My Life at 9200 rpm's: What they carry

Not to put too fine a point on it, but my life was essentially over three years ago.  I was 65 and had end stage congestive heart failure.  

That means things were not going to get better but could only get worse. Then the savvy doctors working with me had a great notion: a left ventricular assist device might help.  And it did.  With it came new skills and responsibilities.

When I was implanted with a HeartMate II April 2, 2010, I was taught how to care for and carry my equipment.  And reminded never to leave home without my backup equipment. It could save your life, I was told.  It reminded me of boot camp mantra never be separated from your rifle.  You can't do your job without your gear. Some of the gear, the guts, is inside you, namely the LVAD.

But the other equipment is mostly visible: a battery under each arm with a wire protruding from one end, a fanny pack worn at belt level containing the computer that runs the show, and the battery wires that run to the computer.  Finally, the signature black equipment bag that holds spare batteries and such.

The gear isn't very heavy but it is a tad cumbersome because it's with you all the time.

The controller, the brains of the LVAD, weighs a couple of pounds. In addition, my batteries, that clip into battery cases, which in turn are attached by cables to the controller, weigh a couple of pounds each. 

The controller is your constant companion when you have an LVAD.  I don't remove the controller from my waist to sleep, but loosen the belt.  Instead of batteries, the sleep regimen involves an 18 foot long tether with connections to a power module plugged into an outlet. The tether fortunately reaches the bathroom.

The HeartMate II system depends on redundancy. The controller actually contains its own backup computer. But each LVAD owner carries a backup controller, two batteries with their clip connections, and miscellaneous spare medicine. Everything fits into a "go bag," a black camera-type bag 8 by 7 by 8 inches.  

Thoratec, maker of the controller and all HeartMate II equipment, has just received federal approval to begin issuing a "pocket controller," which is one third the size of mine and weighs only a few ounces. Newly implanted LVADs will have the "pocket controller."  Besides the reduced size and consequent weight reduction there are other positives about the "pocket controller." 

For example, all three leads on the pocket controller attach on one side, making it more carry friendly.  It can be slipped into a pants pocket with ease.

The "pocket controller" also has a display screen, which gives instructions on what to do in response to an audible alarm.

But the best part is that the p-c has a battery that will power the LVAD for up to 30 minutes, in case power from batteries or the plug in power module is lost.

By contrast, the current controller is football shaped, about nine inches long, four inches wide and about two inches thick. It is not easy to slip it into a pocket but it does have a belt clip on the back.  I find that clip useless. The leads on the current controller make it cumbersome to carry.  One cable connects to each end of the  current controller.  The batteries and connections power the controller and in turn the LVAD.

The p-c is a step in the direction of a fully implantable pump with power source inside the body.  But that's another story.

The point of this post is to alert other LVADs and readers to the availability of something that would make an LVAD's life a little more comfortable.

These devices are expensive and each current LVAD needs two p-c's to be prepared.  No word yet from the University of Minnesota LVAD team about when or whether current LVAD owners can expect to swap current controllers for pocket controllers.

Hope is a good thing.  But the reality is that my LVAD, serial number 8358, and its accessories are working as designed.  At least I'm here to talk about it and that makes all the difference.