What to Ask

Morning everyone - been lurking for a couple of days and have now decided to post my situation and first question.

My first question: My first PaceMaker followup is coming up on 22nd April - What the heck should I be asking or looking for!

My situation: UK based, 3 Backouts in 8 months, Loop Monitor implanted. 5 weeks later, data was recovered and I was told I needed a PaceMaker inserted asap, so was booked in the next day (my heart had been stopping at night for durations up to 10 seconds).

All went well and I was discharged the next day. I then felt very unwell the next night and was admitted to A&E. Things got worse and I was diagnosed with a pericardial tamponade, which was drained in an emergency procedure on Easter Sunday. I spent a week in the acute cardio care unit before getting home and have been home for a week now.

I have a pleural effusion, so breathing is difficult at times (getting better). I'm still sleeping sat up (helps with the breathing), have strange random stabbing pains in my chest (both sides) off and on. I am so tired and struggling to do anything, but things are getting better every day.

Long term I am sure the PM will make a difference, given no more complications. But at the moment I just need to get fit again.

So, what questions should I be asking about the PM, complication, etc during my followup please?

Any help appreciated
Thx Ian

2 Comments

Hello Ian

by IAN MC - 2013-04-14 09:04:56

I, too, am from the UK and also am an Ian ( must get my name changed..there are too many of us around ! )

It sounds as though you had a great Easter... welcome back to the real world and sorry that the whole thing was so traumatic. Somebody else asked a similar question a few weeks ago and this was my reply ;-

" Questions I would be asking are :-

-- Are you satisfied with the way the PM is working ?

-- Are you making any adjustments to the settings, if so why ?

-- What % of the day is the PM assisting your heart (assuming that you are not 100 % dependent on it )

-- How many years do you expect the batteries to last on your current level of usage ?

-- Could I have a copy of the printout summary and would you explain the relevant parts to me ?

-- When do you recommend that I can function normally in terms of lifting objects / doing exercise etc ?

-- When is my next appointment and how frequent are they ?

-- Can I ring you at any time if I have any problems or questions and what is your number. ?

In your case I'd be asking quite a few questions about the pericardial tamponade and the pleural effusion. What caused it... for example, did they puncture your heart during the procedure ?? I know this can be one of many of the potential causes .

I'm glad things are "getting better every day " . I'd be asking what their prognosis is for your complete recovery. How long is it likely to take etc

Best of luck

Ian ( at least the sun is shining in the UK today so that will help !! )







Thank you

by BigThinTiger - 2013-04-15 06:04:43

Thank you.

Some great suggestions. I did keep a diary when I originally started to have my blackouts and treatment, so I'll start that again.

I have got to say (for anyone else reading this), the actual procedure was really simple and I felt good when I first got home. Its just a real shame about the complications, which I understand from the web are very vary rare.

No doubt I will have more questions as I get to grips with this and understand more.

You know you're wired when...

Your ICD has a better memory than you.

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