Confused

Confused

by Kandy - 2019-08-11 11:05:29

I have had my pacemaker only two weeks so I also have a list going for my next cardio visit. I was told my heart rate should never go below 60. My device is a Medtronic duel chamber. I have also received a home monitor that will transmit pace information to Medtronic who will then send on to cardiologist. Look up everything you can find about pacemakers and use that to get a list of questions going. Insist on getting all the information to make you comfortable!  Best wishes.  

what they tell us

by Tracey_E - 2019-08-11 12:31:38

Don't feel dumb! This is all new and there is a learning curve to it. Many, many leave the hospital with more questions than answers so your experience is common. Some doctor don't communicate well, some don't think we want to know, sometimes they think someone else already told us. You can ask for a copy of the pacing report. It's unusual for them to offer it but if I ask for it, they usually print it out and give it to me. Take a written list with you for your follow up appointment. I've found that when they know that I want to understand, they are very forthcoming with information. If I don't have it in writing, my brain shuts off and I forget my questions, so I always have a written list.

If the atria is beating normally but the ventricles (bottom) isn't keeping up, that sounds like av block. With av block our lower limit isn't as relevant because we don't need the pacer to keep us from going too slow, we mostly need it to make sure the ventricles beat when the atria does, complete the broken circuit. That said, 60 is a standard lower limit to send us home with, that means it won't let the atria go more than a second without a beat.  They adjust later as needed. It's very normal to need the settings adjusted a few times to get them fine tuned. No two of us are alike so settings are not one size fits all. 

It's unusal to do a single lead, so odds are high you have a two lead, or dual chamber, which means one in the atria and one in the ventricles. If your heart pauses, the atrial lead will kick in and send a signal to make the atria beat. If the atria is beating normally but the ventricles aren't keeping up, then the ventricular lead will kick in. Even if we don't use both, the second provides information so most of us automatically get two lead. 

First piece of advice, don't stare at the pulse ox all day long. If you feel bad, check your pulse. If you get an odd number on the machine, count manually because machines can be easily fooled (tho pulse ox is the most accurate). Otherwise, trust the pacer to do its job and don't worry about what your pulse is. It's going to go up and down, that's normal, and watching the nuances all day long will make us crazy. Resting rate should be under 100, it should go up on exertion, it shouldn't read more than a few beats under whatever they've set as your minimum.  

Jumping up quickly when you get up could mean rate response. That's a feature that senses when we are moving and raises our rate for us. You may not need it, in which case they can turn it off. If you do need it, it's possible to adjust the sensitivity so that it doesn't go up as quickly. I choose to have mine go up quickly. it's a little annoying when my rate jumps up when I walk across the room, but it rocks at the gym. 

It's also possible that if you were in block a lot before you got the pacer, your rate wasn't going up and down like it was supposed to. That happened to me. My atria beat normally but the signal never got through, so once I was paced all those normal ups and downs felt exaggerated because I'd never had them before. My atria was always going up and down, but the ventricles chugged along at a steady rate and that's what I was used to. What feels normal to the rest of the world felt like a roller coaster to me until I got used to it. 

Questions to ask...

- confirm that you have a two lead

- what is your upper and lower limit

- how much are you pacing with each lead

- are you pacing with rate response

If you have general questions about living with a pacer, ask away here! Many of us have been around this block a few times. I got my first one in 1994. Once you heal and they get the settings adjusted, most of us get on with our lives and mostly forget it's there. 

Confused

by Chapter - 2019-08-11 13:17:55

Hi Celticvixn,

I understand your confusion at this point, this has happened so fast for you,   It feels quite strange and unbelievable that you are you today.  You are not getting information from doctors because you have no idea what questions to ask yet.  They very well could have explained everything to you in the rush up to getting Pacemaker but it would have been hard to understand it all in the moment.  One thing you do know about is your MCT Disease.  Did you ask them if it had anything to do with your heart issue?  How do you know that your heart rate is going from 43 to 105?  43 seems like a strange number for your lower rate to be set at.

I was diagnosed with Lupus in 2011.  Treated with Plaquenil for 7 years and Prednisone as needed - aside from at least one good flare a year, I have been able to mostly stay healthy.  In the fall of 2017, I figured I was having a flare - no rash or sore joints but boy was I tired.  I was finding it harder to do everything, could not keep up on walks anymore, basement stairs were an issue.  One day, I jokingly told my husband “I think I am dying from heart failure”.  In the mean time I was also having a lot of trouble with Carpal Tunnel in my right hand and had finally settled on a date for surgery.  The day of surgery I was sent to emergency instead with very high BP and heart rate of 30.  Two days later I had a Pacemaker.  I had no idea what questions to ask - they talk fast and move on to next patient, and I am still thinking ‘what did he say his name was’.

I know a lot more now but still asking questions.  I do not feel my heart being paced - it just does it like it used to only faster.  I do feel very strong PVC’s that started a couple of days after surgery, and I still have now.  I do feel it when my heart rate goes up to 110-120 while I have not even stood up.  I started with Bradycardia and Pacer working at about 30%, within about 6 months I had complete heart block and pacing 100%, and EF down  to 35%.  In a week I go back to get new Pacemaker with a third line - CRT - hoping to feel much better after this.

Cardiologists say my body is healthy, blood work great, arteries all clean, lungs good, but I have Heart Failure.  I asked if it could be caused by Lupus or toxicty from meds, they say to verify for sure would be unnecessary invasive tests, because they would still only treat heart not the cause.  Lupus has been pretty quiet, I am off Lupus meds just in case, and hoping it is gone.  I am 65 so sometimes with age it settles down 🤞.

It is still very early for you, for me too really, you see so many people on this forum that have been doing it for a long time.  I hope you get some of your questions answered on here or with your doctor soon.  I have read a lot about my next device and I read before I go to appointments so that when doctor starts talking I am usually able to understand what he is saying and can ask my questions and understand answers.  Learn what you can about your condition and it will help you to relax.  

Hope you are feeling more confident today,

Chapter🌹