Sleeping with a controller
Thu, 09/10/2020 - 8:31AMI 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?
Sleeping With A Controller
Mon, 09/14/2020 - 1:22PMHi 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!
In reply to Sleeping With A Controller by Pam J.
Ray H.Sleeping.
Tue, 09/15/2020 - 8:53AMThank 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.
Sleeping with controller
Mon, 09/14/2020 - 2:30PMHi 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
In reply to Sleeping with controller by Tonya E.
Ray H.Thank you Tonya. I am too…
Tue, 09/15/2020 - 8:59AMThank 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!
In reply to Sleeping with controller by Tonya E.
Ray ..LVAD somnambulism and the controller unit
Mon, 09/21/2020 - 12:55PMHi Tonya,
Yes, I sleep with the device and pump controller the same way and use the same routine for 3 am nature calls.
Once, though, I tripped over the cord and pitched headlong into the bathroom vanity, at 3 am, in dim lighting ... that was fun !
Ray
In reply to LVAD somnambulism and the controller unit by Ray ..
Ray H.And we go to the bathroom at…
Wed, 09/23/2020 - 4:06PMAnd we go to the bathroom at the same time even! Who knew? I sometimes make it all the way to 3:30 a.m. We have motion-activated nightlights on my way to the bathroom and one in the bathroom so I don't have to turn on any lights. No tripping so far, but I really do like those lights!
LVAD somnambulism and the controller unit
Mon, 09/21/2020 - 2:51PMHi Ray. The potential to trip over the cable is exactly why my husband never uses it, as I stated in my comment above. We’re wondering why more people don’t just use the batteries to sleep since they last approximately 6 hours each?! Comments welcome, please!
Thank you!
~ Pam
In reply to LVAD somnambulism and the controller unit by Pam J.
Ray ..Batteries only sleeping
Mon, 09/21/2020 - 4:39PMI was told by the LVAD people that there was a reliability issue with the power-source autobus transfer mechanism ... power can unexpectedly switch from a charged source battery to a depleted source battery while the patient was not conscious to hear the alarm and correct the power disconnect. To mitigate this risk (they said), the LVAD power sensor needed the active line power connected at all times while sleeping.
In reply to LVAD somnambulism and the controller unit by Pam J.
Larry B.Probably because every team…
Mon, 09/28/2020 - 11:18AMFor Pam. Probably because every team I know puts the fear of god in their patients about sleeping on batteries only! Can you imagine the lawsuit if someone died for the simple reason they didn’t hear a low battery warning after their team told them it was ok to sleep on batteries? They can come up with new reasons anytime you ask but in the long run it’s all about potential legal liability! I’ve had my HM3 for 4 years now and after almost tripping over the cord several times in the middle of the night the first week home I went to sleeping on batteries and have never looked back. My batteries last at least 15 hours so as long as I remember to change them at bedtime I’m good to go. There have been a few times I forgot to change them out and the warning beeps started in the middle of the night but even though I wear hearing aids I take out at bedtime, one would have to be stone cold deaf to not hear the alarm. I just put my bag between between our two pillows and it works fine. Do whatever you are comfortable with.
Sleeping with the controller
Tue, 09/22/2020 - 1:40AMHi, ray
its Steve here from Liverpool first time on the web site,i had a lvad for close on 4 years know and never had any problems with having my controller on my left hand side whilst sleeping also attached to the mains the controller is in the holster resting on the bedside hope you will try this again
good look Ray
In reply to Sleeping with the controller by Stephen R.
Ray H.Thanks Stephen.
Wed, 09/23/2020 - 4:08PMThanks Stephen.
My husband sleeps in a…
Wed, 09/23/2020 - 3:38PMMy husband sleeps in a sleeveless LVAD shirt, which positions the controller in an elasticized pouch over his abdomen. This way, he can move around without worrying about knocking it off the bed or me getting an arm tangled in his cord. He tried a belt but didn't care for it at night, although he uses an elastic wrap over his dressing when he's doing things outdoors to make sure the dressing doesn't come off if he gets sweaty (we live in Florida!).
In reply to My husband sleeps in a… by Michelle T.
Ray H.Sleeping with the controller.
Wed, 09/23/2020 - 4:12PMThank you Michelle, I will look into the sleeveless variety. I have the short-sleeved LVAd shirts that I have tried before, and they work fine. But after wearing one all day, I really like to get into something with a soft cottony feel to it. I'm guessing that the sleeveless type is also Spandex like my sleeved ones.
Probably because every team...
Mon, 09/28/2020 - 11:52AMLarry B., I completely agree with your analysis. Unfortunately hospitals, and a multitude of other people/businesses/organizations must protect themselves from lawsuit-happy people. Ironically, my husband feels the danger of tripping on the long cord far out-weighs the danger of not hearing the extremely loud warning alarm on the controller. The potential for suing over tripping on the cord is just as possible as the other. But like wearing masks or not, people have to do what gives them most comfort. Thank you for your input!
Sleeping with the controller
Wed, 12/30/2020 - 3:21AMHi, I have had my LVAD since 12/2018 (just past my 2 year anniversary!). I slept wit the bag & cord for the first couple of months, but found it too problematic to get disconnected from the cord, reconnect the 2nd battery, and still get to the bathroom in time! The cord isn't long enough to reach. Once I stopped using it I never went back, like others, the risk of not hearing the low-battery warning (which has woken me up from a dead sleep several times) is FAR outweighed by the risk of tripping or forgetting to disconnect!
As far as sleeping with the controller, I use a backpack (I have several) with a zipper top that terminates on the left (or right if you have a RVAD). I use it 24/7, and at night it sleeps on the bed next to me. If you have a twin bed, or sleep on the left side of the bed, consider investing in a portable side rail that tucks under the mattress. It will keep the backpack on the bed and help you sit up too, and you should be able to buy a short rail that allows you to get up on that side too. You can also try tucking a pillow under the sheet, to act as a wall. Lots of ways to get comfortable.
My husband just had his LVAD…
Mon, 01/04/2021 - 2:27PMMy husband just had his LVAD less than a month now. We are still learning and finding ways to work with it. Luckily for now, the wire is long enough from the bedroom to the bathroom. Overnight, he just keeps a urinal next to the bed so he doesn’t have to make that trail and risk tangling up or tripping on the wire. He has used the sleeping bag but as he’s losing more weight, the bag around his waist tends to fall down and it can’t get any tighter than it is. We probably need to order a smaller size. So he clips the controller onto the bedspread next to him and if he has to go bathroom in the middle of the night he’ll just put the cords around his neck and carry the small pouch with controller.