Transmitting and Office Visits

After 5 years of Afib medication and heart Oblation my husband received a pacemaker May 2015 after wearing a monitor and low heart rate April 2015 (braddycardia)

It seems his pacemaker is very high tech lots of special setting to help with fast heart beats , afib and much more its like a pocket watch in his chest it also has 2 leads

I am posting today b/c we are both confused about on information we are given concerning results of transmissions ,
office visits and home transmissions

My husband is very active and he's in his late 50's
his doctor seems pleased about this ... and they say its good he gets his heart rate up but says not to over due

He sees his cardiologist every 6 months and we understood he can transmit from home every 3 months but find we are traveling to the office for a pacemaker reading by the pacemaker staff ... instead of from home ...here's where it gets confusing ....we are told everything is ok .... but .... for 17 seconds his heart rate was up to 112 .... or heart was up for 2 minutes .... or he had Afib 6 hours .... when we hear this we get concerned ... and ask if this is a problem ... they are vague .... we are sent home and told to transmit again in 3 months ....
After transmission from home they call back and just say yes it was ... no idea if good or what ... when we do hear back ... from several pacemaker staff one leaves a message to transmit from home in 3 months another calls with an appointment in 3 months .... we feel like the pace maker staff are overwhelmed and stay behind in appointments and "some" just do not give good answers when we go back we plan to discuss home transmissions with his cardiologist

My husband says he feels good he takes a 24 hr time released heart pill , Bp meds and aspirin as directed

6 Comments

Adjustments

by Artist - 2016-03-05 09:03:44

One of the most challenging things we face when our PMs are implanted is the need to find the optimum settings. It is common for the PM reps to be present during follow up appointments and after interrogating the PM do some tweaking. That interrogation is more thorough than the reports that are remotely transmitted from home. Always ask for your own copy of each session so you can track what is done. In addition to tweaking the PM your cardiologist may decide to adjust the types and strengths of medications if there is an indication that heart arrythmias are not being sufficiently controlled or there are difficult side effects like fatigue and headaches. In my amateur opinion, a heart rate of 112 for only 17 seconds is not a real concern. AFIB for 6 hours is something to question. It helps to make a list of your questions before you go to an office visit. Other than routine follow up appointments, I would not hesitate to ask for a unscheduled appointment if you have serious concerns.
If you find your your doctor and his staff unresponsive shop around for a new doctor.

What kind of pacemaker and home monitoring equipment does your husband have? In my case, I have a St. Jude PM and the home monitor for that is called a Merlin. My Merlin performs a very short check of my PM every night and if it detects a reportable problem, sends a report to my cardiologist. In addition to that, my cardiologist has ordered a full Merlin report every 90 days to coincide with my 90 day office visits so that he has that information to refer to. According to my instructions, I must be within 10 feet of the monitor when I sleep at night for it to be able to read my PM. As I understand it, my cardiologist lets the monitoring agency know how frequently he wants a full report. One night I woke up at about 2 a.m. and my phone in use light was on for an extended period of time and it was the monitor sending a full report. I wrote the date down and can now pretty much calculate the day the next full report will be sent.
Ther are alot of confusing details regarding PMs and this is a good place to find answers and support. I hope I have provided a little help.

Thank You

by Ann54 - 2016-03-06 01:03:50

He has adjusted well to his PM and other than the PM nurse we are adjusting well

We are very happy with his cardilogist and his nurse they are great the doctor who put in his PM is also at there
we like him too (excellant)

Its difficult to explain but we have great difficulty understanding the PM nurse she is very confusing
most of her PM patients are very elderly 80+ and inactive

Its like she has to talk to herself to remind herself hubby is alot younger and active she'll say its good for him to get his heart rate up .... and can see it returns to normal she has his PM set if he goes in to Afib it will attempt to get him in rhythm for 24 hours apparently this worked

We think maybe some of the ....buts .... she mentions is things to keep an eye on but not something to worry us crazy over ....

She will say everything is good and her notes reflect this
but if we ask something she will go back over scan read out and say it was good ..... but .... 6 weeks ago this happened or 7 weeks ago this happened

If it was serious 5-6-7 weeks ago and she is learning about it now shouldn't we be in the office right now ?

If I call and talk with anyone else all they see in the notes is everything is good and to continue scanning at home

We are told me can transmit anytime between visits or reg transmissions just let staff know so they can download the information

We have decided to transmit once a month till his next office appointment

He has Medtronic PM and Medtronic Carelink transmitting device

Nurse's Comments

by Artist - 2016-03-06 03:03:57

When the nurse points out monitoring events that happened weeks ago, that's a good time to pin her down and ask for more clarification. Ask was that event potentially life threatening? Would some kind of medical intervention been appropriate at the time. What is the significance of that information now regarding his treatment. Monitoring can detect some events that may become significant if they repeatedly occur, increase in severity and duration and cause serious side effects etc. The nurse may have been pointing out that the PM is needed and along with his medications is controlling most of his arrythmia. You say he feels good and in my opinion that is what should help to guide you in helping with his care. Try not to obcess over details, but ask more questions when statements are made that worry you.

Thank You

by Ann54 - 2016-03-06 07:03:31

For your suggestions they are sincerely appreciated
and I will have a note card to help us with those questions and will post her responses after next
check up in 3 months

We do agree with you on pinning nurse down and try too
we've asked if he should feel anything when these events happen she says some don't feel anything .....
he doesn't ..... I asked would it be ok to send a transmission from home once a month to make sure he's doing ok ? she says we can transmit from home whenever we feel the need if he's symptomatic but then says he's on 3 months schedule or if we ask should we worry about those events ...she will say having the heart oblation sometimes does funny things to the heart ..... all the while back and forth between her own personal life and the scan all the while touching the screen and making changes to us she seems somewhere else some people would say scatter brained and to be honest we are more concerned she is going cause more harm than good than the events she tells us about

If we understood correctly 1.9 % of his 3 month scan
showed an event (mentioned in previous post)

I keep a daily journal with his bp and heart rate
3 times per day and note how he feels, activities
appetite and anything unusual or different like dentist
appointment, blood work ect









Over Doing It

by Artist - 2016-03-06 08:03:23

It's good to be involved and supportive of your husband's health needs. But checking his vital signs three times a day is sort of like being hit over the head with the idea that Oh dear, maybe I am sick. Most of us strive to put the awareness of our pacemakers aside and just get on with life. As an oversimplification, we try to feel "normal". If he feels alright, I would not check his HR/BP three times a day. We are all different and some people feel their arrhythmias and pacemakers working and some don't. In my case I feel arrhythmias when they are strong, persistent and might be of concern to me and then I do check my HR/BP. The fact that your husband does not feel his arrhythmias is o.k. as long as he is not feeling some red flags like shortness of breath, dizziness, weakness, blurred vision, chest pain etc. Frequently checking his vital signs can be counterproductive. PM recipients often struggle with depression and have to work at accepting their new normal. Try to relax a bit. Just have an agreement with him that he will let you know if he doesn't feel well and trust his judgment and monitoring devices.

Thank You

by Ann54 - 2016-03-06 09:03:55

It was difficult for both of us for along long long time our lives revolved around medication and multiple trips to multiple doctors after he became sick in 2009

At doctors request and from the beginning I was told to keep these records ... which used to also include his daily weight for both of us its become routine like brushing our teeth and other times .... its one more thing to remind us how quickly his health changed from excellent to a week in hospital , cardio version, frequent blood work lots of medication, tests and 5 years of trips to cardiologist

Over time (years) things seemed to level off less doctors appointments some meds were decreased and others stopped he no longer had AFib

Then his Afib returned 2 years ago his doctor recommended oblation ( heart beating to fast) he did well then a year ago his heart beat became to slow
and put in the PM its 2 lead and about the
size of a mens pocket watch

It seems like every time we relax we are hit with something to worry about this is mostly why I posted
our concern over the information the PM nurse gives
us and her explanation to our questions (vague)

Believe me we both tire of keeping a note book of records and sincerely I don't feel I should have too






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