Good things to know that you might not think to ask or discuss with your doctor about your pacemaker/ICD. Mostly tips and discussions I have had with those who live with them.
Cold
Many patients complain of cold sensation in the chest due to the metal. I know of patients who put packaged hand warmers over pacemaker to keep warm. Be careful though as if your pacemaker site has been opened several times, the scar tissue is no longer sensitive to potential for burn.
Exercise
Some people’s pacemakers do not pace enough to meet the hearts needs for exercise or strenuous exertion of daily life. Their heart rate does not increase enough for the effort made because the pacemaker doesn’t pick up the movement to tell it to increase the rate. The pacemaker does recognize the movement either due to sensitivity or design and a very stable upper body. I had a patient who could bike super hard and his heart rate wouldn’t go above 70. Needless to say it didn’t take long for him to get short of breath. This is called chronotropic incompetance. One method to overcome this problem is to have patients literally must stimulate their pacemaker by tapping on it or doing arm circles to get the pacemaker to recognize there is physical activity going on and to trigger the algorithm to increase the rate of pacemaker firing. These patients would have complaints of symptoms of shortness of breath and fatigue with activity if they didn’t stimulate the pacemaker to increase heart rate. When the pacemaker speeds up they have enough blood flow to meet the physical demands of the activity. For others the rate may not be set high enough to get through the activity they perform with daily life.
It is important for patients to know the settings of the pacemaker, what is the sleep rate, the resting rate, the thresholds for firing.
Programmable features include the rate of acceleration of the heart rate with exercise, the increase in heart rate at different levels of exercise, and the rapidity of deceleration of the heart rate as the patient stops exercising are all programmable. Thus, the peak pacing heart rate for patients who participate in vigorous sports can be adjusted and often the range is set as high as 140/min.
Here is where technology and science can clash. Cardiac patients are now being encouraged to increase their heart rates with interval training. The heart rate high parameters may not be realistic. It isn’t uncommon to be able to exercise strenuously yet comfortably including conversing, while being symptom free at heart rate ranges well above the traditional parameters. If the pacemaker limits physical activity this is often a cause of frustration and depression for cardiac patients.As they feel they are being held back or held down fearful of what could happen if they exceed heart rate ranges prescribed.
The rates of acceleration and deceleration of the heart rate with exercise can be adjusted also to the activity level of the patient. Track heart rates with symptoms so when you see the pacemaker nurse they can adjust the settings appropriately.
It is also very important if you have an ICD you understand what the rate to trigger the algorithm is set for. If the heart rate is high enough with activity the ICD begins it’s instructions of shocking or pacing the heart out of what it thinks is a serious heart problem.
Movement Repeatedly lifting heavy loads over head can be a problem. The lead wire runs between the clavicle (collar-bone) and the first rib. If it repeatedly pinched and bent thousands of times the lead can fracture.
Electrical Interference
What does and doesn’t interfere with the pacemaker? Modern ones are safer, better protected against microwaves and other stray electromagnetic radiation, and smarter. You may not have a magnetic resonance imaging (MRI) procedure. You should also avoid large magnetic fields such as power generation sites and industrial sites such as automobile junkyards that use large magnets. Arc-welding can create a high energy field that will reprogram pacemakers. In addition, cellular telephones, particularly the digital variety can cause problems. Cell phones in the U.S. with less than 3 watts of output do not seem to affect pacemakers or the pulse generator, but as a precaution, cell phones should be kept at least 6 inches away from your pacemaker. Avoid carrying a cell phone in your breast pocket over your pacemaker. Even your physicians will disagree with what motors and electronics can cause this. The best way is to contact the manufactures web site and get a list of what type electrical interference has been studied with that particular make and model.
Leads breaking/Battery Change/Technology innovation
Just like your car needs tune ups and maintenance. Certain parts are not currently made to be lifelong and will require replacement. The risks and benefits of pacing should be discussed with the patient and family, including the need for regular pacemaker surveillance for the remainder of the patients life and the need for pacemaker replacements for battery depletion in the future.
Tattoos
Can you get a tattoo over your Pacemaker/ICD site? Had a big issue with that one once. Patient fighting with Pacemaker nurse who said no, pacemaker company reps get involved no one can agree. Mean time patient gets tattoo. Turned out was OK. But to get a few experts together and agree in an area where could produce potential litigation ….anyway don’t get me started.
Body Image/Women
Common after effects reported included depression, loss of libido, sleeplessness, and uncertainty. A big lump on the chest, right where the bra strap hits, no more bikini’s, how ugly, etc. etc…all complaints of women with pacemakers. There are some hospitals who place the pacemaker down below the breast in women. There is discussion of making them with more rounded edges to contour to a woman’s chest. If you hate it, talk with your doctor and pacemaker reps…what are the alternatives at the next upgrade. Kind of like upgrading your phone, make sure it has the bells and whistles you want.
Clock
Each time a pacemaker is interrogated with a programmer (the computer they use to do the tests, etc.) the pacemaker syncs its internal clock with the programmer’s clock. So, if you are on vacation and checked in a different time zone from where you live, it will be off that many hours once you are back home. Also, pacemakers do not adjust for daylight savings time, so that frequently accounts for event times being an hour off.
Finally, it is always possible that the programmer time is off. They are normally checked fairly regularly, but these things happen. When the programmer’s clock is wrong, your pacemaker’s time stamps will be wrong until it is interrogated by a programmer with the correct time. Day light savings time again, another common scenario discussed or reported by patients when they attend their cardiac rehabilitation program:
If someone had an event at 8:00 pm the ICD would read 7 pm at an interrogation after the time change. That is something to remember for sure when asked what you were doing at a certain time the day of an event… And really, how would an ICD know about the time change, it’s not like it plugs into the internet on a regular basis… unless you have a care link.
I got my pm about a month ago and I had a problem w/ a shock at 1 a.m. every night. It was determined that it was the check mode going on and I was affected by it .There was no safety issue but it was very uncomfortable. I believe that is what the “problem” would be if any were to occur. The check mode would wake you up at an odd time. It is not something you need to correct until you get back unless you are noticing a great difference in the “feeling” of the pm.
Sleep modes
Modern pacemakers feature other specialized pacing modes which can benefit patients. Most pacemakers available today have a sleep mode feature. When programmed on, the sleep mode provides patients with a slower heart rate at night. At a pre-set time in the evening, the pacing rate falls 10 to 15 beats per minute to provide the heart with a slower rate at night to permit the heart to rest better. At a pre-set time in the morning, the pacemaker increases the pacing rate to the higher baseline rate used throughout the day. Again keep in mind Day light saving time. Other pacemakers are programmed to switch to the slower rate when the patient becomes motionless after falling asleep and revert back to the faster daytime rate in the morning when the patient becomes more active.What type of person are you, regular as clock work, in which case the preset times work best, or a young person with a variable schedule and in that case the motion sensor would be best.
http://www.icdsupportgroup.org/board/viewtopic.php?f=1&t=3943