Recent recipient looking for advice

I am 6 weeks in with a  St judes Assurity DR MRI dual pacemaker.

UK based

In 2019 I had a serious electrolyte imbalance due to lack of potassium (probably caused by severve reaction to high blood pressure meds) 3 emergency trips to hospital and test results lost, and had tests repeated.

I was diagnosed with a mobitz 2 block. My first appointment in early 2020 was postponed due to Covid-19. My pacemaker was finally implanted in late Sept 2020. I have been looking for a support group for someone to help me through this and drew a blank at every contact, then I saw you online. So far I have had no check up, but expect someone will do a pacing check in the next couple of months. This has all been a shock and very unexpected for me, can I ask what should I try to find out at a pacing check so I can gain more knowledge about how I can move on with confidence. I would be grateful for any help and advice please.

 


5 Comments

Welcome

by doublehorn48 - 2020-11-17 13:37:36

Welcome to this forum.   Sounds like you must be getting along fine so far.  I would call and find out when the first check up will be scheduled.  I also have mobitz 2.  My range is 60-160.  I would ask what your settings are and why.  Are there any limitations as to your activities?  Ask about how the cardiologist believes you are doing now.  Get a notebook and write down questions to ask.  If you are told something you don't understand ask them to explain so you can understand.  I do this a whole lot.  If you are taking meds go over them with the cardiologist.  You will get to the point where you hardly ever think about having a pm.  There are people on this forum that have extremely active lives that do just about anything they want to do.  If you have a specific question the people here are extremely helpful.

Welcome aboard,

m. scott 

Good luck and welcome

by Gemita - 2020-11-17 15:20:28

Verbena,

I am also in the UK and I am disturbed and ashamed to hear of your experience so far with our health service and hope that when you feel able and stronger you can take your complaints to the appropriate authorities for an apology and full explanation of what went wrong.   I feel you have suffered unnecessarily because of extremely poor care.

Verbena is popping up everywhere in my garden and I hope you will be just as persistent with your doctors in getting some clear answers.  I would particularly want to know what has caused your Mobitz type 2 block if they haven't already carried out extensive tests and confirmed this.  I would also want to know whether the cause(s) are reversible/treatable even at this late stage.  (I note so far your blood pressure meds probably caused the electrolyte disturbances, but in the very least you are owed a full explanation of what has happened).

My concern now would be to make sure that you get a confirmed appointment date for your first pacemaker check, especially since you have not had a check since implant.  I had a brief check at 6 weeks and a fuller one at 3 months.

Your first main check up will be to see that your pacemaker is functioning well with the settings that have been set for you at implant and to make sure that no significant events like a high heart rate or rhythm disturbance has been seen. They will check the state of your leads and battery and how often (in percentages) you are being paced right atrium/right ventricle.  You could ask what your minimum/maximum heart rate is set at but more detailed information can be obtained over a longer period.  There is no need to cover too much at first interrogation. 

They will want to know how you have been and whether you have had any symptoms.  Keep a diary note of any symptoms (like breathlessness) you might have had, date and time.  This will help them to identify whether there is a pacing problem or whether your settings may need adjusting.

I always ask for a summary sheet of my main settings which will give essential information and then you can ask questions here.  In the meantime, relax, recover and take good care of yourself.   My husband has Mobitz Type 2 and he is doing really well with his pacemaker although not so well with COVID-19 isolation.  I too have a pacemaker and am able to do most activities

Welcome.

by Graham M - 2020-11-17 18:13:15

I can't add to the advice that Gemita has already given you, but I can say welcome to the club.

Just 15 months ago, I was diagnosed with Mobitz type 2 and, like you didn't really know anything about it.  I found this club to be the best place to learn what it's like to live with a pacemaker, and I also read everything I could find on the internet (though you have to be careful what you read, as not everything is correct).

My Mobitz type 2 has progressed and I am now being paced 74% of the time, but the treatment is still the same and I can live a normal life.

There are people on this site who have run marathons and take part in all sorts of other spports, so you needn't be worried about what you will be able to do in the future.

Your PM will give you a new lease of life.

Best wishes,

Graham.

P.S. I am in the UK too.

Relief for the help

by verbena3 - 2020-11-17 19:20:40

A light at the end of the tunnel, thank you so much doublehorn48, Gemita and Graham M.

You are the first people who have helped in my long struggle and I look forward to being on the site.

I have taken notes and positive comments to help me move forward but with Covid its hard to get any answers from GP or hospital and I understand times are not normal.

I looked at approximatly  how many people in the uk had pacemakers and was shocked to find no support for us.

I have so many questions about my condition and how to handle it as I was so unprepared for the journey I find myself on, at least now I can contact the forum and ask people who understand. Thank you again.

 

 

Check things like "rate response" are turned on

by LondonAndy - 2020-11-18 17:41:54

Great advice already.  I seem to recall that when my pacemaker was inserted 6 years ago (for complete heart block after open heart surgery to replace my aortic valve - I am 100% paced) that initially rate response is not turned on.  This is where the pacemaker senses activity such as running and increases the rate at which you are paced so that the heart delivers more oxygen when needed.  Not sure if it not being turned on is still likely to be the case all this time later.  So let them know the sort of activities you like to do, if that hasn't been discussed already, and they can adjust the sensitivity of the rate response.

Pacemakers record a lot of information for about 15 months, so as Gemita says: if there is a time when something didn't feel right make a note of it so that you can say "I had palpitations at 1am on Friday 13 November", or whatever, and they can look in detail at that time.

I have found technicians welcome somebody who takes an interest in their device, and understand the anxiety of this new thing you have.  

To be honest I didn't really think about my pacemaker at the beginning - I didn't have symptoms suggesting I needed pacing before the valve surgery, and that larger operation was very much the "main event"!  I felt no different with the pacemaker than I had done before.  There are some amazingly knowledgeable people on this site who give very generously of their time and experience.  I have learnt a lot, and am sure you will too.  It's amazing how many people have one!

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