Biotronik settings and maybe a Consultation ...

My thought

by Lavender - 2024-07-08 21:06:11

My thought is that pacemaker techs cannot change settings without approval of the cardiologist or EP. They do not independently see patients. 

Consultation

by piglet22 - 2024-07-09 04:33:51

Being in UK, you will know the difficulty of getting non-urgent appointments.

Quite often the decision to implant a device is done on an urgent basis.

Once done, apart from routine or remote checkups, it can take a while to get tweaks done. I've bemoaned the after sales service before. I experienced this at the beginning of last year. Other patients do much better but a lot depends on your health trust.

I would be a little wary of too much direct contact with the supplier as this can undermine your relationship with the clinicians.

Many of the consultants who work for the NHS also work privately

 The last one I saw also worked for one of the large health providers.

If your pockets are deep enough and the need is pressing, almost certainly you could get something done.

Bear in mind, Biotronik provide the tools, the clinician ultimately decides how to use them.

Time for a little firm assertion on your part

by crustyg - 2024-07-09 05:26:29

I know that some cardiac centres still think we're living in the 1950s ('you'll get what I give you and be grateful for it'), but the world has moved on.

Firstly, when you politely and firmly ask for your device data (while holding out a USB memory stick), and they decline you remind them that you *will* get the data under the Access to Health Records Act 1990, and will just have generated bad feeling by declining, and showing their lack of knowledge of the law and that modern medicine is practised *with* the patient and not *on* the patient.

It's very clear that there is huge variation in quality and attitudes between cardiac centres across the UK.  I suggest you do whatever you can to be referred to a good centre (I don't think my local centre does Biotronik), so this may require some advice from Biotronik (if the centre doesn't have the manufacturer's programmers then they can't touch the devices - all of the vendors use proprietary tech to access and program their devices).

Piglet's warning about contacting the vendor is wise: the vendors are usually very wary about appearing to interpose themselves between the registered medical practitioners (their primary customers) and the patients (you and me).  But they might be the best source of information about centres who can work with Biotronik.

Leaving aside the variations around the country, post-implant support is all about building and maintaining a relationship between you and the EP-team (most of the time it's the EP-techs you interact with - but never put the techs in the position of having to decline a change that hasn't been approved by your EP-doc).  Read up about your device, ask questions (why would CLS == Intelligent Rate Response to increase HR be needed for someone with *only* CHB?), exert maximum charm and you'll find that your team become more open to sharing additional detail about settings and the rationale for your device setup.  GotRhythm tells a lovely story about dropping a technical term into a conversation with her EP-doc and watching his face as she went from 'little old lady to smart, well-informed Senior' in his mind over a few seconds!

Getting the most out of your device is a bit of a journey.  I'm 5years in, and it took a while to get my device tuned for my athletic lifestyle (run, swim, road-cycle, Pilates, Yoga etc.) and it hasn't always been easy to find the right people to help me (docs and techs).  But *most* of the factors controlling that journey lie in your hands.

Best wishes.

H/Rate Falling During Exercise - Other Reasons?

by Penguin - 2024-07-09 17:07:26

It may be helpful to put up a new thread which spells out what you wrote in your ultimate post on your previous thread (5 months ago).  You explained at that time, that despite the settings advised by your technicians and Biotronik, your h/rate could not be sustained at a sufficiently high level for your exercise demands and it fell to around 110 bpm after approx 15 mins of exercise. 

It's a shame that no one replied to that post, because there have been a lot of similar posts from people with CHB on this forum which explain similar experiences.  The advice (from memory) is to request exercise testing. Sometimes you may need to have the Max Tracking Rate increased if it is too low. 

Others with CHB can explain why this happens far better than me and your own NHS team should be able to explain too. Why don't you explore that option first?  No one wants to incur unnecessary health costs and in your shoes I would be reluctant to do so. 

Also Crusty's 'pertinent' question is a good one.  It is true that there are people on this forum who have CHB and have RR enabled on their devices, (one of our moderators for example), and therefore your programming may be justified.  However, RR is usually for Chronotropic Incompetence which is found in Sinus Node Disease.  It's hard to know from an empty bio, but you say that your diagnosis is CHB.  Ask whether you need RR (tactfully) and which diagnosis it is treating.  Then ask whether anything else (perhaps a Max Tracking Rate which may be too low for you?) could be causing the difficulties and whether exercise testing could be organised so that your technicians can see what is happening when you have symptoms. 

 You shouldn't need another opinion; to involve a manufacturer rep or to travel if you can get this organised. Hopefully, the issue will show itself and your technicians will resolve it.   Try again ! 

Best Wishes

Biotronik Consultation

by Valiant - 2024-07-10 08:17:47

Thank you everybody who has replied; really interesting and useful views.

I didn't achieve the objective of my post though, which was to get advice on where I could get advice on how I can find a UK or other consultant with Biotronik knowledge AND access to Biotronik diagnostic tools.  My Google searches for this have been wholly fruitless :-(

Thanks
V

Advice

by piglet22 - 2024-07-11 06:18:41

Although there is a lot of practical and some clinical advice in the club, you aren't always going to get the advice you want.

Rather than trawling through Google, why not be direct with your clinicians and express your concerns/aspirations.

In this very stretched NHS - 7.2-million waiting for appointments announced today - it's going to difficult to get individual tailoring.

The only approach I might make, unlikely, directly to a manufacturer of medical devices and all the ethical complications involved, might be for a recommendation of a specialist, but I have a feeling that might not work. You really need to work through your team.

I've no doubt that elite sports people with financial support could get access to very specialised device setups and no doubt this route exists.

I know for a fact that at least two of my cardiac clinical team, consultants, divide their time between the public and private sector, so approached the right way, they might point you in the right direction.

There are the private health providers, and a little digging around on Google, reveals that Spire, Nuffield, or BUPA could have the very same specialists who might be able to give you more time and probably better access to device manufacturer.

Another option might be to accept that in the present climate, it's as good as it gets