I guess after having an LVAD for a almost a year and a half, I’ve become someone that people will ask for advice or information, especially if they are considering an LVAD or have been told they may need one, or have just had one implanted and are looking for guidance on something. I am honored if I can ever be of help as there is no such thing as a “stupid question” with an LVAD. There are still less than 20,000 of us worldwide that even have this device, so we are definitely in a unique group.
Recently, I have been hearing from both new and experienced LVADers, about the emotions, anxieties, and issues a lot of us experience at a time of the day where we have to “Plug In.”
This term refers to that time of the day when an LVADer must choose to switch from being battery powered (mobile and free to move around) to plugging into our wall-powered power base units (a cord that is basically less than 30′ long). I spoke about this LVAD leash in an earlier post. When we came home from the hospital with this equipment we had to do a lot of rearranging in our bedroom to allow me to be able to have the equipment close enough to the bed (we typically plug in before going to sleep). The cord is long enough to allow me to visit the bathroom. It is also long enough for me to reach the threshold of our children’s room, but not long enough to go into their room if they cry out. I have to encourage them to come to me, or have my wife tend to their needs. It also might be barely long enough if I lean a bit to reach a hall pantry where the occasional midnight snack can be found (salt-free of course).
Many people hate this cord. They hate giving up their freedom. It is something that depresses them, or causes them anxiety right at a time they are supposed to be getting ready for bed and settling down.
I have come to terms with this cord and actually have a different viewpoint to share, in hopes it can help these others over this issue of plugging in.
I personally have come to even look forward to this time of the evening . Why you ask? I look forward to this time of the day for several reasons. I know that if I am plugged in, then everyone is home that is supposed to be, and if not in their beds yet, they are safely in the house. I know that the doors are locked and the house has been secured for the evening, I know that all of the medications I will need as well as the water to take them with is ready. II know that I have checked the weather alerts to make sure that there is no impending weather threat that would threaten the power supply (meaning I would have to jump back on batteries). Basically, it means that all is as it should be in that small area of control I can control in my life, and it is easier for me to rest. Hopefully this alternate viewpoint helps you look at the LVAD leash in a new light, and can solve some of the issues around plugging in.
Now if I can only figure out how to solve LVADinsomnia!