Further Advice 4 weeks post-op

Hi All,

Many thanks for advice given on my previous posting - unfortunately no improvement, if anything i feel even worse, although the pain has eased.

Main symptom being getting out of breath even with the slightest exertion - this is so much worse than before my bi-ventricular placement. I went to my gp as advised, they were 'good' and referred me up to a&e. Chest xray, bloods and ecg done - no problems with any of it, blood pressure high again (165/109). No check was done on the actual pacemaker and i was senr home with furosemide as there maybe a build up of fluid (although there are no obvious signs of this).

Where do i go from here ? SOB on exertion or standing up for more than approx 5 mins, tired but cant sleep - i am so disillusioned, how can i feel worse and surely there is something else than can be done. Its not in my head but i feel like a hypochondriac.

Should i be demanding to have a pm check, if so how do i go about this, i am a single 40 yrs old woman and dont know where to turn. I have not had a pm check since the original check on my day of discharge (day after op).

Thanks in advance for any advice that can be given

4 Comments

The next step

by ElectricFrank - 2012-01-05 07:01:19

I don't know what services St Jude has in the UK, but here in the states Medtronic can have one of their reps together with the cardiologist run a treadmill test for you. This isn't the usual stress test, but rather has you exercise just enough to bring on the symptom. The pacemaker and other cardiac functions are measured to find out what is happening. If it is just a setting they can do on the spot and optimize it for you.

In some cases everything will check out just fine while you are sitting quietly in the office. It's only when your heart isn't responding to a demand for more blood flow.

I don't want to scare you, but it is also possible you have a cardiac problem even a bi-vi pacer can't solve. The only way to find out though is with some properly done diagnostics. Then you can go from there.

I agree with Cabg though that settings are likely the problem.

best wishes,

frank


thank god for knowledge

by jessie - 2012-01-05 10:01:49

you guys deserve medals trying to point people in the right direction and give them support. god bless the two of you and smitty to to help out. just had to say that jessie

How to work the UK system

by IAN MC - 2012-01-06 06:01:10

Hello Rufus14 You ask how to go about getting a PM checkup in a UK hospital. As it happens I was having my 2nd checkup just half an hour ago so I asked a few questions :-

Frank quotes the American system where PM manufacture's reps get involved. This does not happen in the UK . here reps are only called in if there are technical problems with the PM. The cardiology unit , where you had your PM fitted, will have a Pacemaker clinic which is staffed by cardiology physiologists. They are highly trained in every make of PM so whether you've got a St Jude or a Medtronic, they will know all about it... and surprise, surprise they are at the end of a telephone.

You should have been given that number when you were discharged, if not get it via the hospital swichboard.

When you talk about " demanding" a PM check it sounds a bit confrontational ( I guess that reflects how fed up you are !)..no need to be; you will find they are nice people who want to help you.

I saw from your earlier post that you are seeing a cardiologist on Feb 1st. It would make alot of sense for you to have your PM checkup before then so that the cardiologist can talk through any changes that have been made to the settings.

When you ring the PM clinic explain the situation and stress that you do need to be seen as soon as possible
and definitely before Feb 1st

Hope this is helpful, and best of luck

Ian

So best of luck

Ian

by ElectricFrank - 2012-01-07 03:01:15

Thanks for the info on the UK system. I feel at a total loss when it comes to other systems and sometimes I wonder about ours.

frank

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Member Quotes

In fact after the final "tweaks" of my pacemaker programming at the one year check up it is working so well that I forget I have it.