I had my first PM interrogation yesterday. They changed my lower rate from 60bpm up to 65bpm to help with the shortness of breath. Very annoyed at how little info they were willing to share !! I had to keep pumping them with questions most annoying that they didn't involve ME in their interrogation of my own body! They will NOT get away with it so lightly in future! I'm annoyed that I let this get to me so much,I'm still fuming 24 hours later!
Pacemaker interrogation : I had my... - British Heart Fou...
British Heart Foundation
I can understand your frustration. At my first check up I told them that I was getting very out of breath at the slightest exertion and was promptly told I’d had open heart surgery so what did I expect. When I had my second check up, this time at my local hospital, they weren’t surprised I was still getting out of breath because my setting was so low. My pacemaker fires all the time as I have complete heart block as a result of my AVR. They increased my settings and I could tell the difference straight away as I left the hospital.
I find it does depend on which technician you get. Of the ones I’ve seen at Lincoln, two explained things as they went through the results and answered any questions I had but I had to ask more questions with the last one, although she did answer all my queries.
Hopefully you’ll be better prepared next time and will get a more forthcoming technician.
I'm probably being too harsh ,but throughout my treatment from my GP & Paramedics who attended to me on countless occassions, Cardio/EP etc have ALL without exception treated me as a friend & individual, I suppose it was just a matter of time b4 I was brought back to the reality of life. I'm slowly coming down off the ceiling ;-).
Yes it can be frustrating !
I'm was a novice at dealing with the NHS 11 months ago after my heart attack/cardiac arrest, and while I understand that they have a job to do and that they are under, in some circumstances, extreme pressure, it would be nice not to be thought of as just a number going through the system.
I had an ICD implanted in August, and when I went for the 6 week checkup, I did ask them to explain what they were doing and the what the figures meant, and I actually got some very good answers from the tech people doing the check.
As you say they are interrogating YOUR body so you are entitled to be be told what they are doing!
11 months down the track I've learnt that you need to ask questions and keep asking questions until you get an answer. I think most NHS staff get this, but I guess there are still some who don't
Good luck next time! 😊
I understand your frustration. I think that also at times staff being only human see things in a simplistic way. What I mean by this is that sometimes it is ticking boxes. If BP is reasonable, pulse is reasonable, sats are reasonable etc then that makes you Ok. The reality was that in my case that all those things were reasonable but I still felt unwell. Professionals need to listen rather than just take the results of physical observations as an indicator that one must be ok. It seemed to me that they were reluctant to look at pacemaker settings and would only do so reluctantly. I don't mean to be critical in any way but what is the point of maintaining that all the observations are ok if the consequence of this leads to the individual having a poorer quality of life. You are the only one who knows if you feel alright or not.
I'm just having the same discussion with my hospital about teh lack of explanations when i had a heart attack. I was told "YOu had a heart attack, we are fitting stents " and that was it; not a word about damage or why it had happened or what was planned, type of stents etc etc.
I have read your previous posts. How are you?
I too have been recommended a pacemaker. I have had 2 ablations which worked quite well, and felt much better this year, taking Flecainide and Bisoprolol and Apixaban. Very few episodes of AF. Only occasional lack of energy walking up slopes. I walk 5 miles a day with the dog. Generally I feel pretty well. No faints or blackouts.
But now my heartrate is apparently too low. 36 at night and at my last ECG.
The decision to fit the pacemaker was made very quickly on Xmas Eve and I don't feel properly across it. So I am now gathering info.
I wonder how it is going for you with your PM? Are you happy with it?
I was first recommended a pacemaker (urgently) due to a slow rate and pauses due to arrhythmia. I went for ablations first and although the AF and flutter and pauses went I was left with a slow heart rate. In time I had arrhythmia return (this time an atypical flutter with 2:1 conduction) because a slow rate let’s the errant beats in and allows the arrhythmia. So I had the pacemaker 18 months ago, I’m still on meds and I had an unstable period this summer (resolved when EP tweaked settings) but personally I’m the best with my quality of life for 5 long years. A peaceful reliable heart beat. What more could you ask for Christmas? Seriously it’s always your choice but if they want to do it urgently they’ll have their reasons (slow heart rate can be a number of reasons mine was a junctional rhythm with no heart block so slow but reliable, mum has some heart block and had hers fitted this year). I hope my experience gives you confidence in your path, it’s never easy having these things sprung on you.
Thank you so much. That is SO helpful. I am coming to terms with it. I do have some heart block and some pauses, so it probably makes sense.
Was it painful? Did the PM feel as if it was fighting your own heart rate?
Thank you again.
It was not painful being put in at all (local at site) for me, aunty or mum (they both had one after me! Felt like the family guinea pig). If took 45 mins in the lab (dual lead) It was a bit painful a couple of days after but only needed paracetamol for a few days. It remained sore and uncomfortable for longer but honestly not an issue. If you have a dressing it’s normally taken off after a week- 10 days. For 6 weeks until your first pacing check you’ll have to be careful not lifting arm above shoulder height, lifting any weight, or putting arm behind your back so you don’t move/detach the leads as they bed in.
To cushion myself from the emotional and physical upset of having a pacemaker at an earlier age I stayed with my sister for a fortnight. I was looked after in all senses and was able to manage living alone for the remaining 4 weeks. I was able to look after my mum for a fortnight this year when she had hers done. Not much is made of procedures by the medics but it is a big and life long change being paced. Loving support, the actual caring of your mind as well as body can go a long way to making these things a lot less emotive. Let the people who love you look after you.
And lots of pillows including the V pillow for resting/sleeping in the early days.
The jury is out on whether wearing a bra or not is a good thing (some find it catches on the scar - others that being well endowed can pull on the site without a bra).
I travelled like the queen behind the driver for the first fortnight to save putting a seat belt over the scar.
Me and my EP are in no hurry to ablate my AV node. I am 99% atrial paced and only 1% ventricular paced (mum 52/72). If it’s for a slow rate not to control your arrhythmia then hopefully it can be set up to minimise ventricular pacing.
I do not feel the pacemaker in my chest nor it’s operation and I am paced all the time. I cannot feel my heart beating and I’m used to a lot of palpitations. It is very peaceful now. I did have quite a lot of sensation when it was put in (I was in a flutter at the time) especially at the site, I didn’t realise how swollen it was where they made the ‘pocket’ until it went down. I am fat and mum is slim, both our pacemakers are not visible or raised.
As someone who was very reluctant to have a pacemaker I can tell you it has worked out for me. There are no guarantees but I’m sure it wouldn’t be recommended unless needed. Mum was concerned as she could remember her own mother being paced and didn’t realise how sophisticated and small the current technology is.
I hope all goes smoothly for you.
Just re read this and thank you for the extra detail. It is so helpful to be prepared and gain from other people's experiences. I posted on the AFA Association Forum and got 30 responses! Everyone has been so kind.
To be honest I was in a bit of a state about it, and burst into tears when they told me because up till then it had always been a question of "if you feel ok then there are no problems and the heart block is only first degree." So it came as a shock.
I feel a lot better about the PM after responses like yours and Stumpy's. So thank you again. Best wishes for a happy peaceful new year.
Hi Janet, I'm now 3 months in & certainly have more energy, taking the dog for quite long walks now, which is certainly a big improvement from before my implant, Cardio & EP say it can take up to a year for everything (scar tissue) to heal up properly, I can sleep on my side now for a while which was difficult at first my pacemaker crunches up into my shoulder (known as the "Pinch" to all those who experience it), you notice the improvements as the weeks go by. My next check up is on 29th Jan where I shall ask about the odd occasional ectopics etc I still get.
I've had NO side effects from shop anti theft scanners or small weak magnets & phones either, though I did have to dodge a rather large generator at a local street market rather than risk walking near it !!
Overall Xmas was a real appreciation of how things could have been so different, so feeling pretty blessed to enjoy the Great Grand Children & family. Best wishes to you.
That is such good news! Interesting to hear. Thank you so much for your reply. I am so glad you had a good Christmas with your PM. I hope we can keep in touch.