Battery in replace mode for 6 mo

RYLN

by Grateful Heart - 2017-06-16 11:19:27

Did you do any of the suggestions we gave you two weeks ago?  What did the patient advocate or your state representatives say?

We have been trying to help you but you have to take the next step.  Get a report from your doctor stating your device is in EOL mode and needs replacing.  Go to social services with it and get the paperwork started.  I worked for social services many, many years ago in NY.  If not at all qualified, they would approve "Emergency Medicaid" for needed surgeries/ life saving measures.  I know there are many changes in government but I would think that has not changed.  

The lines were always long so take a book or magazine with you and maybe some water.

Just one more note:  My understanding is most people do not feel better when their device stops working.  Robin is unique.

Grateful Heart 

end of service

by Tracey_E - 2017-06-16 12:00:24

So, fill out the paperwork and schedule a surgery date!!! I'm not sure why you're delaying? You need to be proactive, follow Grateful Heart's advice with the doctors and hospital. Do you qualify for Medicaid? Fill out their paperwork and take it from there. When someone doesn't call back, follow up. When someone gives you the runaround, ask for a supervisor. Advocate for yourself. You aren't going to die. What you are going to do is feel really bad. Take care of it now, before that happens. 

Are you still in replacement mode or did it switch to end of service (EOS) mode? Each one lasts 3-6 months so it's not going to turn off yet. Once it changes to EOS you still have about 3 months until it turns off but you won't feel good during that time because it has limited function. Once it turns off at the end of EOS, your heart will do what it did before you were paced. Just because we pace every beat doesn't mean the heart doesn't beat on its own. Dependent doesn't mean the heart will stop with out it, just  means it will slow down a lot. Some are safe to drive, some are not. They should be able to tell you what your underlying rate is. Mine has been anywhere from 20 to 60. At 60, I could function. At 20, I would not be driving, would not be doing much but sitting and watching the world spin around me with my blue lips. There is no need to let it get to this point. Make the call. 

Sounds like you need clarity

by Gotrhythm - 2017-06-16 13:12:56

Having no personal experience and no expertise, I don't really know whether it's safe to drive or not. If it was me, I'd probably think well it's about as safe today as it was yesterday.

I do know when a friend needed an emergency pacemaker for neurogenic vaso-vagal syncope, the doctor made it clear that it wasn't safe for her to drive--whether she was feeling well or not. She could just pass out at any time for seemingly no reason and with no warning.

But that's probably not the case with you. Still, time's a-wasting, girl!

After I read your post a couple of times, I began to wonder if you were asking the question you really wanted the answer to, if you know what I mean. And if the answers you got actually helped you know how to take the next step.

Feel free to message me privately if you'd like a more personal discussion.

I'm not nearly as knowledgeable as many here, but I'm real good at sorting through a problem to find out the right next question to ask in order to get what you really want.