First Medtronic transmission

Some thoughts

by Gemita - 2020-09-30 18:05:56

Hello Sisterwash,

Nice to hear from you and to know that you have had such a good result, even though somewhat surprising.  I have to say though with electrical diseases of the heart, changes can occur quite rapidly, especially if the causes for say heart block are due to medication which is stopped, or to a heart condition which one recovers from, or from improvements in heart rhythm disturbances and so on.  In other words, electrical disease never stays the same and is very much affected by our internal environment, by electrolytes, by infection, by dehydration, by blood pressure, medication, other health conditions, by our age and so the list goes on.

Looking at your pacing percentages, your heart is certainly managing well on its own with only low requirements for pacing.  I wonder if you have had a quieter period, arrhythmia free and this is reflected in your low percentage of ventricular pacing?  I do know that when my atrial arrhythmias are active, my percentage ventricular pacing increases due to a pacemaker setting which switches pacing from my right atrium to my right venticle so as not to track my atrial tachyarrhythmias.  These are all questions though for your EP.  Has your medication changed?  Have your pacemaker settings changed ?  Has your LBBB improved ?  What was your arrhythmia burden over the period ?  Was your initial diagnosis the correct one ?   Clearly spontaneous improvements in heart block can occur.  You clearly still need your pacemaker but it is very good news Sisterwash that your ventricular pacing is only 13%.  You must be feeling so much better ? 

First Medtronic transmission

by Sisterwash65 - 2020-09-30 19:04:01

Thanks Persephone and Gemita for your thoughtful responses...To answer some of your questions, No medications have been changed. The only arrhythmia I’ve ever known I’ve had is Bradycardia, which led me to the PM implant. I have done extensive readings since May when all this happened and I’ve read numerous places that Betablockers are a known cause of heart block. I’ve been on Atenolol and then Metoprolol since 2007. And I’m still taking it. I thought once you had Heart Block, That was it. I never knew it could spontaneously correct itself. Especially since my VP was so high on June 30 ! I am possibly reading too much into this so I’ll have to wait and see. 

However, I feel so much better, have more energy etc. So I am thankful for this gizmo in my chest ! I will,say I really like having the Medtronic My Care Link app. It really makes things easy and I can track my activity level, etc. Also kind of scary when you think of all your data “out there “ who knows where and what is being done with it. But that’s the age we’re living in I guess !

Thanks again !!

Beta blockers

by Gemita - 2020-10-01 04:16:35

Hello Sisterwash,

Yes I do now recall you telling us that you have high blood pressure and have been on betablockers since 2007.  It is hard to know whether these meds have contributed to your heart block (worsening bradycardia) but they certainly wouldn't have helped.

I have bradycardia/tachycardia syndrome and I clearly recall my doctor telling me that they often put pacemakers in patients so that they can continue to give meds like beta blockers and other rate control meds which could potentially make their condition (bradycardia) worse but with the pacemaker implanted this can be controlled to keep the heart rate from dipping to dangerously low levels. 

Whatever has happened and whatever your pacemaker settings are, has clearly worked for you, so I wouldn't necessarily be overly concerned.  However I would still gather as much info as you can so that you can have a meaningful conversation with your EP when you next see him.  Perhaps at the top of the list a question about whether your betablocker(s) have caused your bradycardia/heart block and whether an alternative blood pressure med should be considered moving forward?  

I am glad you are managing so well with your My Care Link app and it is giving you some good feedback.  Are you able to see anything else apart from your activity level ?  My Medtronic pacemaker has been programmed  for use with my old My Care link hardware which I used for transmission of my Reveal Linq implant data to my hospital clinic (implant now removed)   I haven't started using it again or downloaded the App because I was told they needed to see me in clinic periodically because of my arrhythmias but it is good to know the facility exists for transmission of data.  I would hope our data is fairly secure (only goes to Medtronic and our pacemaker clinic who holds our records) but as you say, who really knows !!

Medtronic transmission

by Sisterwash65 - 2020-10-01 07:55:04

The My Care Link I have has a number of headings. 1.) My Heart device tells you all pertinent information about your PM. 2.) My transmissions is another tab which shows the dates of your past transmissions and the date of next one.3.) My Vitals Tracking which you have to put in yourself. 4.) My Symptom Journal , again for you to record. 5.) Physical Activity which shows a graph, it’s shows day, week and month activity, which is my favorite.Hours and minutes and averages. I find it motivating ! 6.) Also has a tab for Education, which answers FAQ’s 7.) My Clinic has name and phone of your local clinic.

At the top of the screen that has all these tabs is a box marked ACTIVE showing that the app and the PM are connected. I’ve been surprised at how often it says, “ Last communication between your heart device and the app: 1 Oct 2020, 6:49 A.M. Many times throughout the day ! 

There is an interesting article from January 27, 2018 in The Atlantic. It was written by Neta Alexander. Title is My Pacemaker Tracking Me from Inside my Body ? It’s really thought provoking. Google it if you’d like to read it.

i really appreciate you answers and I’m so thankful for this website.

Blessings !

First

by AgentX86 - 2020-10-01 13:52:37

Hi SisterWash, from your pacing report (either one) it's apparent that you don't have a complete heart block or you'd be pacing RV 100% of the time. You evidently have some sort of second degree heart block. Your latest report tells you that it's "better" than before but that doesn't mean it was better an hour later. You do know that it's not complete, though.

I have one of the incredibly stupid boxes too. Mine insists on flashing very brightly (thunderstorm bright) in the middle of the night whenever it's been bumped during the day. It takes several tries to get it placed back on its cradle so it stops flashing.  It also has to connect via the puck. Though my PM has Bluetooth, it's too dumb.

First

by Sisterwash65 - 2020-10-01 14:05:48

Hi Agent X 86, 

I got a Summary sheet from my first device check back on June 30 and at the top it had listed “ Frequent 2nd and 3rd degree AV Block “ I do know that my first pre syncope episode was in September, 2019. No symptoms until late April, 2020 when I almost fainted again. Shortly after that I began to have shortness of breath and fatigue. Then on May 27 I saw my internist who ordered an EKG. He also sent my cardiologist a text and his office called me and I was in there the next day. That’s when I got my PM ! So I think my heart blocks were intermittent. I just hope I can keep these good numbers and not develop any arrhythmias or other problems !!

Thanks all. 

How do you feel?

by Gotrhythm - 2020-10-01 14:27:56

I understand why you would be curious. I would be too. But don't stress about your percentage paced numbers. They can change for all kinds of reasons, most notably as a result of changes to your settings. Over ten years of being paced, I've seen my percentages go up, go down, and go up again.

It's important to remember that it takes a while for your heart to adjust and settle in to being paced. You've had your device a relatively short time. The heart itself needs to beat regularly in order to get all the oxygen it needs to operate well. I wonder if the change in percentage paced reflects improvement in your heart's ability to function now that the upper and lower chambers are not being intermittantly deprived of oxygen, but instead are working together smooothly?

Whether the percentage paced goes up or down, what matters is that you feel so much better. How we feel is the most important--some would say the only--measure of whether our pacemaker is working the way we need for it to.

Keep asking questions. The more you know about your condition and your pacemaker the stronger role you can play in management of your health. And frankly, the better treatment you will receive.

How I feel

by Sisterwash65 - 2020-10-01 15:55:38

GotRhythm, your post made me think of this !!! My Atrial and Ventricular Amplitudes when I got my PM were set at 3.5 volts. At my device check on June 30 they were both lowered to 2.0 volts. This is the only change I can see from my paperwork. So for the past 3 months I’ve had this “ new” setting plus my heart has had some adjustment  time as well. 

This is why I love this site so much !! So much helpful information from people who have had the experience. I have spent hours during this  

lockdown reading everything I can about pacemakers and the heart. I firmly believe you are your own best advocate. And to do that successfully you  must educate yourself !!

Thanks so much.

Update on First Medtronic Transmission

by Sisterwash65 - 2020-10-01 21:38:34

Well...We all know what they say about something that sounds too good to be true, probably is. 

I got a call late this afternoon from my EP’s office. He had looked over my transmission and wants me to come into the office on October 27. The device rep will be there that day. He believes something isn’t right and it’s related to “ capture.” I was to.d it’s not an urgent concern but it needs to be checked because it can cause rapid battery depletion. 

Just wanted to let y’all know because those numbers were hard to believe !

Now it’s time for me to start some intense Google searches and read up on loss of capture. 

Good night all.

Capture

by AgentX86 - 2020-10-01 22:31:18

"Capture" is when the heart muscle responds to the pacing pulse.  Since they reduced the voltage of your pacing pulse so much, it's now not reliably causeing the heart to contract.  The voltage is usually set high at first, until the heart gets used to pacing.  Your EP has probably gotten a little too agressive dialing it back.  There are automatic settings to track this but they're usually turned off.  At least my EP doesn't trust them.

You're right.  Your best advocate is you.  You're well on your way to learning what you need to know to be able to communicate with your doctors effectively.  Most appreciate this effort and will spend more time with you than someone who doesn't show interest.  It's a normal human response to talk about their job/interest. Take advantage of it.  ;-)

Some questions

by Gemita - 2020-10-02 05:11:49

Hello Sisterwash,

You are having to learn fast and I hope this latest news is no cause for concern.

Question:  how were you feeling before your Atrial and Ventricular Amplitude settings were lowered to 2.0 volts on 30th June?  Were you feeling well, as well as you are now?  If the answer is yes, even if a change to this setting has to be made again, this may not affect how you feel and isn't that what really counts as Gotrhythm so beautifully expresses ?

Going forward though I would really want to know why there might be a risk of battery depletion with your current settings and if so, what led them to make any changes to your settings on 30th June?  What was seen?  I would particularly want to know whether your leads are sound and working as they should?  I found AgentX86 explanation on Capture very helpful.

I feel somewhat reassured though that they have mentioned there is no immediate urgency to get you in.  This would suggest they are not too concerned and that you are safe.  This gives you plenty of time to prepare some questions, but please don't get stressed over this.  Many of us are paced 100% without ill effect, so even if your pacing percentages were to increase again in the future, would this really be so bad if you are feeling so well?  And pacing percentages as others have already said, will be affected by pacemaker settings.  For example I am close to 100% atrial paced because my minimum heart rate is set at 70 bpm.  If this were reduced to 50-60 bpm, my atrial pacing percentage would no doubt be lower but I would feel awful, so try not to read too much into what this all means.

Please keep us updated Sisterwash and thank you for the My Care Link app information and the details of the article written by Neta Alexander.  I will have a read and let you have my thoughts in a PM.  Happy 😃 learning

Yes what news coming out of Washington

by Gemita - 2020-10-02 08:28:49

Sisterwash, we were at the GP's surgery this morning having our annual flu injection when we read your post.  What can any of us say, only that the sooner a protective vaccine is found, the better and the safer we will all hopefully be.  I am still, my doctors now believe, having lingering symptoms from an attack in early April (night sweats, fever, chills).  It just doesn't want to go away.

Take care Sisterwash and I really hope the results of your investigations on the  27th October will not reveal anything concerning.

Today’s news...

by Sisterwash65 - 2020-10-02 09:25:53

Yes, Gemita I know several people who have had it. My dentist, 56 years old and seemed healthy, passed away after being sick only 4 days. My granddaughter, 20 years old, had a very mild case and quarantined for 2 weeks. A close friend who is fighting Multiple Myeloma also got it and was hospitalized. Thankfully, she is now doing quite well. I’m sure we all know stories like this. 

I believe we are going to have to live with this virus around indefinitely!

Best wishes to all and I’ll post any update when I have one.