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Ray H. Recipient

Sleeping with a controller

I have had my LVAD for 2 1/2 years and have devised clothing options for daily use, including vests, fishing vests, LVAD shirts, and concealed tactical shirts that my wife sews a pocket on for the controller.  My problem has always been with the belt for the controller.  I am fat and have a flat hips/butt that makes me wear suspenders for wearing long pants, because, if a wear a belt and the belt slips below my tummy, the pants are going all the way to the ankles for a public surprise.  My day wear precludes problems, but I have never figured out what to do at night.  My skinnier friends wear the belt at night or one of those stretchy waistbands to carry theirs.  I purchased one made for LVAD and one that was for carrying your iPhone while you run, but both would roll and drop when dragging my power cord to the bathroom in the middle of the night.  For all these years now I have been sleeping with the belt around my neck and under my left arm.  I have gotten used to it with my soft fabric sleeve on the belt where it sits on my neck.  I wondered if there were other chunkies out there with a similar problem and what their solutions have been?

 

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Pam J.

Hi Ray.

Just a quick comment or two.  My husband has had his LVAD 2 1/2 years and has always just slept with the controller laying next to him on the bed. Furthermore, he has never used the outlet cord at all because he considers it cumbersome and a tripping hazard.  He just makes sure he has fully charged batteries before retiring at night.  Have you considered putting the controller in it’s shoulder bag without actually putting it over your neck/shoulder, and laying it on the bed next to you?  As long as there is something on the side of the bed like a nightstand or something so it doesn’t accidentally fall off the bed it seems perfectly safe to my husband, and a lot more comfortable! 

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In reply to by Pam J.

Ray H.

Thank you Pam.  I have tried sleeping with it next to me, but I don't have anything there to keep it from falling off.  It is on my left side and that is the side of the bed from which I get out, so I can't put anything in my way.  I have tried it with just the controller in one of my VAD shirts, but really wanted a break from the spandex.  I would have difficulty sleeping in batteries, as where I keep them in under each arm in the shirt would preclude me from sleeping on my side at all.  Before LVAD, I spent most of my time sleeping on my left side.  Psychologically, I can't make myself sleep all the way on my left side, but I can do it on my right side.  In batteries, I would have to sleep the whole night on my back, which is very difficult for me.  I am, by the way, not sleeping with the controller in the shoulder bag, but rather in the belt holder slung over my shoulder to hang on my left side.  You have, however, given me an idea I may have to play with.  I have an IV holder not serving any purpose that I may put next to the bed and hang the belt with controller from one of the lower hooks.  I could get used to moving around it when I get up, and the controller would be secure from my tossing and turning.  Thank you.

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Tonya E.

Hi Ray, 

I am new to the lvad world. And i find it easier to sleep with my controller next to me. However i have the belt attachment hooked up, so i can just put it around my neck, when get up to make that 3am bathroom run. My wall power cord is long enough to be brought on the journey. And so far i haven't had any problems sleeping with it and bring it to the bathroom with me.

 

Tonya

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In reply to by Tonya E.

Ray H.

Thank you Tonya.  I am too insecure about it being next to me untethered.  When I first started out, I tried it a couple times and invariably knocked it off the bed and pulled on the foley anchor.  I don't really lose out on any sleep with the belt looped over me, but I appreciate any input on other ways to do it.  By the way, I usually only get up once or twice to go to the bathroom, so I have you beat!