and set out to corroborate my findings. In my case (TOTALLY different from yours) it seemed to hang on my activated Rate Response. I asked my docs what that was all about since I don't have the condition that would warrant it. They ALL resisted changing the ORIGINAL settings. They claimed it would not make a difference. 

Just last week, I finally demanded they turn it off, if I didn't have the condition it's used for. They did. COMES THE DAWN. I have never felt better. It was literally like a switch. I'm riding my bicycle three hours at a time. Actively walking and will try swimming again. next week. 

The point of all this is RESEARCH RESEARCH RESEARCH and be your own advocate. Every one of my EP, even the one at Mayo Clinic had little if any skill in determining what the right settings should be. They always defferred to the original doctor's settings. If I was a doctor, I would be uterly embarrassed. There is a lot of information on the internet that comes from great reliable sources and then corroboration. 

Good Luck! Be the patient they wish would just sit down and shut up until you get the answers. 

SETTINGS

by Gussett - 2019-12-24 11:29:37

Well, I haven't posted since I went for my first pacemaker clinic visit on Dec.16.  The setting was the original 60bpm with the RR turned off.  I told them I was still SOB and weak so they turned on the RR with a top bpm of 130.   I have been so much better since.  My heart rate does go up quite quickly when I do stairs or small amt. of exertion so I will watch that to see if other setting changes are needed.  The clinic doesn't want to see me until June so will return to Florida after xmas where I can get out and walk safely and be more active.  So far, so good.  

Thanks to all of you for discussions.  I have learned so much and will continue to do research so I can advocate for myself.  Merry Christmas to all of you or Happy Holidays -however you choose to celebrate this season.

Just saying Hello

by Gussett - 2020-04-27 18:49:32

I haven't checked in for quite a while but wanted to say hello to all of you.  Got my rear back home to Sudbury, Ontario late March due to coronavirus.  A bit fed up with the lockup.

At PM interrogration Dec. 16, I asked that they turn on the RR and have to say I felt better after that.  My breathing not perfect but pretty good and I was able to go back to doing "almost" everything I was doing prior to implant.

Have been under the weather for 1 1/2 weeks - back pain and somewhat nauseous and weak - checking into it and waiting for tests.  Hoping it's not heart related but we'll see.

I check into the club regularly and find all your posts so helpful.  

Cheers