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Ginger H. Recipient

Charging while traveling

Wondering about sleeping with batteries if an electrical outlet is not available or reachable to connect the charging station when traveling?   I am practically wondering how the control unit would be charged overnight if it is not plugged in?

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BROOKE L.

It is my understanding that the reason it is recommended to sleep "plugged in" is because the alarm is much louder. The batteries are charging the controller so that is not the reason. My husband always sleeps with his batteries as he is a very light sleeper and it is more convenient for him getting up during the night.

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Tom M.

Basically it comes down to personal preference.  I personally found sleeping plugged in was easier to sleep without the weight of the batteries.  If you don't have easy access to an outlet then sleeping with the batteries is very doable.  My Heartmate 3 had a long enough cord to reach an outlet in all the hotels or residences I visited. 

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In reply to by Tom M.

Ken D.

I am getting my LVAD in 2 weeks. I have been told by the team to sleep plugged into an electric outlet. I have an electrician coming this week to put in a more convenient outlet in my bedroom. 
I appreciate all the info and advice on this site.

 

ken

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Jillian A Fitzgerald B.

As far as sleeping on batteries vs. mobile power unit, we ALWAYS tell our patients to sleep on the mobile power unit and NEVER batteries. If you sleep through the alarms that are generated once the batteries get low and they deplete fully you will only be supported by the backup battery that is in the controller. That battery will only then run for a short period of time before the pump shuts off. It would be wise to find out, prior to traveling, the electricity situation. You don't want to get stuck somewhere, for an extended period of time, without electricity...

 

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Scott C.

You can't expect any team member involved on the clinical side to say anything but NEVER sleep with you batteries.  Ask your LVAD coordinator when the last time was he/she had a VAD and then they can tell you what it's really like.  As most of us get up multiple times per night the act of unplugging from the wall then plugging batteries in then back to unplugging batteries and plugging into the outlet is not practical or conducive to getting a decent nights rest and I have had my LVAD since 10/2018.  I have NEVER in all this time plugged in at night or even in the car for that matter.  Sorry for the rant but advice in CAPS is only ever going to be by the books and doesn't take into account what I've already mentioned.  Yes risks are present, but what part of your life doesn't have risks.  Your subject to tripping and falling so what's the clinical stand fast solution, yep,  don't get up and reduce your fall risk.....Such nonsense sometimes.  And yes, I'm exaggerating with that analogy but you get the point.  Good luck to all with VAD's and make your own informed decisions and go from there.  Be aware of all the risks and compare them to your desired quality of life and enjoy yourself.   And to all those LVAD team members out there I'm sure this offends you but just recognize that this is the perspective of a long time VAD user and it doesn't necessarily represent your opinion which is pretty much mandated by your position....

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Ralph P.

I have taken several trips since I've had my LVAD & I have taken all of my equipment with me when doing so. It might be inconvenient sometimes but I've never had any trouble with access to any electrical connections on my trips.

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Michael S.

I have been a long time reader here but never posted. You can look at my verified profile, I am a VAD NP. 

In reply to Scott C, sleeping on BATTERIES is FOOLISH and DANGEROUS. The reason that all of us VAD coordinators tell patients to sleep on wall power is that we [I] have had several patients who have died while sleeping on battery power and the alarms weren’t heard as they were behind closed doors, the controller was under a blanket, etc. Don’t die a fool.

 

I always warn patients when they go on this forum: “You’ll see the good, the bad & the ugly on MyLVAD.com forums. Use common sense when reading them and come to me with questions.” This reply definitely fits the bad & the ugly. 

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In reply to by Michael S.

Kaycee C.

I understand the warning but this is coming off as condescending. Electric is not cheap. Some patients have no choice but to sleep on batteries. Regardless if they do or not us LVAD patients are only trying to live and with our situation everyone should be more understanding. This post is the reason I put off getting my LVAD until I went into multisystem organ failure and was days away from dying because people like this shame us. I’m privileged in being able to have electricity and able to afford it so I can plug in at night but some of these LVAD patients aren’t that lucky. We’re all doing our best and trying to survive. 

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Scott C.

WIth all due respect to NP Michael I wholeheartedly disagree with the term Fool as you've referenced me in your response.  I've had my LVAD since 2018 and have had No issues with it to date.  After implantation  I have NEVER been called a FOOL by any of the dedicated LVAD staff that work very hard to look after their patients. They know and have always known that I use batteries 24/7 and will continue to do so as I pursue the highest quality of life that I can and will continue to do.  While they also recommend plugging in at night they do understand why I use batteries instead and it's been left at that.  I was politely advised of the risks associated with batteries only and as a result of diuretics and the need to be out of bed on average 4 times each night to visit the restroom I've chosen batteries for convenience and achievement of the best quality of life for me.   When I have a question or a concern I hit the pager and always get a call within seconds....that has been true since implantation.....

Which brings me to my first point....They answer and address my questions and concerns within seconds...every time...all the time.  You state you've been a long time reader but never posted....???  Why not?  You felt strongly enough about this situation to move you to respond.  Why haven't you addressed any of the concerns over the years with any of the other posters?  Seems to me the point of this forum is to respond to patients and families to address or answer their concerns and hopefully receive some guidance.  I have posted several times when I thought I had something to offer and I'm sure the comments were appreciated.  After all they were solicited, again, the point of the forum.  Trolling the forums with nothing to add to any of the comments you've indicated you have read seems like a disservice to the many patients and families who come here for advice.  Your lack of respect for those coming here for compassion and help by refusing to respond to any other comments to date reflects on your lack of empathy to those your entrusted to care for and those that look for some help beyond traditional in person meetings.  To that extent you should be ashamed of yourself.

My second point is your chosen words of FOOLISH AND DANGEROUS. Pretty severe usage of the words in my opinion.  I believe people that wish to hike Mt. Everest, Scuba Dive into Caves and enclosed wrecks, Hang-glide off of cliffs, Hike in areas known to be occupied by grizzly bears without at least bear spray...and on the list goes...may be considered foolish and dangerous.  These terms would be more fitting to the above mentioned situation as opposed to someone choosing to use batteries as intended in an LVAD.  Are their risks?  Of course there are but there are risks with everything that people choose to do.  I respect their right to choose even though I may not agree with it.  But I NEVER have called out someone as a FOOL for choosing to do something they want to do.  Rather I'm much more comfortable knowing they have more than likely been informed of the inherent dangers of some of these activities.  From a statistical standpoint your chances of death from riding in a car is higher than LVAD deaths on a measured basis.  Do you call everyone riding in a car FOOLISH and DANGEROUS.  I think you get my point...

Finally,  I thought long and hard about even responding to your comment as I'm confident your EGO will get in the way and your first response to me and this forum will be to further dig yourself into your position as a means to defend yourself.  If so, you've missed the point .  If you were my health care provider and you made this statement to me you would have been removed from my care immediately as is my right to do so.  Your obvious disdain for patients wishing to exercise their personal rights that don't align with your personal views on care  and being called a FOOL as a result is unacceptable.  I further reiterate that your trolling behavior and lack of helping other posters lends additional credence to my statements.

Lastly,  I'm currently back in the hospital waiting for a new heart.  This has been an arduous road to say the least but my time has finally come.  My transplant listing has been upgraded to Status 2 on UNOS about a month or so ago.  And guess what....it wasn't because I chose to use my batteries 24/7.  It is finally my time....And I'm looking forward to a new heart and even much improved quality of life in the near future.  All thanks to the support, compassion and understanding of my needs by my chosen health care professionals.

Good day to everyone, and for those desiring to receive real comments and support I encourage you to keep posting.  For those of you on this forum that choose to respond to nothing, especially if your a healthcare professional, should re-evaluate why your on here in the first place.  Oh and btw sorry if I messed up my use of there/their...sometimes it's hard to tell!

 

 

 

 

 

 

 

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In reply to by Scott C.

Dave L.

Scott,

Sorry dude, I think you are being way over sensitive. What the NP had to say is the proper and correct way to do things. That's his job, to keep us safe and doing proper procedures. Having said that, I too have also had times where I slept on batteries due to heavy congestion where I couldn't lay in bed and to hook up to house power would cause bathroom issues. I'm on HM3 and my power unit does have a nice long cord. Sleeping with the control unit was a pain, felt like I was getting tangled in the cords.

My wife uses a TV tray next to the bed to change my dressing. I noticed it was basically same height as bed so I tried setting the control unit on it with the tray very close to the bed. No more tangles and could actually sleep on either side comfortably. However, every once in a while, the control unit would slide of the tray and pull at my anchor. I found an old oscillating floor fan with adjustable height. 3/4" PVC fit easily over the pipe so I made a hook device and added a strap to my control unit device bag. Problem solved. Very stable, I can roll back & forth with minimal fuss and easy get free for bathroom duties. Just looking for ways now to improve the concept.

--Dave

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Michael S.

Sorry you took it personally but it is foolish, dangerous and to advise other patients that it might be OK is irresponsible. No ego involved here. 

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Reiss T.

I am 11 plus years out since my Heartmate II implant in 9/20/2010. I have to agree with VAD coordinator Michael S. I never sleep on batteries. Why push your luck? I have always been able to figure out how to wall power at night even when traveling including to Europe. I have never had to deal with a sustained power outage but in the event of one I would have up to eight fully charged batteries on hand. I am a bit hearing impaired and with the batteries under the covers is is very possible that the alarm would not wake me up while the wall unit alarm definitely does. Again, why push your luck if you want to live a while longer?  

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Dick T.

I always plug into AC power at night. When traveling i take an extension cord to make sure i can reach a wall outlet. Being 73 yrs old i also get up a couple times a night to pee.  I keep a small plastic urinal next to the bed which i empty and clean every morning. 

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Randall M.

I don’t travel with my power module but use batteries 24/7.  I sleep with my power module when at home.  My power module cable is long enough to reach the toilet.  The reason I don’t take my power module on travel is that even with giving advance notice to TSA and to airlines or cruise ships I have always run into problems.  Twice I was traveling by Air and was denied keeping my power module and battery charger with batteries in the passenger compartment and forced to have them placed in planeside baggage.  Once On a cruise I was made to step out of the boarding line and within view of the other passengers and wait unti the security dog cleared me.  Also when reboarding after a shore excursion the ship security tried to get me to remove my batteries and controller even after explaining they were attached to me.  I was prevented from boarding until I was cleared by the ship’s Chief of Security after everybody else had boarded.