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Larrie T. Recipient

Have you ever done an emergency controller change?

Mon, 11/25/2019 - 12:33AM

My name is Larrie and I’m Story Producer for a show called Life on Batteries, as well as an LVAD patient myself.  I was hoping you could help me with research for an upcoming episode by sharing your experiences around emergency controller changes.  This also may be a good discussion topic in itself, of interest to those of us who have never had to swap out controllers in an urgent situation. 

LVAD systems typically require that you carry a spare controller for use in the event of an equipment failure.  Since your initial LVAD training, have you practiced for an emergency controller change?  Does anyone practice the procedure regularly?  Do you feel prepared and confident to actually do it if necessary?

For those who have actually experienced an emergency controller change, please share your story in your own words, addressing as many of the following questions as possible:

  • Where and when did it happen?
  • Did you have any prior warning that it was going to happen?  If so, what?
  • Were you alone, among people, or with someone knowledgeable about LVADs?
  • How far away was your emergency spares kit?
  • Describe what happened.  How did you do it?  Did you have assistance with the swap?
  • Please include anything else those of us who have never needed to swap a controller may want to know.  

Thanks in advance for sharing!

Larrie

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Ruth or Gary L.

Mon, 12/02/2019 - 12:08PM

I have not had to do that yet.   And I am scare to have to do it.  I should practice!!!

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Larrie T.

Mon, 12/09/2019 - 12:36PM

I am assuming when you say "Do not practice", you mean do not actually unplug your driveline while practicing for an emergency controller change.  That's an important thing to keep in mind.  Our original LVAD training taught us that all controller disconnects have risk, so they should left only for actual emergencies.  

Any practice exercises I've observed stop short of actually unplugging the patient's driveline.  ...Other than once, right at the hospital, under medical supervision, as part of a controller firmware update.  But again, that disconnect was necessary (and supervised by a doctor, two nurses and a representative of the LVAD manufacturer).  

Thank you for drawing attention to this, and for helping make our show better.  As we develop this episode, we will need to make it abundantly clear that while practice and preparation may be very helpful in preparing for an emergency, never, ever actually unplug your driveline if you don't need to.  

Larrie

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Lissa N.

Mon, 12/02/2019 - 4:54PM

My husband's LVAD (Heartmate III) was implanted on August 5th of this year.  Our Hospital VAD Coordinator made us practice changing the controller over and over again (she called it boot camp and we used donated non-working batteries and a non-working controller to actually better understand the process) and I'm glad she did!  Even though I'm fairly confident of my ability to handle the controller change, I'm not sure my husband could do it if he were alone.

Would I panic if i had to change his controller? Probably!  But I know I'll never forget power - person - power as the order of steps to get it changed over.  We don't live our lives expecting the controller to fail, but if it does, I think we could handle it (and then freak out afterwards).

We always carry the spare batteries and controller with us in a shoulder sling bag (purchased at a Cabela's store). We call it our Go Bag.  Wherever we go, the bag goes too!  

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Garicke R.

Mon, 12/09/2019 - 11:35AM
I have had to do an controller change. Not a fun day. I was mowing my in laws property and got off the mower to an alarm going off. I looked at the controller and it had heart broken light, wrench light and battery light. And an a display but don't remember what it said. I figured it was just no battery power. Then the problem. I thought I had my back up stuff with me and I didn't. It was 25 minutes away. Man did the oh shit meter hit. I called my wife and we raced to met her. By the time I got to her I has weak, had hard time moving arms/legs and lips turning white. We did a controller change and batteries and headed to the ER. Still had issues at ER. Life line was almost called. I finally started to get blood flow to the extremities I went from feeling like a 2 to a 8. My team interegated the device and determined that I was 5 minutes with out power at all. I thought I was 20. They told me 20 min. and I would have been dead. Don't leave home without batteries and controller. :) My wife did the change for me. We have done it 2 other times for controller hardware errors. Had no real issues. I sat down placed batteries in the new controller than changed out the controller. It took all of 2 sec. The other one was one month after that. They determined it was a software error.