Lots 2

Greetings!

Update: Visited EP this week and remain pacing less than 1%.  He also provided extraction contacts. Yay, though he was cautionary that they most likely wouldn't remove it. I have an appointment in Aug with one and am pending follow up with the others. Unlike he prior clinic, he'll cooperate with the extraction clinic.  So good news.  Ugh: the pacer app now displays the average years of battery life.  It's a bit disconcerting

A few questions/observations:

1.  Has anyone else had issues with their computers, cell phones, or tablets or an abundance of energy at your fingertips?  I can now hover over 6 inches away from the screen or mouse and change whatever is on the screen.  It's even more entertaining when I'm closer to the devices.  Worse, I get a lot of shocks around light switches, even with greater weather humidity.

I shut off the device app and tested my electricity fun, then shut off the phone's bluetooth.  Once I shut off the phone's bluetooth, it stopped.  The energizing moments seem stronger when the device is having a chat with my pacer.   Also, with the app off, the pacer seemed to cause a twing until bluetooth was turned off. 

I absolutely do not advise turning off pacer apps or associated bluetooth or pursuing this test.  I only did it because my pacing rate is super low and thus my risk was also super low.

Anyone else have the same energy issues?  

Mentioned it to the EP and he's never heard of it.  (Story of my life, then sadly, I'm always the first, i.e., the canary in the mine story, and cause a solution scramble...)  

2.  Energy seems to be spot on one day, then gone for 3 or more days.  Am told, settings are the lowest possible: lower rate: 50 bpm/upper track: 140 bpm/upper sensor: 130 bpm.  EP won't turn off my pacing part and simply let the heart monitor part function.  He indicated my settings were fine.  

Just not feeling well since this was implemented in Jan this year.

Most here post they feel energized and I'm only energized for a day or so, then no energy. 

Any guidance?

3.  It seems the internal stitches are starting to poke through again and I'll soon need a "stitch shaving".  The dermatologist wouldn't open the healed scar to remove them.  

Anyone else have mutliple stitch shaving issues?  If so, how/when did it finally resolve?  It's been over 4 months, so one would guess, the stitches would disolve by now.

4.  Still having site itching and pain across/down chest.  EP wasn't concerned.  Lucky him, he doesn't have to live with it.  Cardiologist recommended exercises.  They didn't help. 

Any suggestions or key words/phrases I can toss out to the good drs.?

Observations:

1.  Monday, I biked 5.4 miles, then had to rest for hours. Very unusual for me.

Sadly, later that day, my rest was interrupted with horrible shouting, screaming, and thumps/bumps/building shaking.  My not so lovely, and very much should know better, neighbor was arrested.  After his secure transport, my interview with police/Law Enforcement Officers (LEO's ) occurred.  (Sadly, I was absolutely not camera ready and will be forever embarassed. Never open the door without lipstick/make up or coiffed hair.  No sense scaring/scarring everyone for life... but I digress). 

Because of neighbor's very naughty behavior, I was shaking for hours.  The next day, I visited the station for additional incident information.  I'm very comfortable with our LEOs and think extremely highly of them.  However, I started shaking again.  

It's quite interesting that subsequent EP visit indicated heart only ramped up to 150 bpm 20 minutes before I rode the bike, and not at all during bike ride, nor high stress neighbor issue.  I found that very curious.  One would think my heart would race faster than a thoroughbred during a hotly competitive race.    However, biking was not good and I struggled (didn't go above 14 mph).  Now legs tingle, especially at night, I still shake when I think of Monday's fright festival, and have been without energy for days.  That bit is all probably stress related. 

It's fascinating my heart didn't quicken or down shift one bit - don't you agree?  

2.  I agree with others, once the pacer is implanted, it feels like we're kind of dumped off until the next appointment, and very little information is available.  The available information is absolutely not helpful and so watered down, it wouldn't burn in a fire.

Thanks dear ones for your time reading my long writing.  I so appreciate this site. 

Thanks for being so very helpful.  

Big blessings and prayers for perfect health.

 


9 Comments

Quite a list

by piglet22 - 2023-05-19 07:06:05

Rose

I think you will find that most of the things you come across in normal households/life, are not going to affect you or the pacemaker.

By now, there will have been enough evidence gathered from PM history that if anything hazardous would be well documented and you would be warned about it.

I am surrounded here by four computers, ethernet, Zigbee, WiFi, TV, two microwaves etc.

I tinker with electronics and electrics, power tools and the occasional 240-volt shock and can honestly say that I can't link any health problems with day to day equipment. The shocks are purely my fault.

You mention shocks from around light switches. In the UK, all electrical fittings have to be earthed and if you have the right materials, synthetic carpets, synthetic clothing, you can build up quite an electrostatic charge with a voltage in the 1000’s. If you insulate yourself with rubber soled shoes, you are going to discharge you charge at the nearest earthing point.

On the other hand, if the fixing screws aren’t properly earthed, there might be a problem with the wiring that needs looking at. I think in the US, you use 120 volts which is not as dangerous as UK 240 volts. I can tell you that 240-volts feels like having your arm pulled off.

Of course, you can run out of personal energy for any number of other reasons, like anemia.

Can't help with stich problems as these have always disappeared or successfully removed at the GP's

I will agree with the itching at the scar site. My PM is so close to the surface that I can feel details like the lead connectors. Sometimes, you just have to scratch.

I wonder how you would get on with the British health system. I don't think you would like it.

Every day here there is something about lack of access to GPs, long, long waiting lists for hospital treatment. There's a good chance if you asked for advice here, you would be told to go to the pharmacist's.

I went to an Urgent Treatment Centre for painful heel, probably plantar fasciitis. It was packed out. Waiting time? 2-hours minimum, so didn't bother.

I will agree that I certainly get the feeling that it's "OK, we've done our bit, see you in 10-years’ time". And yes, if you have concerns in the meantime, that's when it's not so easy.

Maybe we have to balance up the care we get to have got this far, and reduce our expectations. I can think or a few parts of the world where even a second-hand pacemaker would be a luxury.

Hope you get some answers.

Quite a list

by The Rose - 2023-05-19 11:42:24

Hi piglett22,

Thank you so much for your kind and detailed response.

Regarding the electricity, none of it happened prior to the pacer maker's existance.  That's what has me wondering. I could hover maybe 1/2 inch/1.27 cm's over the mouse pre pacer. Now I'm quite electrifying when the pacer app and bluetooth are active.  

YIkes about the itching.  Am saddened, I'm not alone and even more saddened, the healthcare is so awful in your country.  They want to bring it here and are inching closer with crazy costs and reduction in time.  We're only permitted 15 minutes with our drs and our pocketbooks are $500 or so lighter, unless insurance covers it.

Thrilled your itching has resolved.  Thanks for sharing.  

So appreciate all your guidance.  You're a dear.

my observations

by new to pace.... - 2023-05-19 15:44:46

Sorry you are going through this, after reading some of your comments . Wondered why you signed the consent form for the pacemaker if you did not want it?  They do not implant if you say no.

Do not know why you have your blue tooth on all the time?  I understand if you are not transmitting your information you do not need that on.   Why would you hover over your computer?

3. Most doctors can remove stitches without opening the incision.  I had one removed that was prutruding one time my a PT gal.

4. ichy take an allergy pill. 

You had wondered why heart did not race when you were confronted with your neighbor issues.  Guess the pacemaker was doing its thing to control your heart beats.  For that you should be thankful. 

new to pace

Lots

by AgentX86 - 2023-05-20 10:47:24

1. I'm am (retired) electrical engineer.  I was surrounded by high power, WiFi, Bluetooth, and just about everything else.   Much of this stuff was under development and not necessarily behaving properly (it had no software behind it yet so transmitted constantly).  I am dependent on my pacemaker and have had zero problems. 

As far a shocks on doors.  It's not possible with a pacemaker (not enough energy and no high voltage). An ICD could do all sorts of strange things but you'd probably not notice it because you'd be zapped at the same time.

2. Since you're only paced 1% of the time, your energy level is most likely coincidental. If you've had any medication changes, I'd certainly start there.

3. Internal stitches should dissolve but coming to the surface isn't unknown.  They end up like splinters so I can understand your pain.  No, no one is going to re-open the wound for something so "trivial".  A little pain is nothing compared to an infection.  An infection around a pacemaker can be fatal.  Rare but not ever a good thing. The leads are a direct highway to the heart.

4. Itching.  That's just the nerves healing.  Some have described it as "and bites".  Mine itched too but it goes away. When I had my CABG, I woke up one morning with my whole chest scratched up like I'd been in bed with a tiger (no, not her).  I notice that I had a split nail that was quite sharp.

It's normal but does go away with time.  Once the wound is completely closed (four to six weeks) a moisturizing cream may help.

Life

by The Rose - 2023-05-20 22:20:35

Hi Angry Sparrow,

So sad you've endured such a terrible experience.  So appreciate your sharing how to relieve the itch.  Hope you can find a homeopatic doctor (DO perhaps).  They're skilled in suggesting things like Nattokinase or Lumbrokinase, or NAC or so many other blood healing options.  Sadly, so many doctors are either controlled now by their hospitals or paid so much for pharma solutions or won't look at processes not covered by insurance and won't even look at alternatives.  I've experienced malpractice more times than I can count.  They stick together when that issue arises, so not much we can do.  It's most likely down to an unrecorded verbal statement.   I'm going back to my: only go when you need it practice shortly after interviewing the removal doctors.

Am thrilled you're in a better place now.

Prayers you can get the awful removed and never let fear destroy you again.

Thank you so much for sharing your heart breaking story.  

 

 

Obervations

by The Rose - 2023-05-20 22:35:06

Dear new to pace,

I never signed a consent form.  After being "staged" like a house in the hospital (normal room, then "step up" room, then suddenly ICU when I could still wander around, then given tests and medications that temporarily crashed my heart to a stage 3 block (they said it was permanent), they acted like I had no choice.  I do not have a type 3 block and they overmedicated me.  The medication combinations actually cause heart stress/arrythmias.  I simply had a cold/flu that triggered an auto immune response and needed fluid on my lungs drained a bit.   Might have also been caused by my upstairs neighbor using some sort of horrid chemicals and smoking, topped off with waking me up at all hours of the night.

They provided information to my regular doctor whom I trusted, but I believe not all the information was provided to him.  They made me feel as if I would die without it and had no time for a 2nd opinion.  I had lots of time, but needed the right temporary solutions.  They needed the free insurance money.

After the drugs were stopped and several pacer adjustments later,  my heart went from using the pacer approx 50% of the time to less than 1%.  I also believe my pacer was incorrectly set.  Once I was told my pacer was set to keep my heart in 2nd gear.  Yep. 

I actually felt worse whilst in the hospital.  The hospital is now over $250k richer for all their actions.  They also wanted to put me on a ventilator when I was breathing on my own.  They lost $30k because I refused.  I was their cash cow of the month.

This week, I read they were broke and one of the highest receipients of gov covid money during the last few years.  It's a very top rated hospital.  

I'm still not feeling much better and lose energy. 

Thanks for the stitch information.  I had no idea that was the reason.  No one ever explains and I can't ask all the questions.  I have a few more starting to poke through again.  Will have them shaved again.

Interesting the pacer didn't race above my threshold then, but way earlier in the day.  The pacer didn't trigger at all that day.  Not at all.  

Appreciate your kind suggestions very much.  

Losts

by The Rose - 2023-05-20 22:47:09

Hi AgentX86,

Bluetooth is on because the Medtonics app requires it to communicate between the pacer and my phone.

Wow you had an iThe shocks are suddenly happening and they didn't in past.  Neither did the hovering over my keyboard or screen.  For example if I'm moving my hands to touch them, the issue starts.  Perhaps I have enough natural energy, and don't need the extra pacer energy?  It's very strange.  

Appreciate the nerves healing information.  If I wasn't in so darned much pain from the pacer area,it and the wires clanging into my collar and shoulder bones, it probably wouldn't be so bad.  I also have pains across my chest, down the center and down behind my left girl bit and at the end of my ribs.  I roll over and I have all those pains.  And they aren't little pains.  I can't hug people without being in pain for hours at the pacer site.  I love hugging people.  It's truly no fun for something only providing less than 1% support.  It's a few days short of 4 months.  

Thanks for sharing the tiger story.  "The no not her" bit made me smile, but so sorry you experienced it.  Am surprised the stitches haven't disolved after all this time.  I'm wondering if they're the pocket stitches which are silk?

So appreciate all the other guidance.

Medtronic & Bluetooth

by AgentX86 - 2023-05-21 01:13:24

I also have a Medtronic with Bluetooth.  It does not transmit constantly.  It's not really BT, rather BT/LE or "low energy".  It's only speaking when spoken to.  It would take far too much energy to transmit constantly. 

If you have a BT scanner (your phone works), see if your pacemaker is transmitting.  You can catch it doing its thing but not often.

If you're feeling something, it's not the pacemaker.

Disconcerting Feelings

by Penguin - 2023-05-21 06:44:00

Hi Rose, 

I'm so sorry that you've been through this. It's clearly upset you a great deal.  

When you feel like this it's best to raise the issues with the doctor who implanted the device and to bring someone with you who can take the heat out of the conversation - particularly if feelings are running high. 

Receiving a device without informed consent is an important omission. We can't consent to what we don't understand or know about and the consequences of this can be far reaching.  Informed consent is more than just signing a form! It implies that someone has taken the time to tell you what will happen, why and what the risks / benefits will be and that you have understood all of this and agreed to it. I

Informed consent is difficult in an emergency situation as you don't have a chance to 'consider the detail of the contract' and reflect / ask questions etc. before signing on the dotted line. 

I would explain how you feel (ambushed - I'm guessing!) to your doctor and ask them to explain their decisions, actions and the related costs to you. You need this feedback so that you can make sense of what has happened, deal with the feelings and hopefully move on from it. 

I hope this helps a little. 

You know you're wired when...

You have a little piece of high-tech in your chest.

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