This is all new to me

I was suffering from dizziness and breathing problems. My HR was dropping to 23 then missing beats for between 7-15 seconds. So I was given a pacemaker on 15th July. I am a runner and have been running for over 30 years. I started running again 3.5 weeks after the operation. It was a real struggle but I kept pushing myself because the technician said that she had given me an upper limit of 150 and we could tweak it on my visit after 5 weeks if necessary. At that appointment this week it was discovered that my pacemaker had been set at a base rate of 60 bpm with no upper limit. That is why I was struggling so much with the running - my HR did not go above 60 even when I was running! They have now adjusted it and I went running today but am terrified in case they have not set it correctly again and I am afraid of causing more damage to the heart if I push too hard.

I asked them if I could see a print out of the graph (although on this occasion there wasn't one because of the error) and they said it was for their purposes only.

I enquired about remote access on my phone and firstly they said there wasn't such a thing, then they said that this is only handed out to patients with special cases.

I asked questions about running and they didn't know the answers. I asked them how my heart was performing and whether it could have been damaged by the incorrect settings and they said that they only work on the electrics and know nothing about the heart.

I asked them about sleeping. My resting HR used to be 48 and they have set the PM to 60. At rest, the heart usually drops but with a PM it will never go below the 60. Would this have any effect on the heart? They said no.

I am very confused, concerned and worried. They either didn't want to answer my questions or they genuinely didn't know the answers. And, how can people in this profession make such careless mistakes as to not set a maximum HR, and not have any knowledge about the heart or even any knowledge about people who run and exercise? This worries me enormously.

The hospital I am under is St Georges in Tooting.

Are these technicians medically qualified or are they just IT programmers?

Can anyone please offer me advice.

6 Comments

Advice !

by Selwyn - 2013-08-24 08:08:08

Sorry to hear that you are having a bad time Butler.
I do know a little about the workings of the NHS.
Firstly, the technicians are not medically qualified, only your doctor and nurse has the benefit of a holistic medical education.In general other people working in the medical world gain knowledge ( and wisdom, hopefully) from experience.

Most pacemakers are rate responsive these days, meaning the heart rate will increase with physical activity (breathing and movement). If you tap your pacemaker case you should find your heart rate increasing- so the set upper limit will not make that much difference as the heart rate increases with activity, though at the top end of the scale it will ( you will have to have maximum exertion to achieve this).

To my knowledge, incorrect settings will not damage your heart, for practical purposes.

I know what you mean about the night base rate. You can get the pacemaker to set itself at a lower night base rate than the day rate. You need to talk to the technician about this. You can save on the battery life by doing this ( others in the club have commented about this).

Personally, I get print out of the PM settings when I attend my local department, and always have. Others at this club have said how valuable this can be. I would agree. Ask nicely, if that does not work, have a word with your consultant to organise this. The pacemaker club is here to help you understand about your device. Any queries with the read out can always be answered within the club.

The NHS does not operate remote access unless there are special needs. In general, the department will always see you outside of your appointment time if you phone them about a problem. In the event of difficulty your GP will be able to sort this out.

I am unaware of your date of birth. Sometimes staff have a stereotypic view of age. My view was changed when I once had a 83 year old ask be for Viagra. It cheered me up enormously! Who knows what physical exercise people get up to. You can only try to educated the uneducated.

I hope this helps. Please let us know if your queries are still unresolved and I, or others will do our best to answer them further.

Best of luck.


Rate response

by golden_snitch - 2013-08-25 03:08:18

Hi!

While most pacemaker today can be rate responsive, this function needs to be switched on. It's not a nominal setting that's being activated the minute you switch the pacemaker on, but your cardio has to switch it on manually.
I'm sure you'll know if the settings are still not correct when you go running. If it's feels alright and you experience no problems, then it will be set just fine. Should you, however, still experience the problems you had before your last appointment, your settings might need some more tweaking.

About the tapping: Not every device reacts to that. As far as I know it depends on the type of sensor and on where exactly it's placed inside the pacemaker unit. My accelerometer sensor doesn't react to tapping.

I am not sure that it is indeed an option to set no upper rate limit. If you just stick to the nominal settings, you'll have an upper rate limit of, in most pacers, 120-130bpm. It's true that in some patients this upper rate limit won't matter, but it will still be set. In patients who have sinus node issues, but a completely healthy AV-node, the upper rate limit doesn't change anything, their heart rate can go higher than that, but still, if you look at the print out there will be an upper limit defined.
However, if the rate response wasn't switched on, your pacemaker will not pace you up to that upper rate limit, it will only do so with the rate response switched on.

As Selwyn already said you can have your base rate at night programmed in a way that the pacemaker lowers it a bit. In some pacers you will have to define the times, for instance between 11 p.m. and 6 a.m. At nighttime 48bpm is perfectly fine, especially since you are a runner. I'd ask them to program the base rate for the night at something like 50bpm.

Don't know about the NHS. In Germany, the cardiologists themselves check and program pacemakers. The nurse is only allowed to prepare everything for the interrogation, and download some data; the actual checking of settings and re-programming is done by the cardio. We have no technicians and pacer reps usually only come in, if your cardio calls them and asks for help.

Best wishes
Inga

This is all new to me

by Butler - 2013-08-25 10:08:02

Dear Selwyn and golden snitch

Thank you both so much for your replies. You have alleviated my concerns and I now feel more relaxed about running. I ran a very slow 7 miles this morning, so afraid of pushing myself. Now that I have read your replies, you have given me the confidence to continue my training with a bit more enthusiasm. I now also have more knowledge about the workings of the tech staff and will be able to approach them in a different way to gain their support and get them to answer my questions (hopefully). I'm very grateful to you.
Butler

Looks like it's covered

by PacerRep - 2013-08-26 01:08:22

These guys covered it so I'll keep it short and sweet.

Your techs sound like jerk's and they screwed up....it happens.

1. They forgot ot turn on RR. Sounds like it's on now.
2. You are entitled to have a copy of your settings. I give them out all the time
3. Pacemakers can't be set with no upper rate...there's always a ceiling....that doesn't mean it can't be set to high. Typically people get either 120 or 130 as the max unless they are young or a special request.
4. Not all devices have a night rate/rest rate/sleep rate etc. Your's might. No wear and tear on the heart at 60 though. We usually only turn it on if people can't sleep at night becaus they feel palpitations.
5. I'd find somewhere else to have your device followed.

Looks like it's covered

by Butler - 2013-08-30 11:08:29

Dear PacerRep, so kind of you to add your comments. I am due to return to the clinic mid September. If they still do not want to help me I shall definitely request a change of hospital. But I know now that if I do have any problems or questions that I will receive all the help and support from this club.

New Member

by happypacer - 2013-08-31 10:08:34

Hi. I was just reading through the messages on this thread and felt I needed to join the site to have my two penny worth of say. I am on my secong pacemaker and have been pacing happily since 1994 now. I am also under the same hospital in Tooting, and have always been under them. Whatever I ask the tech guys in the clinic is always answered properly and to my satisfaction. I have a printout, I have lowered rates for sleep, I have allowances for gym activities. I also will be at the clinic in September, I am needing my 3 pacemaker soon and the guys at the clinic or keeping a close eye on me so my apoinments are close together now, should be having my new one within the next few months. Give it another go, the staff are very helpful, it is great for me going to St Georges I have seen some of the same staff for the past 20 years. Just don't understand how you had that bad experience. Good luck when you go for your appointment, never know you might bump into me. I will be the lass with the northern accent and big smile :) x

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I'm 35 and got my pacemaker a little over a year ago. It definitely is not a burden to me. In fact, I have more energy (which my husband enjoys), can do more things with my kids and have weight because of having the energy.