Full of questions

Hi, I have had a pacemaker for 3.5yrs now and after some recent issues I stumbled upon this site....thank goodness.
I was given a pacemaker for Bradycardia (21bpm at rest) at the age of 48. Since then I took up running, lost a lot of weight and live a very healthy active lifestyle. In August I had my bi-annual checkup, ecg, echo etc and went home. By the time December rolled around my exhauastion was worse than it had ever been before the pacemaker was inserted. A visit to my GP resultedin blood tests which found I was very low in iron, but not enough to cause such exhaustion. January saw me sitting in my lounge room with 3 paramedics ( one MICA) looking at a 12 lead ECG telling me that the pacemaker wasn't pacing. My heart rate dropped to below 20bpm. I was taken to hospital where the did another ECG with much better results and blood tests all clear. A second ECG showed non-pacing and a 3rd ECG was good. I was eventually sent home and saw my Cardiologist 2 days later. I had another ECG, Echo, CT scan and pacemaker check and was told everything was fine. I went back in Feb for my regular check and asked for an explanation but was told that it wasn't the pacemaker. The exhaustion suddenly disappeared and I am back running my 1/2 marathon distances every other day and te weight is going that I was rapidly putting on whilst I was so exhausted. (Is that another clue, my diet didn't change but the weight gain was terrible.)

After being on this site I have come to realise just how little I know about my pacemaker settings etc.

If anyone can shed some light as to what might have been the issue with the 'January' episode that would be awesome. I go for 3 monthly checkups now so at the next one I think I will have a whol lot of questions.

(Pacemaker is set at 60 to 180bpm)

Thanks and cheers
WendyC

10 Comments

Readings

by WendyC - 2014-04-08 07:04:46

Thanks to you both for responding. Firstly, I knew something was amiss when I experienced the old pre-pacemaker feeling when the heartrate would drop to 21 and beat again after 2secs. When I went to the Cardiologist a few days later, the Tech said there was 'noise' on a lead and the cardologist fixed it a few days later.

The exhaustion came on from about October and was chronic by December, Much better after the January episode and completely back to my 'good self after the last pacemaker check in Feb.

In January the local hospital was on the phone to the Cardiologist at the bigger hospital in another town as things were so messed up that the Dr wanted me to be sent to the major hospital so that they could thrombolyse me. Fortunately everything started to right itself, the pain behind the shoulder deminished and I was sent home with strict instructions to see my cardiologist asap.

Based of the questions and information you have both provided so far I well see if they will give me my readouts and I will also put together a list of questions.

I have come a long way with my weightloss and fitness and I have big plans for my running this year. This episode put me back a wee bit but I will do whatever I need to for it not to happen again.

Once again wonderful people, "Thanks for your help".

Cheers
Wendy.

P.S. Re the 'App', I will get it when I am town next. :)

Good Morning Wendy....

by donr - 2014-04-08 08:04:47

....from 12 time zones away! (More or less.)

Your situation intrigues me - from the engineer's standpoint, that is.

Here's why: We talk about PM Hosts being in denial about their hearts not working - this strikes me as a case of a bunch of medics in denial about their PM not working! Look what they did - ran a bunch of ECG's, hoping that one of them would finally show that the PM was good. Well - it finally happened, & now you are off & running again (literally).

Like you, I'd like to see an explanation as to WHY your PM was NOT putting out pacing spikes. At least that's what I interpret your report to mean when you sat in the lounge watching a 12 lead ECG tell you that the PM was NOT pacing. IF those spikes were present & your heart was NOT reacting to them, it sounds like the spike voltage was not high enough to cause your heart to respond - but that is a DIFFERENT situation than the PM not pacing. It's either a lead failure or an implant site failure.

Did they NOT run a complete set of diagnostics on the PM to find out lead impedance, etc? That would tell a lot about the state of the leads & their implant site. Still, even if the impedance were so high that the leads would/could not pass a current, the PM's voltage spike should still show up on the ECG.

Could you focus a magnifying lens on the period between last Aug & Dec, when you felt exhausted? Did the exhaustion come on you slowly, or did it happen suddenly? How long after it occurred did you go to see your GP? Did you ever take your pulse during that period? Or at all? Sounds like you are NOT fixated on what your HR is.

How 'bout focusing another magnifying lens on the period when the PM supposedly came back to functioning? Did you feel better instantly, or was it a gradual improvement?

One comment - IF your PM continues to work correctly, you will NEVER get an explanation for January.

Again, from the engineer's viewpoint, you appear to have an intermittent electrical failure in the PM - at least that is what I would think, based on your observations. Those kind of failures are nearly impossible to diagnose because they don't show up often enough to catch them w/ diagnostic equipment. ESPECIALLY when the people doing the diagnostic analysis don't WANT to believe what they are seeing on the equipment.

Electrical devices are NOT immune to this kind of intermittent failure that drives us nuts. I had a lead fail after about 4 yrs that took literally weeks to diagnose because it was giving totally illogical data to the diagnostic equipment & the evaluators.

A simpler example that happened to me this weekend - but NOT in my PM. We have a light atop a tall steeple on our well house controlled by a little motor driven timer switch. It went out, so we went up & put new bulbs in the sockets & turned the power back on. Bulbs glowed weakly for a few seconds, then went dark. I got out my trusty electrical multi-meter & started checking the system for voltages. They were exactly what they should have been, but the bulbs stayed dark. My final conclusion was that the switch HAD to be bad in a way I could not determine w/o opening it up & looking at it. So I did - it was NOT a trivial task to open it up. As soon as I had it so I could see it the answer became obvious - There were a bunch of dead, fried, ants between the contacts. Cleaned out the ants, put it back together & voila! there was light.

Maybe you got some ants in your PM? (Big ol' grin)

Anyway - that's my take on your situation. It would NOT be the first time in history that an electrical device failed in this manner.

C'mon, someone - prove my discussion wrong. Wendy is waiting.

Donr

A Few More Questions.....

by donr - 2014-04-08 09:04:29

...Thanks for the info, Wendy.

BUT - as usual, a few more questions.

Where does the pain in the shoulder come in?

What is "Thrombolyze"?

Noise on a lead - that is new info - HOW did the Cardio "Fix" it a couple days later?

Noise on a lead can screw things up totally - make the PM think that something is going on & inhibit itself so it doesn't send out pacing spikes! That would reduce you to whatever your intrinsic rate was - Bradycardia comes back.

What did the local hosp find that was "Messed up" enough to send you to a larger hosp.

Donr

Ask for Your Readings

by NiceNiecey - 2014-04-08 11:04:53

The best feature of my PM is that you can't hide information from it! My cardiologist has even looked at the readings and said, "What was happening on January 17 at 1:38pm? You were in Afib for x number of minutes." See if you can find out anything.

I have a cool little app on my iPhone, too, that measures my HR and I do it a few times a day, especially if I think something feels weird. It's called runtastic and the tag line is perfect for you: "makes sports funtastic." It was either free or just $1 US. It keeps track of my HR, time of day, how I claim I feel and I can type in comments.

Admittedly, I would be very distressed if I went through a period of my device not working. I'll go with Donr's ant blockage theory just for grins.
NiceNiecey

And a Good Evening to you...

by donr - 2014-04-09 09:04:17

...again from 12 time zones away!

Wendy - I'll learn to speak Australian English Yet!

Thanks for your patience w/ my questions.

I'd say that you should be asking them about the things I've asked you about. They are the keys to what happened to you.

I missed one - what is a Mica Medic?

IMNSHO, the "Messed Up" tells me that there is really something intermittently wrong w/ your PM's electrical guts. If it is giving inconsistent data to consistent diagnostic equipment, it has to be the culprit!

If you now understand that electrical "Noise" is any voltage that does NOT belong there, you can understand that the noise may well have been the problem the whole time.

Do you have ANY idea what the Cardio did two days later when he fiddled w/ your settings? That is a good question to ask! There are many settings hew could have changed. If you can find out which, that would give us a pretty decent idea what was wrong!

Ask them to check for microscopic ants in the device. LOL

Donr

And Good Morning to you....

by WendyC - 2014-04-09 10:04:10

You are such a hive of information lol, and thank you for your patience with me. I feel a bit of a dill really. :(

A Mica Paramedic is a higher level of Paramedic.

The more I have spoken about this with you the more the pieces fall into place. (Did I mention that my blood oxygen levels were at 95% on THE day in January. That tells me lots now).

I will see how I go asking for the readings but not sure how that will go down. I have decided that if I am not happy with the answers I get I will be asking for a referral to another Cardiologist.

Lol as for the 'microscopic ants', they would probably use that excuse they have tried everything else.

My next appointment is in MAy, so I will keep you posted.

Thanks once again.
Have a good one.
Cheers
Wendy

More Info

by WendyC - 2014-04-09 12:04:25

Thanks for asking me questions as it makes me even more determined to ask more of my health professionals instead of giving them complete trust....

Thrombolyse....the dissolving of clots (they must have been thinking I had one).

The pain in the back shoulderblade was the main impetus for me calling an Ambulance in the first place. I then called a friend who is the Mica Paramedic who rushed to the house.

The 'messed' up was the 3 seperate ecgs that they did where only the middle one was normal.

The noise was 'I am assured', sorted via adjustments when they did the pacemaker check after the emergency at the local hospital. All becoming a bit clearer now that you explain what happens when there is 'noise'.

Are there any really specific questions I should ask at my next check up in May.

I am so glad I joined this site. Thank you all so much.

Questions from 12 Time Zones Away...

by donr - 2014-04-13 08:04:08

.....again. Wendy - back to the pain under the shoulder blade.

How long did it last? How suddenly did it come on? Exactly what were you doing when it hit you? Did it hurt when you breathed? Did it hurt when you moved your associated arm? Did it hurt when you were lying still? Did the hurt change with you assuming different positions?

So what brings this up? Back when you were still a toddler, hanging on to your Mom's skirt, I had an incident like you appear to be describing that landed me in the Hosp for overnight observation because there was a fear that I was having a heart attack.

It turned out t be a pulled muscle right under the shoulder blade. All I did to trigger it was to stretch my right arm out into the Fridge to get a can of Coca-Cola. The pain was so sudden, so intense that it literally dropped me to the floor. Took days for it to resolve itself. Took them 12 hours to feel confident that it wasn't a heart attack.

I have seen this occur in one other person, except he was reaching forward to grab a lever on a forklift.

Muscles work based on nerves that send electrical signals from the brain to them. Is it possible that a pulled muscle could be generating NOISY electrical signals from pain that your PM was sensing? The shoulder blades are directly behind the heart. I do not know the level of voltage that the PM has to sense to inhibit itself, but I offer this as a possible explanation of the occurrence when you called the ambulance.

It is as least as good an explanation as microscopic ants inside the PM case!

Donr

Cardiologist Visit

by WendyC - 2014-05-16 01:05:04

Well that visit went well....not.

I layed bare my concerns with the pacemaker and raised the questions that I had put together before the visit. The outcome is;

A: It is just me.

B: Pacemakers don't fail or have faults.

C; There is no such thing as 'noise'. What is 'noise'? I don't know what you are talking about.

D: Come back in 2 weeks for a stress test, echo and ECG to make sure your Pacemaker is pacing correctly, and to make sure there are no blocked arteries. ????????

Off to my GP next week for a referral to a new Cardiologist.

This is all very frustrating.

:(

Comments Appreciated

by WendyC - 2014-05-26 02:05:01

Well that visit went well....not.

I layed bare my concerns with the pacemaker and raised the questions that I had put together before the visit. The outcome is;

A: It is just me.

B: Pacemakers don't fail or have faults.

C; There is no such thing as 'noise'. What is 'noise'? I don't know what you are talking about.

D: Come back in 2 weeks for a stress test, echo and ECG to make sure your Pacemaker is pacing correctly, and to make sure there are no blocked arteries. ????????

Off to my GP next week for a referral to a new Cardiologist.

This is all very frustrating.

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I am just thankful that I am alive and that even though I have this pacemaker it is not the end of the world.