Can a device clinic wipe out a PM’s data?

Oh my!

by PacedNRunning - 2020-11-08 05:34:55

First of all. There should be stored data about your lead measurements going back 14 months. So they should be able to see it. Maybe not all the specifics but should be able to tell if the lead was out of range after implant. Second, I NEVER wore a sling. I had basically no arm restrictions and honestly if a lead comes out that easy. It's operator error not that patient. It's rare it's something the patient did. I was running 2 weeks posy op and I can assure you a heart rate of 170bpm is fast enough to jerk the leads out But yet no one says keep your heart rate under a certain rate. I would definitely find a new doctor. His behavior is unacceptable!  I'm sorry all that happened. 

data

by Tracey_E - 2020-11-08 07:36:26

They always partially wipe it when they interrogate but they would have a record of the download. There's a limit to how much data the pacer holds. 

You need a new EP asap. The sling is never worn after the first 24-48 hours, that's how you end up with a frozen shoulder. Blaming you? Absolutely wrong. There's a small chance you contributed to dislodging the lead, but it's much more likely it was either not in a good spot or it didn't stick. Most of the time it's just bad luck, no one's fault- not yours or the surgeon. Sure sounds suspiciously defensive tho! 

Not seeing for 6 weeks for any reason is ridiculous. If something is wrong, they need to be on it. 

It is time for a new doctor. I would not trust that one. 

Thank you so much Tracy.

by MakeAmericaPaceAgain - 2020-11-08 14:38:21

Thank you for the affirmation. It means so much as I am quarantined for COVID and can't get out and about and check my usual contacts. I was taken by hub to ER after months of extreme shortness of breath. I never once felt my heart beat so was shocked I needed PM. Knew nothing about them and had never heard of an EP. Went w/ him knowing nothing abt him as was told needed PM urgently. This EP is known (but I did not know this then) for poor bedside manner. He will not spend any time w/ patients or explain a single thing and was beyond irate  I asked anything. Thank you so very much for conveying your understanding. I was so stressed that I had an episode of Transient Global Amnesia last Tuesday and lost my memory for about a day. Very, very weird. Husband took me to ER for two nights in hospital. Nothing wrong with me. Memory returned. During memory loss period I did not know I had a PM or who Dr.Shah was/is or that Trump was president! (So glad he's gone.) Thank you so much❤️. Can't wait to see new doctor in big city. 

To: PacedNRunning

by MakeAmericaPaceAgain - 2020-11-08 14:57:07

Thank you so much for your reassurance about the data from two months ago still being in my PM and not wiped out. I can't believe this EP committed in writing Twice in his Doctor's notes (I asked for Medical Records) that "patient caused the lead to dislodge by discarding her sling before she ha4d Doctor's permission." I have "proof" from my Fitbit that my HR never went above low 40's right after surgery until after revision surgery - but want real proof from stored data of when lead failed (which I think was shortly after PM implantation - a micro-dislodgment. Thank you for caring enough to write. I've been suffering terribly from him "yelling" (my understated husband's term) at me about my "fault." Never ran into any medical professional like that. Insane. And all of his work as an EP depends on physics and physicists and he would not even nod to acknowledge my always polite hub. Strange. Can't wait for full validation from a new Doctor in big city. Everyone in this small town is connected to mr. bad doctor so I asked don't think I can get an independent Medtronic interrogation that goes back to right after surgery in this town. So I must try to be patient and wait a month for appt. with new Doctor who seems excellent and likes to communicate with patients. Thank you so, so much!❤️

Data

by AgentX86 - 2020-11-08 16:21:42

Even if your pacemaker data were wiped clean, you could get all your information from your patient records. Perhaps not the detailed data but there should be enough to support your case, if there is one. If your records have been destroyed, the case is clear. Ditch the  bum anyway but make sure all of your records are transferred. I'd go further, to your state's medical board and try to get his license yanked. He's a menace. BTW,  shaking his fist in your face is assault.

All that aside, I wouldn't trust a small-town EP with anything. There is a huge difference between the best and the second tier. This is one area that you really need the best. The difference is much greater than that of general cardiologists, more like brain surgeons.

You can't trust a FitBit and it'll be evidenced of nothing. No one will take the records seriously. I know how you feel about it. I could easily tell a couple of days ahead of time that my meds/ablations had failed because my FitBit would suddenly go from 50ish bpm to 80-90 bpm. I knew that flutter was right around the corner. I'd go to the ER and they'd pat me on the head and send me on.my way. It took a couple of rounds of this to convince my cardiologist that I knew whatwas going on. 

EP Gods

by ROBO Pop - 2020-11-09 13:18:10

After reading your story I realized you had the same Electrophysiologist as I did awhile back. But based on your location, it must be his brother.

Look I've found most surgeons (EPs can be grouped in there) have a God complex. Though my EP was highly thought of in the medical community I fired him after he nearly killed me. That being said, to my point...I would highly recommend you not say anything negative about him to other doctors, it will have negative consequences for you. If you feel that strongly about malpractice then by all means take legal action but don't share negative thoughts within the medical community. 

Couldn't agree more ROBO Pop

by Gemita - 2020-11-09 15:09:13

and is the message I have already conveyed to MakeAmericaPaceAgain.  I once made that mistake of telling my current EP just what I went through with my last one.  It was clearly the wrong approach and I should have held back.  It was a bad start and put my new EP in a very difficult position.  My old EP was clearly a colleague and a friend who worked in the same hospital.  

MakeAmericaPaceAgain, I hope you find your next EP helpful and compassionate.  I think it would be perfectly acceptable to let the new EP know that you didn't quite see eye to eye with your old one (but only if they enquire) without going into further detail.  Focus on what you want to achieve for the future, rather than going over old ground.  I really hope for the very best for you.

To Gemita

by MakeAmericaPaceAgain - 2020-11-10 16:44:02

Thank you again for your excellent advice. You are an exceptionally caring and lovely person to share so much of the information you have disciplined yourself to come to know. So impressed that you have learned to read EKGs. May I ask what books, videos or learning materials you have found most helpful in learning to decipher EKGs? Huge learning curve for me as before my PM surgery (same day as catheter ablation for extra electrical pathway) I had no clue as to any heart-related knowledge - no heart problems in my family - and I never felt my heart flutter - even though in ER it was going quickly from 30 to 220 and back. And was way, way wicky wacky. Knew I was having many spells of pre-syncope, ect., but never imagined heart could be problem. Admitted to hospital - told I was way bad off - needed immediate surgery and did not vet small town EP. Was overwhelmed and not thinking well and hub was just desperate to get me better and because he has CLL - we did not want to go to big city -50 miles away - as we do for our Dentist and other Medical needs (small eye surgeries, ect.) I must get over this bad EP who thinks he is GOD in this small town world hospital that serves many poor, black belt counties in Alabama. Have learned. Trying to move on. Your advice is so perfect, needed and excellent that when I meet my new Cardio/EP on Dec. 9, I am taking a screen-shot of your completely correct and on-target message about not being crazy enraged person at my former EP - but am calm, sane, person (ha! I can pretend) who wants to know the big picture of taking care of my heart health and getting my triglycerides down from 214 (all other lipid levels are in range). Had GP do lipid panel (EP did not -although he put hyperlipidemia as one of my final two diagnosies) . This has been a huge wake up call for me about artery disease and maybe having plaque in arteries. Have cut out salt, never smoked or drank but a tiny bit, am moderately - but barely overweight (have lost 15 pounds since PM surgery - so close to being w/in weight limit). Am trying to do everything to have healthy heart. Again - love you and your message so much about when see new Ep in big city - that I am screen-shot-ing it and printing it and will keep it in my hand in my notebook - on first page when I go visit new guy. Thank you so very, very much. I am going to get sane again. I hate being so angry. Thank you. Thank you. Thank You. ❤️🥰❤️

To ROBO Pop Thank you for supportive message.

by MakeAmericaPaceAgain - 2020-11-10 17:22:41

Dear ROBO Pop: Thank you so very, very much for your comment and completely needed and sane advice on how to comport myself when I go to meet new Cardio/EP in far away location. I have vetted new guy and know that what I truly want and need is just good information on how to best take care of my heart. I never once suspected I had a heart problem until Husband took me to ER after months of pre-syncope (didn't go to my GP as he & I were/are strictly quarantining due to hub's CLL leukemia) and was told needed immediate PM or risk of death fairly soon. So went with local EP without vetting him. I am angry with him but with your help and Gemita's help and my very sane husband's help I am trying to put old, (idiot - sorry) EP far in the distance and go to see new EP Cardiologist in big city far away (will be first time out of county since February and quarantining) on Dec. 9. This new guy seems to check all the boxes of what I'm looking for to get my heart as healthy as possible and get rid of any arterial plaque - as that is big killer. Will have to live with PM jutting into armpit but at 67 - was never going to wear a bikini again. Like message from Gemita - am screenshoting your perfect message of needed advice for first (and all) visits with new EP/whole heart cardio guy) and taking your message with me and it will be on first page with Gemitas of my notebook I carry when I go to talk to new guy. Thank you so very much for good advice. If I can pull off not having an angry tirade against old EP - this will get me what I really want - good information about the health of my entire heart and a better, longer life. [I have been having a real anger problem, I know. Was so stressed was in ER last week for Global Transient Amnesia - maybe brought on by stress - completely weird experience and I will never remember those hours when I forgot I had a Pacemaker, forgot who bad EP was, and even who was President. Husband thought I was joking at first. But then he realized I had lost my memory (remembered him. He said in ER and hospital I was the sweetest person ever to everyone - like I used to be before I met Mr. Bad, arrogant EP and started obsessively obsessing about him and making myself ill in the process. Having Global Transient Amnesia is weird and neurologist says I will likely never have it again.) Thank you so very much for responding with much needed advice. 

new doc

by dwelch - 2020-11-12 05:46:25

new doc, new doc, new doc....

I have had a handful or more now not because I fired them only fired one.  Moved a few times, stupid insurance companies fighting and refusing to let me see docs outside my insurance, etc.  Almost all of the ones I have had are good, and caring and interested.  Only one was a jerk and treated me like a lab rat.  Sadly it takes time for first time patients, but hey, if you dont like the next one, the one after that may be right in line with a 6 month checkup, if insurance will pay for it, change docs each time, otherwise annual checkup...

Dont know where you live and none of my business, but if it is a rural area follow the same rule as an injury or other, if it isnt going to kill you keep driving until you get to a big city.  One doc was three hours away each way.  Another one hour away, next town over. (well within a big city they may be half an hour to an hour and in the same time)  Love my current doc, the practice has a number of docs, one or two do the surgeries, she does just EP stuff, worries about settings, does the face to face, etc.  One of the surgeons is the guy you want to see so they tell us if you need a lead removed in this area...

Your experience sounds horrific compared to what the rest of us have had to deal with.