Loose lead

I had a St Jude pacemaker fitted 8 weeks ago, one lead to top chamber other to ventrical, it was set at 60 beats and I was fine for 2 weeks then a few days before Easter the tiredness and feeling like something heavy sitting on my chest returned, at the clinic when the fitting is done they hand out leaflets saying any problem call this number, (surgeon who did the job) and talk to nurse, also same type of leaflet saying call hospital pacemaker clinic (where job was done ) and talk to nurse, so I called the surgeons office, was told to contact pacemaker clinic,called there and explained to girl on the reception desk at clinic that I needed to go in and see someone as pacemaker didnt appear to be working properly and I was having problems, "I can give you an appointment in 6 weeks" I couldnt believe my ears !, thought maybe I hadnt explained properly and tried again, "but we have a list" I stopped being polite and pointed out Easter Week-end was coming up "Oh yes we will be closed for 4 days" real cheery news to someone already feeling deserted, I made it plain I was talking appointment that day, not next week next month next year, and got "Oh well come in at 11 oclock and wait" I arrived just before 11 and was seen by a technician within 15 minutes, a different approach altogether, she said the device needed "upping a little" and did some adjustments, tested it and all signs good, said "see you when your 6 weeks after op inspection is due" and that was that, I felt no more problems, saw the cardiologist 10 days ago, he had EKG done, was happy with results, went to the clinic a week ago for the 6 week after op inspection got a different technician, she did the tests, said results fine but the wire to the top chamber was disconected, I asked what would be done and she looked at me smiled very patronisingly even shook her head at me while saying "over 50% of the people who have pacemakers only one wire installations you know, and they work perfectly, I then remarked that the cardiologist had said all was well, just a couple of days before, and she said he wouldnt have known the wire was out, so I asked would the clinic be informing him and she said "Nothing to do with him" so I then asked would the surgeon be informed "no not unless the person who assesses the results of these tests thinks it is needed and they very rarely open up the wound again you know" I came away feeling that I am now reliant on a technician not the cardiologist or heart surgeon who made the decision about what type of pacemker to install, I rang the surgeons office and asked if he would be informed of the tests and was told not unless the clinic judged he needed to know.
Sorry this post is so long but although I have felt so much better and been so much more active since the installation this business has really set me back, I have lost the confidence I had in it, I am set to go on a 6 week trip in July, long flight all booked and paid for and had only agreed to fly because the cardiologist assured me I would be fine after the pacemaker was fitted, now I just keep wondering why if he and the surgeon felt a two lead one was best I am going to be left with only the one lead.
Is anyone else in same situation?


3 Comments

leads

by Tracey_E - 2009-05-12 02:05:51

It's common to put in both even if you really only need one. It's just as easy to do both at the same time, having both gives them a bit more information, and it's there as a backup should you need it down the road. If you're feeling good, I wouldn't stress over it.

St Jude pacemaker

by nat36 - 2009-05-12 05:05:42

I just got a St Jude Pacemaker ten days ago. I was having trouble getting into my shirt this morning and felt like I pulled something. The pacemaker seems to still be working but I am sore now in the chest and at the site. Did you feel any of that?
I only have one lead so I can't mess it up. How much did they tell you that you are being paced? Maybe based on that, they could tell you didn't need the other lead. I know exactly how you feel about not getting follow-up. I do not go back until the end of the month and do not even get to see my doctor, just a nurse to check everything. That is frustrating so I understand your situation. Maybe you should call and discuss it with your cardiologist just to put your mind at ease. Good luck!!

leads

by Gran3 - 2009-05-14 01:05:25

nat36 I still have soreness around at the site and its 8 weeks tomorrow since it was installed, my pacemaker is set to give me a pulse rate of 60 beats per minute, and is still doing that, and the computer was showing the same read out for the bottom chamber as it was before, but as the lead from into the top chamber is disconnected there were no results for that showing at all so they cannot know what is going on there.
Things have altered a little this week, On Tuesday I went to see the doctor who is filling in for my regular doctor who is on maternity leave, never met her before, told her what had happened and she wasnt amused, said straight away that she would write to the cardiologist and inform him what the clinic had said as it had been his decisiion that leads should be fitted into two chambers not the technicians,she was very definate and I felt better for talking to her, keeping my fingers crossed now to get a call to go into cardiologists office.
Know how you feel about not seeing a doctor, routine here is you go back to the clinic 24 hours after the op, the computer runs a test on the pacemaker, technician takes a quick look at the wound, didnt even take dressing off to look, say's "fine, see you for the 6 week check up " it was like "Job done now, go away and don't bother me" sure not the way the paper they give you before hand reads, that tells you "any worries contact us and talk"
Oh well, will have to wait and see what results from the doctors letter, hope all goes well with you.

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