Sick of it!!!

If I could I would rip this PM out!! Doesn't it just make you sick when you feel terrible with symptoms (again) but the PM techs say "your PM is working fine". Well, I don't feel fine!

Once again they tell me the PM is fine. I've had several "battles" now where I've had to really fight to get them to listen.....& I've been right each time. We know our bodies.
I've had a terrible encounter today with the pacing people & am just sick of it. I almost walked out of the waiting room, before being seen. Right now I never want to see any of them ever again.

For those that know me, I'm not normally like this but today....!!!

Probably not helped by fact hubby had serious accident 2 weeks ago...head injury....they were scanning for bleeding on his brain. He is having continual problems with concussion, I am really concerned about him. He fell 6ft off a ladder, his head bounced twice off the ground with the force, he was unconscious for a while. Happened in front of my children (well, young adults of 24 & 21). I was at work & hubby was brought in as a major trauma call in the A&E dept at the hospital we both work at.

And tonight my e-mails have gone down so the only people I can contact are my friends on here.

Apologies for ranting.

Best wishes to all
Janey

7 Comments

Thank you Marty

by Janey L - 2014-05-14 03:05:01

Thank you Marty for your quick response. I just feel I need a bit of TLC right now.

I wish I could fire my techs but unfortunately here in the UK we are stuck with who we get. I honestly feel like never going back there, & I've never felt like that.

I often think that if the techs had a PM, then they MIGHT just understand us a bit better. They look at their computer & just don't listen to the patient & their symptoms. I'm sick of "battling" with them to get anywhere.

Thanks again
Janey

Hi Pookie

by Janey L - 2014-05-14 03:05:14

It's great to have you back Pookie! I have missed you on here.

Sadly here in the UK we NEVER see a PM rep. We get the PM techs & that's it.

It's just the rude attitude I had to put up with today, from the tech I always see. She phoned me at work, before I even left for my appointment, & was so rude I was almost in tears before I even got there!! Then she was rude to me again in the waiting room.....hence I almost walked out, never to return.

Not only that, she left me with the impression my EP doesn't care about me anymore & I know that is definitely not true. He is one of the kindest Dr's I've ever come across (& I've worked in the NHS with many Dr's, from all levels, for over 30 years). He has been an excellent EP in the 5 years I've been seeing him.

I cannot believe how unprofessional the tech was today. We all get bad days at work, but no way would I speak to any patient the way she spoke to me today (& I've worked with lots of patients in my NHS jobs).

Best wishes Pookie
Janey

Hugs

by Pookie - 2014-05-14 03:05:31

Firstly, I am so sorry to hear about your husband and am praying he will be okay. How very stressful on you and him and the entire family.

Secondly, it is not uncommon for it to take a gazillion trips to the hospital to get them to adjust your settings to YOUR particular needs. I know this is not what you want to hear right now. It took my "team" 5 and a half YEARS to finally get my settings correct.

I think it may be worth asking to have a Medtronic Rep in with you the next time you have your pacer looked at. Matter of fact, if you are not feeling better within a week or two, I would insist to be seen again. And tell them point blank that you don't want to hear that the pacemaker is working just fine...we KNOW that. It just isn't set properly!!!!!!!!!!!!

For me it was something as simple as turning one of the settings OFF when in 99% of the cases this setting works just fine for everyone when it is ON. The setting that was finally adjusted and gave me my life back was the Optimization which is part & parcel of the Rate Response in my Medtronic Enpulse. So, basically what I'm trying to say is that your Tech has to take the time to go thru each and every setting and think how it will affect you, NOT the general public who has pacemakers.

Personally, I would call back and ask them to schedule you an appointment when they have a lot to time to actually sit there (hopefully with a Medtronic Rep) and brainstorm as to what setting(s) could be adjusted to make you feel somewhat normal again. Don't be intimidated or afraid to ask for this - it's your body, it's your life and you deserve to feel your very best.

I'm an old member and have just recently come back so I missed what your symptoms are. If you want to, you can private message me and maybe I can come up with some ideas on how to get them to help you. I'm not in the medical field, but I've had my fair share of issues dealing with settings and them not listening. Or, I am just here to support you - you can vent to me any time you want. I am here for you.

I promise everything will turn out okay, it's just going to take time and patience.

Pookie

Vent Received!

by Marty - 2014-05-14 03:05:58

Janey,

I'm sorry to hear that you're having a bad time lately, and I really hope your husband is okay, what an awful accident. Good for him that he has you to watch his progress with the injury, and BOY, can I relate to having bad interactions with PM managers. Here, they work for Medtronic, but I had one in the Air Force that seemed to look at all of us as his little mice out there with our devices. Cold, unprofessional jerk. I fired him, refused to see him again. Sometimes you gotta hold lame "professionals" accountable.

Take care, vent whenever you need to - we've been there!

Marty

NHS

by TickTock-UK - 2014-05-14 04:05:18

Hi Janey,

If that's the way they treat you and you work for the NHS..What chance have we got...you are right they don't listen to us and yes we know our bodies better than them..I would put in a complaint.

Sorry to hear about hubby, hope he gets well soon..

Len

Hi Len

by Janey L - 2014-05-14 04:05:44

Thank you for your reply. My manager at work said I should put in a complaint too. I don't usually complain about things but I am so upset at the way I was treated, I think maybe I should.

I would also like to contact my EP about it but PM tech gave the impression he agrees with her about everything, even though he only has her version of my symptoms & I can imagine she did not give him the full details. I'm not due to see him until August & she said she very much doubts he will see me sooner. Now she speaks for him too!

It sure is true that we patients have to fight for ourselves these days.

Best wishes
Janey

More later

by donr - 2014-05-15 08:05:00

Janey: Sorry to read of your travails.

More later, off & running for the full day.

Don

You know you're wired when...

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