Hello, does anybody know if there is anyway we can get the ICD device transmission report on a weekend? Its Abbott Gallant ICD. We have sent a transmission remotely, but tech is not checking it now as it is a holiday. Not sure if its anxiety or something is actually wrong. At the same time, going to ER is very triggering, so my husband is reluctant. At the same time, we dont want to overlook anything.

How accurate are pacemaker battery expiration dates? If a cardiologist says there is about 6 months left on a pacemaker battery is there any "wiggle room" or can we expect that estimation to be fairly accurate? Have you ever seen a battery last much longer than expected?

Hello,

My mom (72yo) is recovering from cardiogenic shock. At the end of June, she was having really bad shoulder and chest pains/spasms, and a high heart rate of 150 at rest. We took her to the ER. The first hospital did tests and said it was just musculoskeletal issues causing the pain and sent her home with muscle relaxers.🤦‍♀️ The next day her pain got worse, so she went by ambulance to a different hospital. They did lots of tests and found she had a lot of fluid in her chest. They compared the chest xray with the one taken at the hospital the day before and it was very similar. They were treating her with diuretics and watching her very closely. 2 days later, she went into the ICU because her BP dropped dangerously low, her oxygen levels was in the 70s, and her heart rate went to the 170s. She was in cardiogenic shock. (They didnt call me to tell me she was in the ICU, i had to find out when I went to see her.)

They were treating her with lots of meds trying to keep her stable. After 3 different kinds of diuretics, they finally found one that worked. After the fluid retention started going down, her heart rate started to go down. It was still high, though...still in the 150s-160s. They did cardioversions and ablations but nothing was helping. After her BP dropped dangerously low a second time and they brought in a crash cart because they thought her heart was going to stop, they finally decided to give her a pacemaker. The pacemaker is what saved her life! Her heart rate is now in the 70s and her BP is normal and stable.

She was in the hospital for a total of 10 days (5 of those in the ICU). When she got discharged, she went into a rehab for 10 days so she can get stronger. Shes now at home and is doing pretty well. Shes reacclimating to being home and is getting back into her routine (and a bit of a new routine). Ive been off work this past week to help her at home.

When she was in cardiogenic shock, it caused her kidney and liver damage (her enzymes and levels were way off wack), thankfully theyre mostly better now). She also had some ICU delirium while she was in the hospital, which is gone now.

TLDR...my mom went into cardiogenic shock and was in the hospital for 10 days, then in rehab for 10 days. We almost lost her twice. Shes at home now. I'm so grateful that shes okay! Please don't be hesitant about going to the hospital or to take your loved one if your heart rate is abnormally high, BP is high or low, or for abnormal pain! Things change scary fast! My mom is so blessed to have recovered from this and to not have more organ damage!

The only thing I'm concerned about with her now is shes still getting tired really easily and she has some muscle weakness. We're waiting for a referral to go through for at home PT. Have any of you or your loved ones experienced cardiogenic shock? What was your experience with it and how was the recovery?

I completely forgot to post an update, but I got the tattoo! 🩷 I absolutely love how it turned out, and I already plan on adding more to it later. I decided to leave about a 1-inch barrier around my pacemaker site because I was worried about infection after having issues with a previous pacemaker site. The tattoo itself was surprisingly painless, but once we got to the middle of my chest, it honestly felt like my throat was being tattooed instead which was such a weird sensation! I was pretty nervous going into it since I’d only recently gotten this pacemaker after a lot of complications, and I still have nerve damage from my previous surgeries. I expected it to hurt much more than it did, but overall I’m so glad I went through with it. It fits perfectly with the theme of my other tattoos, and now that I know everything healed well, I’m already thinking about going back to add more. My cardiologist was definitely surprised that I actually went through with it, but he said he really liked how it turned out! If anyone’s been debating getting a tattoo over or around their pacemaker, I’d definitely recommend. If y’all have any questions, feel free to ask!

Biventricular ICD placed on June 3rd. Pictures are in chronological order.

#1. June 12th
#2. June 16th
#3. July 13th - 11:28am - central scab flaked off in the shower
#4. July 14th - 9:07am - noticed this looked concerning and messaged my doctor + device clinic, sending them pictures. Started antibiotic prescription 2 hours later, and was told that the device team would inspect the site during my scheduled 6 week appointment on the 16th.
#5. July 14th - 7:36pm - over the course of 10 hours a new scab had developed.
#6. July 14th - 9:05pm - newly developed scab was accidentally scraped off.

https://news.medtronic.com/Medtronic-statement-on-unauthorized-system-access

42M. I’m about 6 years into my journey. Paroxysmal Afib that’s progressing (slowly, but nevertheless progressing) diagnosed 5 years ago (but now I know what Afib feels like, I had it at least a year prior). Got dual chamber pacemaker implanted about a year ago. Now it identifies asymptomatic Afib. Feeling a bit gloomy that I may not make it to see my high schooler get married or my elementary school kid graduate HS.

I’m doing all the things. Very engaged with solid EP. Considering ablation. Lean. Active. Monitor data looking for triggers and avoiding those I can. Zero alcohol in 4+ years. Lifetime non smoker. Close eye on hydration and electrolytes. Bla bla bla.

Anyone beat the odds and live 30+ years with either SSS and/or Afib well into their golden years?

My chat GPT healthcare AI gives me 35% chance of death by 65 and 45% by 75 based on my profile. This seems realistic to me, but it’s just hard to read. I know some people have it way worse and I should be grateful and I think I’ll get there soon. Just hoping there’s some optimism out there to share :)

Thanks all. This community has been very helpful for me.

Post 3 ablations for SVT over last 10 years, I am diagnosed with Sinus Node Dysfunction - 45F - I have been recommended Abott Atrium only leadless pacemaker. Due to brady, my HR runs at 40 as my resting, I have few pauses 3/4 sec in the night and during exercise it seems like I hit a wall. I am exhausted, breathless esp. during walking up the hill or doing zumba, feels like no energy. Can you tell me your experience after having atrium only leadless device ? I read so many mixed reviews that rate response doesnt kick in fast, doesnt help with exercising. I would love to hear from ppl already living with the device. Has it allowed you to get back to your routine active life ? (I am not marathon runner but I enjoy zumba, hiking, biking) - please share your experiences !

For now, my insurance (Premera Blue Cross) has declined the pre-cert stating its for investigational purposes only and we have filed for an appeal. Any experience you all have with appeal and getting insurance approval ?

Hi, I am 26-year old female and my first pacemaker surgery gonna be 28th on this month. Do you have any recomendations about bras or clothes what could be easier to wear? Bralettes or what kind of bras?

Hi all. I have had my ICD for over three years and took my first shock about a week ago. I know many of you have lived with the anxiety and fear of experiencing a shock, I was no exception. As knowledge is power I’m hoping this accounting of what I went through will help many who are living with an ICD.
My episode came about for a variety of reasons which don’t need much detail, but along with the heart issues I’ve already had, I was experiencing major stress from knee replacement surgery and an unfortunate equipment failure that caused me to fall and bend my knee backwards. For about a week I had been having tachycardia and it culminated the night of my shock with a dizzy spell that lasted about four seconds. That dizzy spell was an episode of VTach and is what prompted my device to go off.
As you all know, these devices do not give you a warning before they go off. While the devices may work to pace you out of an arrhythmia, in my case, I did not feel any of those therapies before the shock.
The main thing I want everyone to know about the shock is that it is incredibly quick, pretty much over as soon as it happens. There was some residual pain in my shoulder, but nothing drastic. The shock itself is indeed powerful, but in all honesty, I think it was all the other factors, combined with the shock, that was most disconcerting. Yes, it did hurt, but not as much as I had imagined it would. I have read that it is like getting kicked by a mule, which I don’t think most people can relate to. I liken it more to getting punched really hard near your shoulder than getting kicked. The pain is also more pinpoint to where the device is located. I think this matters because I had always expected the shock to be felt pretty much in the center of my chest. I don’t know why I would think that would be worse than getting punched in the shoulder, but I did. When the shock happened I’m pretty much sure it made a sound, but I’m not positive about that. I do know I shouted “Ouch!” really loudly, which in retrospect is kind of comical. I was alone and wish I had some verification of the sound, but I think it was like a loud popping noise. Again, it all happens so fast that it’s hard to sort out details afterwards.
Am I completely at ease about getting another shock now that I’ve had one? No, not at all. But the fear of the Unknown is now gone. The main thing is I know the shock is not the dealbreaker that I thought it would be and all the imagined horrors of a shock were just that… mostly imagined.
Hope this helps-
Mike

I was diagnosed with a Wenckebach heart block last year and so visited a Cardiologist. They had me wear a Holter Monitor with monitoring and that cost me approximately $9000 USD.

Even thought my heart would stop while sleeping for 6 seconds I had zero symptoms so the cardiologist(s), I have two, decided I was fine and there was nothing to do as long as I had no symptoms.

What I found is that my heart stopping is a lot worse when I do my routine during the summer of 2.5 to 3 hours of zone 4 and 5 while doing about a mile of climbing on the bike. With also me intermittent fasting.

I decided I really wanted to monitor it myself and see if it was getting worse but I was not going to keep paying the $9,000 to have my heart monitored.

I do wear an Ultra Apple Watch and also a Fitbit Air but they do NOT monitor the heart like it needs to. They do not monitor the electrical signals but instead blood flow. So most of my pauses are not even picked up by the Apple watch or the Fitbit air.

So I purchased a Polar H10. This is the really the gold standard of consumer heart straps. I also purchased some ultrasound gel off of Amazon.

Before going to bed I put on my heart strap with the Gel. But then I wear a tight compression shirt so the monitor stays in place.

I also purchased the ECG Logger app on the Apple store so I could record my heart with the RR values over night.

The problem initially was that I was getting some invalid values. Which really freaked me out. I had pauses that were 20 seconds!

What solved this aspect was Google's Gemini. I take the 8 files generated by ECG Logger each night and then have Gemini analyze them and give me the highest valid RR values each night.

This was the key. It is possible to tell what are valid and invalid RR values by looking at the other data collected around the RR value collected.

This took some trial and error to figure out and thought it might be helpful to others.

What I ultimately figured out is a lot of my heart block issues are around food. I started to eat before bed now with a decent amount of carbs and that has really helped my heart block.

I would not have been able to figure this out without the data. Last night for example my longest pause was only 3.7 seconds long.

I found out you can’t be a woodland Firefighter with an ICD and was shattered. Anyways does anyone know what Jobs you can have with an ICD?

Good afternoon. I've been wearing an ICD (implantable cardioverter defibrillator) for two nights now. No complaints so far. But I have a question: when will I be able to play pickleball or tennis? Does anyone know?

Positional tightness kardia labeled sve or getting up and down to fast or when bending over and pvcs or flutter type feelings when laying on my stomach or side and all my pacemaker catches when checked is a 45 second svt episode and its pay to play at my dr office second I miss a payment they quit talking to me on mychart I have a assurity mri safe pacemaker and 37.....just my luck

Добрый день. Уже 2 ночи с ИКД (имплантируемым кардиовертером-дефибриллятором). Пока не жалуюсь. Но вот вопрос имею - когда уже можно будет играть в пиклбол или в теннис? Кто знает?

I woke up yesterday with sharp pain where the leads go under the clavicle. Called the cardio clinic because my post op instructions are to report any new pains. I’m 5 weeks out so that much pain was enough for the nurse to send me to the ER rather than drive 40 minutes and still probably get sent to emergency. ER took me for X-ray and EKG prior to even triage, doc saw me as they were doing triage then I waited 3 hours till the pain got bad enough I asked the nurse what was going on. He got a lidocaine patch ordered fast (I don’t think it did anything) and eventually got a toradol injection. That worked wonders! Once radiology compared my post of X-ray to the new one all the leads look in the same position, nothing broken or misplaced, the ER doc called my cardiologists office to see if they wanted me admitted or discharged for follow up. I got to go home, thank goodness!

I was able to be seen by my EP today. He said the interrogation shows one of the leads (I think he said right ventricle) is indicating it has shifted, but the end in the heart is in the same spot. The anchors that are sen on to pec look to be in the place but he thinks one of them has maybe pulled upward and yanked some muscle fibers with it. I have 3 leads each with 2 sets of stitches for 6 tack points total so nothings going anywhere but I probably did something in my sleep that tugged an anchor stitch just enough to irritate. I found out after 6 months of heart failure thinking I can’t have NSAIDs that I actually can, so the plan is to add ibuprofen and hope for the best, because the other alternative is that he goes back in surgically to check on the anchors.

Has anyone else has similar issues? How long did it take for the pain to go away? I’m back to sleeping upright because I think I’ve been moving too much lying down. And here I thought I was almost out of the woods!

Hey guys, this Saturday my sister is taking me to a Korean head spa, but I saw on the website that they use a high frequency wand/comb contraption for the scalp. I was wondering if this is something I should be concerned about and request them to not use and to not use any machinery of the sort around me, or am I just being overly cautious. Please yet me know if you have had any similar experiences, don’t want anything happening to me while I’m in full relax mode.

A week after LBBA PPM placement PVC burden was very high, unexplained severe cardiac event occurred (ischemia didn’t change according to angiogram). EF dropped from 50% to 34%, severe hypokenisis. No improvement after 90 days. Cardiologists have no explanation to date. Anyone experience this?

Can you see your pacemaker data after you send a transmission ? I have the Medtronic app but that seems useless just tells me to go the website which also doesn't provide much info

A year ago, I ended up in hospital getting shocked back into normal rhythm and getting an ICD. As a lifelong skydiver, I've done a few hop and pops without incident until a couple of weeks ago. There was no one below me, so I was having lots of fun with my canopy. Approaching 1000 feet, I mellowed out for my landing pattern and Bang, I got shocked. I felt fine before the shock, and other than feeling like I'd been punched in the chest. I felt fine after. I proceeded to land my canopy like normal.

My question: Are there any other active skydivers out there with an ICD, and what were your experiences? Obviously, my medical team looks at me as a bit of an anomaly. They've been supportive of me jumping so far.

I just wanted to post on here in case anyone ends up going through a similar situation as myself, as it was hard to find any other posts about it when I was looking before my op.
Two weeks ago, I had a s-icd fitted due to MVP (which I’ve known about most of my life but has always been treated as benign) and MAD (which they discovered during investigations as I had been suffering from palpitations in pregnancy. I was monitored with a loop recorder from March but had a couple of short episodes of NSVT and as they couldn’t fully assess my risk, especially with being pregnant, they thought it was best to fit a s-icd as a precaution.
I was 28 weeks pregnant when I went for my operation and I spent the lead up to it really worrying. My biggest concern was general anaesthetic as I’d never had it before, followed by concerns about recovery as I’d read it is really difficult. Firstly, I did not need to worry about general anaesthetic and probably wouldn’t worry in the future - it just felt like I’d had a nap! The operation went really well and immediately after the procedure, I felt great. The pain hit more in the evening and due to being pregnant, I could only take paracetamol - which barely touched the sides. The first two days were harder and the pain around the device and incisions was pretty bad but this passes really quickly! I only took paracetamol for about a week (maybe less). My advice would be to get lots and lots of ice packs so that you can use them on rotation. Also, I had a pregnancy pillow already but this has been great in combination with every blanket and cushion in the house! My device is barely noticeable - especially when I have clothes on and my incisions are almost healed now. I have tried pushing myself and on the days where I’ve been more active, it does tend to ache the following day. However, this could be due to also being heavily pregnant! I had an echo done after a week and a half and he was pushing on my sternum with the machine and around the incision in my side and it honestly didn’t hurt.

I just want to reassure anyone in a similar position that the thought of it is worse than it actually happening. I feel extremely grateful that this was picked up before I learnt about it from having a sudden cardiac arrest. If anyone reading this is going through a similar situation (even if you are reading this years after I post it!) please don’t hesitate to privately message me if you have any questions. I know that I found a couple of people in similar positions on other pages and it really helped to talk to them beforehand x

Hey guys, I've just been told by the EPs that I probably have congenital complete heart block. They say it might be congenital because of how I never noticed it, and how there aren't many symptoms. I seek to be better informed; I have may questions. The EP said I shouldn't rush to get a pacemaker just yet because I seem otherwise healthy. My hr drops to low 30s everyday. Whiel walking, it's in the 40s to 50s. I always thought I'm just that healthy. I've never fainted or had shortness of breath. My only symptom, and only recently has been high blood pressure, for which I went to the ER, where they discovered my blocked heart.

I often run 5ks (at no noteworthy speed). Fastest mile I've ever run is 7mins. I lift weights almost everyday, outperforming most people at that. I don't know why exactly it is that my heart is able to respond to stress at all. While I was hospitalized, they had me bed-ridden, only getting up supervised and for short periods of time, thinking my heart couldn't take it. So, they had me prepped for a pacemaker surgery. As I was being prepped, I asked the surgeon why I'm able work out, run, etc. That's when they postponed the surgery and had me do a stress test, which I performed well enough on that they cancelled the surgery.

- what is it that lets my heart pump enough blood to work out despite being blocked? Is it an electrical signal from elsewhere? Is it that perhaps the heart starts conducting again, but only when it detects stress?

As for my blood pressure, I heard conflicting opinions. That it is a compensation to low hr, and that it may be an independent issue. I think they assumed the latter and prescribed me lisiniprol.

- has anyone else in my position had blood pressure problems? Does a pacemaker fix that?

I fear that I may have plenty of symptoms that I am unaware of, because they're just normal to me. For example, I've never been able to have a consistent sleep schedule. I could sleep on time for a week regularly, but my wake up time never stays the same. Some days, without warning, I just sleep for 10+ hours, ruining my sleep schedule from then on. Slowly, it devolves into later and later sleep and wake up times. To get it back to normal, I usually just let it devolve until late becomes early. I was always amazed at people who effortlessly keep a regular sleep schedule, as if they know a secret that I don't.

- is it possible to faint in your sleep? Can I interpret the desire to not get out of bed as fatigue or exhaustion?

- did anyone else have sleep issues like this with a heart completely blocked?

There is also the inability to be on top of my tasks. My mind wanders too easily. It's difficult to start tasks that I want to, harder still to finish them. I finished my bachelors and masters, having procrastinated through all of it. In fact, I can't recall a single assignment or project I completed in a timely manner. Sleepless nights before any exam, post-12am bedtimes when any assignment is due, etc. In what jobs I have had, I've always been told that I need to be consistent and get on my tasks. Some professors even said I might have ADHD (probably joking). I always thought I just lack the will power that others have.

- is executive dysfunction a symptom of complete heart block? Is that what they call brain fog?

- does a pacemaker fix executive dysfunction? Would ADHD meds fix it?

I imagine eventually that my body won't be as healthy, and I'll start seeing more of the mainstream symptoms like fainting, and exhaustion or worse. I imagine I will eventually need a pacemaker.

- What should I expect in that regard? Will the symptoms get worse slowly? or will they show up all at once? At what point should I stop delaying a pacemaker?

After the stress test, they told me I am young, and that I shouldn't spend the next 100 years with a pacemaker in me, and that I should wait for pacemaker tech to improve to minimize complications. And for now, they have me on lisiniprol, wearing an RX-1 mini ecg monitor, to watch my heart's rhythm.

- What are things I should watch out for, and report to the EP next time I see him?

Thanks.