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Thursday, May 23, 2013

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.



  




Thursday, May 16, 2013

My Life at 9200 rpm's: Third call for a donor heart but alas no hat trick

Waiting on an organ transplant list has its ups and downs. Nothing new about that. My comrades and I joked in the military about hurrying up to wait. It was true more often than not.  But if you missed a troop movement or your ship sailed without you, the potential for a court martial stared back at you.

So far I have remained in readiness as a candidate on the heart transplant waiting list at the University of Minnesota since Hallowe'en 2011or about 18 months.  Since the number of donor hearts has been shrinking slightly each year, the waiting time is necessarily longer.

But still, I keep my cell phone charged and at the ready in case "the call" comes.  So far, I've had three calls, but none resulted in a transplant.  I'm calling it a reverse hat trick.  A hat trick is three scores in a sporting event like ice hockey by one player in one game.  For those who remember Gordie Howe, "Mr. Hockey," of the Detroit Red Wings, his version of a hat trick was to score, get an assist, and get into a fight in the same game. But I digress.

The first time I got "the call," I was told to stand down within 20 minutes.  Twenty minutes is enough time to upset anyone's applecart.  That time I did not get airborne.  The plan is to be flown by air ambulance from Fargo to Minneapolis.

The next time I got "the call" I was in Detroit Lakes, MN, about 50 miles east of Fargo. It was also a dry run. The weather was snowy, foggy, and winter like. DL was pre-approved as a launch point because it is closer to Minneapolis. My wife and I met the air ambulance at the Detroit Lakes Municipal Airport, watched the landing lights illuminate based on a radio transmission from the aircraft, and were whisked to the University of Minnesota Medical Center at Fairview.

I was fully prepped for surgery, which means ingestion of an array of medications including anti-rejection, immune system suppressants and others.  About 20 different, doctors and medical personnel talked with me about the "procedure" during the three hours I spent in "pre-op."

When my appointed time to meet with the transplant surgical team arrived, an LVAD coordinator told me the transplant investigative team called off the operation.  Better to find as suitable a donor heart as possible before hand than to risk problems after transplant,  I was told.  I agree.

Trying to fix something after installation can result in a whole set of problems that no one could have anticipated.  So there I was, along with my faithful wing woman, at the brink of the transplant operation when we were told to stand down, get dressed, and leave the facility.  

We repaired to a nearby hotel for the night and returned to Fargo by car the next day.

The third time I got "the call" was last week.  It came about supper time and the call was from my cardiologist.  After talking about the donor heart, which was described as "strong," I agreed to accept it.

Within about 30 minutes, the cardiologist called back and told me to stand down.  The investigative cardiology transplant team examined the donor heart in person and found that it would not be suitable for me after all.

So I've been through a "reverse hat trick." No heart but my faith and hope are strong.  Every day I am thankful that my LVAD, a HeartMate II, allows me to wait for a suitable donor heart.