Looking for pacemaker info

[cp172]

I am the proud owner of a new Biotronik pacemaker which was not planned for so I have a lot to learn. The Dual Chamber model communicates each night with a device the size of a small cell phone (Cardio Messenger) It downloads the day's heart activities which are then uploaded to my cardiologist. This means going forward my cardiologist will have tons of data prior to my visits. I am reading the manuals that came with the equipment. Any real world comments/advice for a pacemaker Newbe? Thanks for any comments

 

[Protimenow]

I have a St. Jude pacemaker. It uses a 'Merlin at home' monitoring device. It sends me an alarm some mornings, and supposedly sends a message to my cardiologist, but I've never gotten feedback from him.

My device is able to send the reports to my doctor when I ask it to.

Your device probably works in a similar way.

 

[oo0My_Valve0oo]

Acquired a Biotronik Edora 8 DR-T dual chamber pacemaker 5/16/23.

The immediate feedback is limited on that pacemaker monitor at home. Mine does not have any audio capability. I check it periodically especially if I feel what could be a palpitation or my portable EKG monitor indicates some possible abnormaility. But it has said "OK" and when I met with the pacemaker clinician nothing had produced a blip on their end.

As I have felt better I have had to be extra careful to avoid unconsciously moving my arm too high. Pain can be beneficial in reminding you of limits. The sling was too restrictive and uncomfortable to sleep with. I have been using a strap with loops designed for stretching. I put that around my waste. Then I slip my left wrist through a loop on the end with the excess length and secure it with the Velcro strap from the sling. This limits me from moving my arm too high and is free enough to be able to shift my position when sleeping.

Sleep: At my worst fatigued state pre-pacemaker I was still only sleeping 0-4 hours a day. No amount of sleep relieved it and I have had a sort of insomnia for years since working a graveyard shift for 10 years. That was 24 years ago. I can push myself. I cannot let go and relax when I need to. I just tense up. It is counterproductive. Since the pacemaker I feel more revitalized on 2 hours sleep than 8-9 pre-OHS symptoms 2 years ago. I had a routine physical earlier this year and sleep was something to address. I signed up for a sleep coach. But I did not meet with them until after things related to the pacemaker transpired. A new problem is being so relatively energized. I set up a goal and a plan. The first few days I was well past bedtime when I looked at a clock. Every night I have had too much energy to go to bed. Some of it is poor "sleep hygiene." I am on leave from work recovering. I have a physical job and have to wait the full 6-week period while some people can return within 2 weeks. I look for things to do, get involved and don't feel tired so I continue. At least I always wake up between 7:45 AM - 8:00 AM even when I go to bed at 5:30 AM and they say get up at the same time no matter what. The first check-in since this plan was implemented is tomorrow night. I have yet to hit the mark.

 

[cp172]

I have a St. Jude pacemaker. It uses a 'Merlin at home' monitoring device. It sends me an alarm some mornings, and supposedly sends a message to my cardiologist, but I've never gotten feedback from him.

My device is able to send the reports to my doctor when I ask it to.

Your device probably works in a similar way.

Thanks for info. I guess I will know more when I visit my dr in a couple of weeks.

 

[cp172]

Acquired a Biotronik Edora 8 DR-T dual chamber pacemaker 5/16/23.

The immediate feedback is limited on that pacemaker monitor at home. Mine does not have any audio capability. I check it periodically especially if I feel what could be a palpitation or my portable EKG monitor indicates some possible abnormaility. But it has said "OK" and when I met with the pacemaker clinician nothing had produced a blip on their end.

As I have felt better I have had to be extra careful to avoid unconsciously moving my arm too high. Pain can be beneficial in reminding you of limits. The sling was too restrictive and uncomfortable to sleep with. I have been using a strap with loops designed for stretching. I put that around my waste. Then I slip my left wrist through a loop on the end with the excess length and secure it with the Velcro strap from the sling. This limits me from moving my arm too high and is free enough to be able to shift my position when sleeping.

Sleep: At my worst fatigued state pre-pacemaker I was still only sleeping 0-4 hours a day. No amount of sleep relieved it and I have had a sort of insomnia for years since working a graveyard shift for 10 years. That was 24 years ago. I can push myself. I cannot let go and relax when I need to. I just tense up. It is counterproductive. Since the pacemaker I feel more revitalized on 2 hours sleep than 8-9 pre-OHS symptoms 2 years ago. I had a routine physical earlier this year and sleep was something to address. I signed up for a sleep coach. But I did not meet with them until after things related to the pacemaker transpired. A new problem is being so relatively energized. I set up a goal and a plan. The first few days I was well past bedtime when I looked at a clock. Every night I have had too much energy to go to bed. Some of it is poor "sleep hygiene." I am on leave from work recovering. I have a physical job and have to wait the full 6-week period while some people can return within 2 weeks. I look for things to do, get involved and don't feel tired so I continue. At least I always wake up between 7:45 AM - 8:00 AM even when I go to bed at 5:30 AM and they say get up at the same time no matter what. The first check-in since this plan was implemented is tomorrow night. I have yet to hit the mark.

I was warned not to raise my arm above my shoulder or I risked pulling the leads from the heart and having to redo the surgery. I have put my arm in a sling as you suggested. Unfortunately when in the bed it is hard to remember the instructions. I plan to try your strap method. I am curious if the pacemaker will help with my sleep. I hope you continue to improve and thanks for the advice.

 

[oo0My_Valve0oo]

I am curious if the pacemaker will help with my sleep.

I read of the potential benefit to sleep a day before going to hospital. I hope it helps sleep. I am not able to measure that yet because I still do not have the freedom to move and rest in preferred positions.

I have a back injury and being forced to sleep on my back while this pacemaker is healing is a factor. At the least the improved efficiency of the heart and facilitation of blood flow and oxygen to the body sounds like it could. It would seem to help as much as staying active if not exercising as opposed to sitting and lying around immobile all day.

 

[LondonAndy]

I have had a pacemaker for 9 years now - in fact now on my second one. The advice to use a sling in the first few weeks after surgery was dropped some years ago, as the restriction in movement can result in frozen shoulder. You may want to check out Pacemakerclub.com - there are lots of other pacemaker users and they are really helpful. I learnt a lot from them. I think it is fair to say the consensus view there is that the risk of pulling the leads out of the heart is quite low. There is slack in the wires and you would have to REALLY stretch to do any harm.

Some other points:

1. Going through airports you don't need to declare the device - just walk through the security arch like other people. (I always carry my pacemaker ID card when I travel, but have never been asked for it).
2. Nothing in the domestic environment is likely to interfere with it, though it you have an induction hob don't lie on it! Keep a 6" distance from anything you are worried about.
3. In terms of sleep, a pacemaker will help because your heartbeat won't drop too low, but actually you may find your pulse is now stronger, so you don't sleep quite as well until you get used to your new bionic body!
4. If you drive you probably will need to declare it to the licence people.

 

[Protimenow]

Thanks.

This is good information.

I renewed my driver's license last week. They asked if I had any problems in the last three years that would effect my driving. I didn't interpret this to mean a pacemaker because it caused me no problems and I've been fine with it.

I'm getting my current pacemaker replaced with a biventricular model with defibrillator this thursday. If my surgeon thinks this would impact my ability to drive, or public safety, he'll probably tell me and be required to inform the DMV. Unless this is done, I won't worry about it.

 

[Protimenow]

I spoke to one of the surgery coordinators at my doctor's office, I won't have to bridge.

I won't need an arm sling.

I'll probably just keep the dressing dry for a few days.

(I'll probably need ice or a few days (I hope it doesn't take too long for pain to resolve) and probably not do any weightlifting for a few weeks, but there may not be a lot of restrictions. I'll know more in a few days).

 

[cp172]

I have had a pacemaker for 9 years now - in fact now on my second one. The advice to use a sling in the first few weeks after surgery was dropped some years ago, as the restriction in movement can result in frozen shoulder. You may want to check out Pacemakerclub.com - there are lots of other pacemaker users and they are really helpful. I learnt a lot from them. I think it is fair to say the consensus view there is that the risk of pulling the leads out of the heart is quite low. There is slack in the wires and you would have to REALLY stretch to do any harm.

Some other points:

1. Going through airports you don't need to declare the device - just walk through the security arch like other people. (I always carry my pacemaker ID card when I travel, but have never been asked for it).
2. Nothing in the domestic environment is likely to interfere with it, though it you have an induction hob don't lie on it! Keep a 6" distance from anything you are worried about.
3. In terms of sleep, a pacemaker will help because your heartbeat won't drop too low, but actually you may find your pulse is now stronger, so you don't sleep quite as well until you get used to your new bionic body!
4. If you drive you probably will need to declare it to the licence people.

Good info. I will check out pacemakerclub. Thanks

 

[cp172]

I spoke to one of the surgery coordinators at my doctor's office, I won't have to bridge.

I won't need an arm sling.

I'll probably just keep the dressing dry for a few days.

(I'll probably need ice or a few days (I hope it doesn't take too long for pain to resolve) and probably not do any weightlifting for a few weeks, but there may not be a lot of restrictions. I'll know more in a few days).

I am on Eliquis and did not stop taking before or after surgery which I thought was strange. I was told not to lift over 5 pounds and to take it easy for at least two weeks until I have my follow up visit. Dr also preferred I take sponge baths for two weeks and leave bandage on as well. My wife has far more restrictions on me than the dr. The pain has not been bad its just a constant soreness which seems better today (day 3 post surgery). Best of luck on your procedure.

 

[oo0My_Valve0oo]

I went against the restrictions and took a shower when I got home from the hospital. I used folded hand towels to block water and kept swapping them out for dry ones. They had an excellent waterproof bandage which remained sealed as I continued to shower daily until I had the first follow-up appointment with the pacemaker clinician and she removed it. At that point she left the layer covering the incision and said it could get wet and to just dab it dry after.

As part of my job I am required to meet the standards set by the US Dept. of Transportation. The only absolute comes into play if you cross state lines. I contacted the state's Department of Motor Vehicles about driving were I live (California in the USA). They said if a condition involving a pacemaker compromises a patient's driving ability the doctor is required to report it to DMV, this not to be confused with the recovery period when driving is not allowed. There is a form the doctor fills out which is kept on record. This information came from a rep double checking with their manager.

I described my work routines to multiple medical people before and during the process of acquiring the pacemaker. I received instructions and warnings about driving only as it pertained to protecting the leads into the heart. So I am clear there.

Have many people on that pacemaker forum developed frozen shoulder from pacemaker implant recovery? I read what a few of the medical sources online say about frozen shoulder. I suspect the hospitals are being extra cautious with pacemaker recipients. If it avoids just a few incidents, being overcautious helps prevent a time consuming process treating and recovering from frozen shoulder, especially involving the elderly. This benefits everyone. Hospitals have enough on their hands. Mobility and independence is key to sustaining health as you get older.

If your shoulder and arm were in a cast for 6 weeks I think you would come out of it with only some muscle stiffness and atrophy. I am using my left hand, arm and my shoulder moves in the process, just not into the newly implanted pacemaker forbidden range. I have arthritis from neck, spine down into ankles and toes. I wish everything was as smooth moving and free of pain as my left shoulder is now 4 weeks after the procedure.

 

[ATHENS1964]

https://my.clevelandclinic.org/health/treatments/17166-pacemakers-leadless-pacemaker

 

[Protimenow]

I suspect that some hospitals employ a CYA philosophy, being overly careful, and maybe not up to date with current practices.

I'll update this after my pacemaker implantation (once I can type comfortably) on what my surgeon advises,

I don't remember a sling (maybe overnight on the first night?) or special instructions, other than something about getting the dressing wet for a few days, and waiting for the adhesive to come off.

I'm getting an Abbott (St. Jude) pacemaker. An Abbott rep (probably assisting in determining lead placement) will be at the surgery.

There's now an app for the phone that can monitor the pacemaker over Bluetooth. I have it installed on my phone -- I'll see if they activate it for my device.

Thanks to everyone for your good wishes.

(I hope I didn't hijack this thread)

 

[cp172]

I suspect that some hospitals employ a CYA philosophy, being overly careful, and maybe not up to date with current practices.

I'll update this after my pacemaker implantation (once I can type comfortably) on what my surgeon advises,

I don't remember a sling (maybe overnight on the first night?) or special instructions, other than something about getting the dressing wet for a few days, and waiting for the adhesive to come off.

I'm getting an Abbott (St. Jude) pacemaker. An Abbott rep (probably assisting in determining lead placement) will be at the surgery.

There's now an app for the phone that can monitor the pacemaker over Bluetooth. I have it installed on my phone -- I'll see if they activate it for my device.

Thanks to everyone for your good wishes.

(I hope I didn't hijack this thread)

Good info and no you did not hijack the thread. Looking forward to your updates and hope your procedure/recovery go well.

I have found if I put the sling around my waist when I go to bed it prevents me from raising my arm at night (am very animated when I sleep). Thanks

 

[cp172]

I had my checkup for the pacemaker to be checked out. Everything looked fine. I was surprised to learn that the cardiologist has a team that reviews pacemaker data every day on his patients. The software they use prioritizes the data reviewed based on issues reported by the pacemakers. We live in wonderous time. Now if I can just keep my arm below my head for three more weeks. Hope everyone is well.

 

[Protimenow]

I had an Abbott CRT-D pacemaker implanted on June 15. I took Uber to and from the surgical center. The doctor implanted three new leads and left one unconnected. He told me that because of the unconnected lead. I can't have MRIs.

Fortunately, I didn't have much post-op discomfort (a few Tylenol were all that I needed).

The next day, I was feeling great. My kidneys jumped into overdrive because more blood was going through them. I was more active without even thinking about it.

The surgery was on Thursday. On Monday I called to ask the doctor if I could sleep on my side or drive my car. I was told I could do both.

Apparently the only restrictions were against lifting anything over ten pounds or lifting my arms above my shoulders.

A few weeks in, I had an episode of lightheadedness. The doctor was non-responsive.

I noticed that the amplitude of the electrical signal as recorded on my watch ECG was lower than the amplitude from my previous pacemaker, I wasn't feeling well and didn't want to die overnight, and went to the E.R. My signal to my heart was so low that some of the ECGs at the hospital weren't able to get an accucate measurement.

When my doctor's assistant finally saw me in my room, she acted like nothing was wrong, I'll be going to a pacemaker follow-up visit next week - about three weeks post-op.

 

[Lynn]

Glad your pacemaker implant was successful cp172. Like others have mentioned, I did not need a sling post implant and was told to make sure I used my arm and shoulder as normally as possible, simply avoiding lifting too much weight or raising my arm over my head until the wires were healed.

I was told I could take off the dressing and shower normally after 48 hours which I did. I did have a recall in my Abbott Assurity last year, and because I am 100% pacemaker dependent, I had it replaced last Nov. As the wires were fine and didn’t need to be replaced, I virtually no restrictions except for no shower for 48 hours. 4 weeks later I was able to do my full exercise routine including ab wheel, and went to Mexico 6 weeks later with my surgeons blessing.

I will say the recall was scary, but these are amazing little devices. Very great full for mine.

 

[Lynn]

Protimenow, your situation does sound a bit scary. It could simply be the way the pacer is programmed and hopefully the tech can quickly take care of this. The signal may not be set strong enough.

Having said that issues do happen. Abbott has had recent recalls, as I can attest too. If you haven’t been set up on home monitoring, which I suppose to check for issues such as this, you may want to talk to the pacemaker tech about this.

Best of luck.

 

[Protimenow]

Lynn: thanks. It was programmed during implantation, and I also think that the signal is too weak -- probably because the doctor didn't want a strong heartbeat that might dislodge the new leads.

I transmitted the data from the pacemaker on Friday. They interrogated the pacemaker at the hospital on Saturday. According to the doctor's assistant, everything looked fine.

Maybe I'll know more after I see my electrocardiologist on Thursday. He's the 'tech' who handles the programming.