I've been optimised!

Hi all. Today I went to the hospital for my AV delay optimisation. All looking good so far.

The Head of Pacing & a Dr (not my EP but a registrar, I'm in the UK) did the optimisation. It was done by echo scan while connected to the PM computer as well.

They found my AV delay was set at 180 but this was too long. With the echo they found it was optimal at 140. It was fascinating watching them doing the echo & seeing the changes
in chamber filling as they altered settings etc. They did scans at different AV delay settings to find the optimal. They also increased by HR by 10bpm in stages to observe the changes on the echo.

The Head of Pacing reset my AV delay to 140. She also turned on a function that shortens the AV delay on exertion (sorry, I can't remember the name of the function).....this was not on before.

My lower rate has been lowered to 70 (from 75), my rate response altered because of the other AV delay alterations.

When I left the hospital the first thing I noticed was that I could walk SO much better....and my chest no longer feels tight. It all feels really good so far. My breathlessness has gone too.

Not sure about the neck pressure yet, time will tell if that has gone.

Interestingly they said I was the 5th patient they had seen recently who had a dual chamber PM & who needed optimisation due to symptoms. In each case they found the AV delay was wrong & so they had to adjust it. The Dr asked the Head of Pacing why don't they optimise all dual chamber PM patients who are both atrial & ventricle paced....she said because they don't have enough staff or resources. They only optimise bi vent patients routinely & dual chamber patients with ongoing symptoms.

She also said they normally set the AV delay to what they think is suitable & don't turn on the function that shortens the AV delay on exertion....as this is usually ok for most patients. It is just the few who have ongoing symptoms who get optimised.

Thank you all for your help....hopefully this has sorted my symptoms out.

Best wishes
Janey

14 Comments

Thank you

by Janey L - 2013-02-18 08:02:00

Hi Mtulau...thank you for your very kind comments. I will send you a private message.
Best wishes
Janey

optimisation

by mtulau - 2013-02-18 08:02:31

my EPman believes intelling me nothing, and so itis fascinating when people,like you, write in with that easyto understand snippets. Apparently instead of putting up with breathlessness, aches, problems walking, your pm can be customised to suit. I am having a AV ablation today and will be fully pm dependant and was therefore very interested in the above. Thank you Janey L. MT

Thanks all....

by Janey L - 2013-02-19 01:02:01

Hi all
Thank you for all your comments - & some interesting points raised too.

I agree it is worrying how many patients may be left with settings that are not ideal but maybe don't notice as they don't have any symptoms. What about any long term effects?

Every patient must be different in that their heart condition may be different, diagnosis, age etc...so how can standard settings fit all (as opposed to optimisation).

I have to say I am SO glad I had it done as today I've been walking so fast it is unbelievable. Inga- I might even get to the jogging after all!! Do you remember I said to you I was really impressed that you have been able to jog following your AV node ablation but I doubt I could do it at my age (50). Today my poor husband has been struggling to keep up with my walking as I'm going along SO fast now. Quite amazing!

I had one episode of the neck pressure today but it lasted less than a minute - previously I was getting it for hours & hours. So a big improvement with that so far.

They told me yesterday that because my AV delay was set wrong, my atria & ventricles were not filling completely.When they changed the setting they could see on the echo that now they are filling completely & properly. It is amazing that a 45 minute test & alteration of settings has made such a huge difference...& I noticed it as soon as I left the hospital.

I'd never heard of optimisation until I posted my first message last Wednesday & Idebaugh replied (thank you again Idebaugh). Less than a week later I've been optimised & am feeling SO much better!

I'll let you know how I get on but it all looks really good so far.

Best wishes
Janey





Optimized

by donr - 2013-02-19 01:02:10

Congratulations, again. Sounds like it was successful.

Don

Qualifying level of symptoms ?

by IAN MC - 2013-02-19 05:02:53

I find it slightly worrying that , because of lack of resources, dual chamber patients are only optimised if they have "ongoing symptoms".

It seems to me that symptoms can range from not quite feeling as well as you think you should.... to profound breathlessness if you walk a few steps..

I wonder how they decide what severity of symptom qualifies you for optimisation?

Thanks Janey; you've added another item to my agenda for discussion at my next check-up.

Great news for you though and I hope the improvement is maintained.

Ian

Optimised

by donb - 2013-02-19 07:02:52

Hi Janey, What a great report !! I had my 5th replacement about 3 months ago with 1 interogation since. I haven't been really as satisfied with my settings but also thinking the old age symtoms. As I had a Medtronic replacement for my St. Jude I found the factory rep not very cooperative compared to my previous St. Jude rep.
As I had a very bad site situation I've been really taking it cool on exercise workouts. I got on my Airbike & Treadmill today & just didn't feel the normal get up & go along with an elevate HR. So, Happy for you Janet, it's about time for your improvement.
DonB

Medtronic rep

by ElectricFrank - 2013-02-19 09:02:05

Something to keep in mind in dealing with the reps is that they are ultimately under the doctors command. They not only are required to follow his/her orders, but ethically can not inform the patient that they disagree.

Very early in my experience with the pacers I sensed this going on. The rep agreed with me as an engineer, but didn't dare butt heads with the cardiologist. As some of you know I'm willing to tread where angels cower. I requested a meeting with both rep and cardiologist in the room, and let them know that I didn't "give a damn" about their protocol. I expected each to be free to inform me of their opinion, and I would consider it carefully. I would then instruct them as to what I wanted done. I don't think they had ever had that happen before. We've had a good relationship since.

frank

Good news

by golden_snitch - 2013-02-19 12:02:31

Hi Janey!

Great to hear that the optimization seems to have done the trick! I was laughing about your topic "I have been optimized", but in fact by optimizing the pacer settings, your performance is being optimized, too :)

Hope you continue to feel better - good luck!
Inga

Great Information

by ElectricFrank - 2013-02-19 12:02:36

There are several settings that really should be optimized as you experience, and it should be done in all of us. Just because we don't feel noticeable symptoms it doesn't mean that we would feel even better with the best settings.

Who knows what future problems are caused. The wrong AV delay results in poor coordination of atrium and ventricles and would seem to put an extra load on the heart. How about the reports of CHF with long term pacing?

frank

Reps

by Janey L - 2013-02-20 01:02:21

That's what I find so different over here in the UK. We never see a PM rep. My PM check ups are done by PM technicians with no Dr present either. I do see my EP in clinic & he always checks my latest PM report.

What happens elsewhere? Do you have a rep present at all PM check ups? And a Dr too?

It is interesting how these things vary depending on which Country you are in.

Thanks for all your great comments, much appreciated.

Best wishes
Janey

Janey,

by sue uk - 2013-02-20 07:02:15

l am so,so pleased for you :-) It has been a long time getting sorted but if the end result is as good as it sounds its well worth the wait !!!
Will mail you soon,got a lot going on at the mo'
Take care (dont over do things)
Sue x

It's a different world here !

by IAN MC - 2013-02-21 05:02:30

Don, I'm sure Janey will confirm that, in the UK we are in a room half the size of your mop cupboard ( everything in the US is bigger than here as you know .. even the patients ! )

In the apology for a consulting room there will be :-

1) Me
2) The PM technician

Full stop . That's it . Nobody else !

- we never ever have manufacturer's reps in contact with patients

- it is slightly easier to see our Prime Minister than it is to see " The Great Man "

- why do you have a nurse in there ? our nurses spend their time looking after the sick !

Our PM technicians , or Cardiology Electro-physiologists to give them their full title, are highly trained in all aspects of PM care and cardiac electrical malfunction.

The system seems to work OK ( on a good day ! }.. but it is fascinating that different countries have different approaches for post-PM care . Which country has the best system ? ... at the end of the day I guess it comes down to individuals regardless of their job titles.

Cheers

Ian

So different!

by Janey L - 2013-02-21 12:02:20

Thanks Don & Ian for your replies above, I have to say I did laugh at both your brilliant descriptions! I can just imagine Don in this mop closet with all those people!

Like Ian, when I go I am behind a curtain on a trolley...& there is just me & the PM tech & their computer. They only have 2 curtained cubicles in which to see the huge number of PM patients they deal with (no wonder they don't have room or time to optimise everyone as well!!).

Previously I have just had my PM check ups & then been told to return in 3 or 6 months. Since my problems last year & the AV node ablation, now I'm "lucky" in that I get to have my PM check & then see my EP in clinic straight away afterwards. That doesn't usually happen, you might only see him once or twice a year, actually more likely his registrar instead of him.

I have found one or two PM techs to be quite rude & unhelpful, won't explain anything or answer questions.
Now I get to see the Head of Pacing, or her Deputy, & they are both excellent. They will always take the time to explain things & answer questions....which is how it should be. Sometimes I think the PM techs don't realise or understand what it is actually like to have a PM as they don't have one themselves.

It sure is different here in the UK but as Ian said, at the end of the day it depends on individuals & if we get good PM techs over here, that's fine.

Best wishes
Janey

Varies from practice to practice

by donr - 2013-02-21 12:02:30

Janey: When I have my PM downloads, the mop closet we collect in is standing room only.

Crammed in there are:
1) The Great Man
2) His note taking Nurse
3) The Medtronic Tech
4) An occasional Medtronic trainee
5) Me
6) My Good, long suffering Wife
7) Sometimes his Head Nurse
8) a cart w/ the PM computer & printer
9) 4 chairs
10) A small desk long enough for the Great man & his Nurse
11) An examining bed

The normal procedure is that a nurse records all the routine data for my file; updates the Meds list, takes BP, pulse, O2 saturation. Leaves & sends in the Medtgronic guy.

Medtronic Guy runs the download & hands me a copy of the print out. Answers any questions he can or is permitted to answer. Gives the nurse outside the "High Sign" & in troops the Great Man & his note taker.

Everyone settles in place & we discuss many things - sailing ships, sealing wax, cabbages, kings, Spitting cobras, birds of the African veldt, His latest preemie granddaughter who was lost at three days old when NYU Hosp flooded during Hurricane Sandy - even cardiology. He & the Medtronic guy discuss the download, I ask a few more questions; he dictates his official report of the session & leaves. The Head Nurse remains for a final Q&A session & a detailed review of the printout strip. Makes a second copy for me & we leave.

Been essentially that way for ten yrs.

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