Life at 9200 rpm's: A week of maintenance

      This was the week that was.  In the spirit of a Japanese proverb:  Fall seven times, stand up eight.  

     LVADs have their share of issues: physical and gear.  No failure.  Still good to go.  In short, I get nose bleeds and this week a portion of my driveline, which carries electric power to the pump, developed a tiny split, probably due to wear.

     The bigger physical issue is that I have a problem with unstoppable nose bleeds.  It appears to stem from my anti-coagulation medicine regimen, which was recently coupled with a baby aspirin a day.  Coumadine or warfarin is the anti-coagulant drug.  It is regulated to keep blood from clotting in the HeartMate II.  

     There is a complicating problem in addition. The pump can cause its owner to develop Von Willebrand's disease.  Named after the doctor who discovered the blood factor, Von Willebrand's interferes with clotting because the platelets are unable to clump together to produce normal clotting.  In LVADs, the decrease in Von Willebrand's factor is an acquired condition. It occurs because of the continuous action of the pump.  No pump, no Von Willebrand's disease.  The disease is inherited and there is none in my family that I'm aware of.

     At 6:30 a.m. Wednesday, as I sat up in bed for a drink of water, my nose began to bleed.  Not a trickle but a gush.  Minor, really.  No one has died of a nosebleed.  Well, after about six and a half hours of pinching and using nose plugs, I finally headed for the ER.  

     As background, I had an ER visit for the same problem in the fall of 2010 about six months after the pump was installed.  The ear, nose and throat specialist on call, packed my nasal cavity with material that looked like small cotton logs.  They were not cotton because within about three days, they disintegrated.  Packing the nose staunched the flow by putting pressure on the capillaries that had ruptured.  

     The side effect of the packing for me was a blinding headache. Go ahead and stuff several sweat socks in your nasal passages and see what happens.  

      This time, the ER doc, who is not a fan of nose packing, having  undergone the procedure himself, cauterized the bleed.  He used chemicals and I was good to go in about an hour.  The bleeding came back briefly later that night but after the doc's coaching, I got it stopped.

     I know that other LVADs have epistaxis, the medical term for the nose bleeding condition.  I pass on here what the doc told me to do.  First, blow your nose to dislodge whatever clot has begun to form.  A clot, he said, can keep the ruptured blood vessel open and bleeding. 

     Next, firmly hold the nose between thumb and forefinger (thumb up) to stop the bleeding.  Wait 20 minutes. Third, do not peek under any circumstances for the full 20 minutes.

     At the end of the full 20, slowly release pressure and see what happens.  If the blood has not clotted, the doc said to repeat the whole procedure another time, with no peeking for the full 20 minutes.  If that doesn't work, head to the ER.

     Turning to the gear issue.  The tiny slit in the percutaneous (goes through the abdominal wall to the outside) lead, caused some stress.  I didn't know what to think when I discovered it, all 3/8 of an inch of it.  

     The perc lead is connected directly to the LVAD.  It runs between the system controller and the LVAD.  I was under the impression that any defect in the drive line meant the LVAD had to be replaced.  Wrong.

     My LVAD coordinator said Thoratec has technicians that can splice any part of the drive line  that is outside the body.  There is also a method to fix the connection between the drive line and the controller.  In this instance, the tiny slit was sealed using stretchy silicon tape.  

     Complete repair in less than five minutes.  It was the roundtrip drive to the University of Minnesota from Fargo that stretched the trip to eight hours.  Nothing fancy about the tape.  It's called
Silicone Rescue Tape manufactured by Harbor Products Inc. and its available at the hardware store. Think I'll lay in a supply for other unforeseen repairs.

     The week produced some stress for us.  But it was not life threatening.  In the words of FDR, When you come to the end of your rope, tie a knot and hang on.  Figuratively, of course.  I was not at the end of my rope.  Adapt and overcome.