Most Recent Messages in General Posting

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Chemotherapy induced heart failure

I'm curious if anyone has heart failure due to chemotherapy or cardio toxicity. I had chemotherapy for childhood cancer when I was seven. Two years ago, when I was diagnosed with hf, I found out that most likely my condition was caused by the chemo, doxorubicin/ adriamycin. My heart muscle is basically hardened. I received my crt-d in November. My EF is 20-25%. Would love to connect with someone who has a similar history. 

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AFIB with Qualifyiers?

Wondering if anyone has heard the term or phrase "AFIB with Qualifyers"  This would be in the context of a type of AFIB.

I would appriate any info you may have or if anyone could point me to a web site to do more research.

Thank you!

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Bad Timing

Hello everyone,

I always seem to have the worst timing when posting an update on my story. I generally like to wait weeks/months of no issues to report back in hopes of not jinxing myself and as a sense of accomplishment to say "hey everyone, I was feeling crappy but now I'm great", but of course, that's not my luck. 
 

The good -- I really do feel a little better with each passing week. I underwent another head MRI and neck MRA to look at blood ve...

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strange wave through upper torso

Hello all,

My husband recieved his Medtronic 3 lead pacemaker last April after he had a full electrical failure. He also has a 31 year old mechanical aortic valve that is working without complications. He takes coumadin to prevent clots with his mechanical valve. 

 

He has had 3 instances of a sensation of a mild stimulating wave across his upper torso. They only last a few seconds. He had 2 today, and felt his brain was a little disconnected for a moment. The 1st...

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Atrium pacing (AP) vs ventricle pacing (VP)

I've had my PM about a year now. After several procedures over the years, the main problem that drove my PM install was sick sinus syndrome. I have a dual chamber PM. The reports from my PM have consistently shown AP of around 95% which is what I expected. The initial reports showed VP to be about 1%. However, in recent months the VP has increased to 18% in a very linear fashion during the last 6 months.

I am new here and have been reading many posts at...

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Phrenic nerve stimulation

Hello, I am new to the club! Has anyone had an experience with the phrenic nerve and or diaphragm being stimulated from the left ventricle lead? I had a crt-d put in November 3rd. I began noticing a constant pulsating feeling in my thoracic cavity when I began to become more mobile after surgery. Feeling winded when at rest, trying to eat, pretty much everything caused sob. I went to the clinic and they shut the pacing down for three weeks until I could get in to see the doctor. The...

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Vaccines and long term paced

This is NOT a post about whether or not to get vaccinated for covid!

I had heard that over many years, or with some people not so many years, that blood flow is  reduced on the side with the pacer. I never had any symptoms or reason to believe I had this problem, but when I got my first covid vaccine, the lymph nodes in my neck and armpit swelled for a few days. Didn't think anything of it, chiropractor was able to drain it. Second one, I swelled more and it last longer and we...

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New cellular adapter

Anyone else with a Merlin get a present from Abbott? They are upgrading the cellular technology, took me about 2 minutes to read the instructions and install it. 

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Possible side effects of pace maker

9 months after receiving a PM I wonder if my recent outbreaks of skin eruptions on both arms could be related to the PM.  I ruled out pregnancy due to my lack of a uterus.  I also ruled out poison oak and ivy  because i've been snow bound for a month, although the eruptions look a bit like the poison ivy and oak rashes but with none of the wetness or redness associated with such.  I haven't ruled out warthog syndrome though.  Any ideas ,even slightly flip like...

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Infants and children with pacemakers

Hi there! 
 

My daughter is 1 year old but at 3 days old she required a pacemaker. Are there any parents out there who have had a similar experience?

I'm looking to connect with parents out there who have and learn how you've coped or if you have tips on traveling with your child...anything really! 
 

The journey has been emotional and confusing for me as a parent. So any guidance and support is welcomed!

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New upgrade from ICD to CRT-D

I was upgraded from a Medtronic ICD to a St Jude CRT-D on Jan 21 due to battery drain. I have a 7-y/o RA lead from a PM, and a 5 y/o lead for the ICD.  My vein near my clavicle is slightly distended so my EP was giving me the worst case scenario of having to tunnel to the right side and put the 3rd lead into a vein on the right.  An ultrasound was performed in pre-op and I and everybody else was relieved when the US showed the vein open.  He knew he was also going to have...

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How many years

Hi, so I am 49yo and getting my first install of a biventricular pacemaker.  My general question is do people live long regular lives with this provided I follow the dr rules.   Is 75-80 realistic?  Obviously other things can happen, but has anyone on board here had one or multiple over the last 20 plus years?

thanks

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Prominent abdominal veins

Hi there

I trust you are all well. A weird question from my side. 
I have very visible and protruding abdominal veins seen from just above my belly on both sides that runs into one vein up towards middle of my chest (heart). I have had it for a few months now. Is becoming worse  

Sonography of the INFERIOR VENA CAVA and subclavian area was done to see if any visible blockages but nothing was found. What else could it be?? It doesn't look appealing.&nbs...

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AV Block

Hi, I just got my pacemaker put in November 12. 2021 just after I turned 60. I was in the best shape of my life, walking 10,000 steps a week and yoga twice a week. On one of my walks in September I got a dizzy spell and felt weak. It was my first episode and took it as I was probably dehydrated or just not feeling up to walking as I had a cold or something two weeks earlier. I missed a couple of days work which is unusual for me. I then walked the next week and at work going up stairs I felt...

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Upcoming procedure

So I am scheduled for my procedure in a month, if all goes well how long before, driving, freshwater fishing, golfing, thanks.   

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OMRON Blood Pressure Cuff Sensing Irregular Heart Beats?

Hello all,

Haven't posted in a while. Mostly because I'm still going through vestibular therapy (started on Tuesday) and I have an MRA of my neck scheduled for tomorrow. I just returned from a family vacation (after recovering decently from COVID) and I can say the vacation was exactly what I needed, both physically and mentally. It was very calming and yet I was also able to get lots of steps in (over 15,000 a day) without issue. I did experience random vision/motion issues whe...

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Heart Rate Variabilaty HRV and PM location

Post surgery 12/27 with PM insertion my HRV has declined dramatically to low double digits to 21. Is that typical? I believe the iwatch the latest version I have is fairly accurate, it helped save my life. The JH doctors didn't think it was kbown for being inacccurate. Has your's  declined and is that typical if you didn't track it before? The remotes are on back order, do they record this?

I would like to move the location just below the collarbone to su...

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What is your sleep rate???

Hi I would really like to know how others determine their optimal sleep rate if you have this function?

I have just recently got my first pm for symptomatic sinus bradycardia (I have dysautonomia following a brain injury in 2014).

My CLS has not yet been turned on to assess me with basic atrial pacing alone for now, and whilst I am really happy with a floor level of 60bpm by day, I feel 50bpm at night may be a bit high as I am paced constantly all night and not sleeping too well.<...

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Restrictions , alcohol, hobby limits,

I don't yet have a device, but it has been confirmed that it is the best option going forward.  Most likely within next few months.  Obviously I have a few concerns.  I fish/golf/bowl,  I can't imagine that I would have any issue to continue these hobbies.  I am 49 y/o/m,  I also like a few beers or a scotch and a cigar.  Is that completely eliminated from my life?  Obviously I will ask my Dr.   Yes, I know both are not the best choices, ju...

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Bulging pacemaker

Hi I have my battery replaced 17/12/21 it feels like it's not in properly I know sounds weird and it's really sticking out every now and then it can get a bit painful like it's pushing against my skin it's worse if my bring my arm behind my back has this happened anyone I have my first appointment on 28th can I just add the pain goes under my arm and into my breast on side of pm

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You know you're wired when...

You have a maintenance schedule just like your car.

Member Quotes

I have had my pacer since 2005. At first it ruled my life. It took some time to calm down and make the mental adjustment. I had trouble sleeping and I worried a lot about pulling wires. Now I just live my life as I wish.