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.


     
      

Life at 9200 rpm's: Waiting and Living

     What does an LVAD do while waiting for a heart?  I can't answer for anyone but me.  I'm enjoying the fall weather in Fargo and at Detroit Lakes.  

     Today I helped build and load a firewood rack with about a cord of wood.  The house fireplace is gas operated, but we have a chiminea that seems constantly in use.  A chiminea is an outdoor fireplace made of earthenware shaped like an upside-down fat light bulb.  It sits on a wrought iron stand and the narrow part is the chimney.

     The dogs, our four and a visiting fifth, romp in two feet of oak leaves.  Their coats smell slightly of wood smoke.

     It is overcast this afternoon and the lake is flat.  A few late season muskie fishermen ply the waters several hundred yards off shore.  I've heard that a few monster fish have been caught, photographed, and released this year. There a size limits for keeping these fresh water sharks.  

     Mounting them using a taxidermist has become prohibitively expensive.  The preferred method is to use photos to recreate a plastic resin model that replicates the fish.  That way someone can catch Mr. Muskie again, if he knows what he's doing.

     Frank Vacek, a Canadian lodge owner and guide, took a crew of us out on Lake of the Woods from Sioux Narrows, Ontario, one June in the early 70's.  Our boats all had 15 horse outboards on them.  

     As we fished along trying for walleyed pike, Frank caught sight of a muskie closely following the propeller of one of our boats.  He called out to keep the boat steady until Frank signalled to cut the engine.  It took less than a minute for all this to happen.

     Frank cast a muskie lure that must have been 10 inches long between the boat's propeller and the following fish.  He timed the cast well and called out to cut the motor.  At that point, Frank cranked the muskie lure away from the stopped boat propeller and enticed the muskie to follow.  Despite his skill, Frank couldn't tempt the big fellow to strike but the whole spectacle was worth it.

     Later, back at the lodge, Frank said he once had a muskie attack an outboard propeller.  The prop had teeth marks on it but the engine won the battle.

    My HeartMate II gives me the chance to be with family and friends.  It is the lifeline that allows me and other LVADs to wait and live.

     I read that the International Society for Heart & Lung Transplantation has data that show that about 60 percent of heart transplant recipients age 70 and over live at least six years from the time of transplantation.  About 80 percent of patients getting new hearts because of damage caused by coronary disease survive at least six years.

    The same data show that about 70 percent of LVADS survive about the same length of time after receiving a new heart.  The data involve transplants between 2002 and 2009.

     Research has shown that being on a waiting list for a heart transplant with an LVAD, has reduced the mortality rate.  My heart surgeon at the University of Minnesota in Minneapolis, Dr. Ranjit John, has been quoted as saying that mortality has been reduced for LVADs into the single digits.

    LVADs account for more people than heart transplants.In the United States about 3,000 ventricular assist devices are implanted yearly compared to about 2,500 heart transplants.  The transplant rate has not increased since 1994.


     Having an LVAD can keep a wait listed transplant candidate alive for several years.  That fact was not always the case.

     Fewer hearts are available for donation because car air bags and the use of helmets by those engaged in high risk sports have reduced the number of fatal head injuries in young, healthy men--the most common source of donor hearts.

     I am alive today because I got an LVAD.  It has been reported that as many as a third of those receiving heart transplants have a similar mechanical circulatory assist device.  What the LVAD has done for me is to underwrite my exercise and conditioning to be better prepared for a transplant, if one occurs. 

     My HeartMate II LVAD manufactured by Thoratec Inc. of California cost about $80,000.  Installation is extra.  I had my chest opened three times in 11 days to implant the pump and stop bleeding.

     A Duke University study on the cost effectiveness of LVADs cost $360,407 over five years.  A study of treatment to that former Vice President Cheney received showed the yearly cost was $167,208 for every year of life saved. 

    How does anyone assess the cost effectiveness of such treatment?  One cost effectiveness figure showed that $50,000 was acceptable with a range up to $100,000 per year of life. A European study in 2011 showed a cost of $414,275 per year of life saved.

     At 68, I'm three years younger than Cheney.  My overall health is excellent.  My LVAD has forestalled a life count down as the Society for Heart & Lung Transplantation suggests.

     I am grateful for the opportunity to be living and waitng.

     

     

    

My life at 9200 rpm's: anti-coagulation drugs are no joke

      I returned to Fargo from my LVAD checkup in Minneapolis Monday only to trip on the back steps and hit my head on a metal chair.  No big deal, I thought.  It hurt but it wasn't a powerful  blow.

    Enter warfarin/coumadin, which most LVADs take as an anti-coagulant agent to keep the HeartMate II pumping smoothly and clot free.

    To be safe, I went to the ER and the doctor, who is LVAD savvy, ordered CAT scans of my head and neck.  The scans showed no brain bleeding or cervical spinal damage.

   I now know first hand what a goose egg looks like as my forehead swelled and protruded.  A day later gravity moved the bruising from the goose egg to my right eye and face.  The next day (Wednesday) my right eye swelled shut from the accumulation of coagulated blood.

     My eye doctor found no muscle damage or other damage to the eye itself. Good news.  I return today for a followup exam.

     This morning the bruising had spread to my left eye and face.  With Halloween on the way, I don't need to look for a mask.

     I would include a photo but frankly I don't recognize myself.  More importantly, I wouldn't want to deter one potential LVAD recipient from getting a pump.  

     The anti-coagulation regimen is necessary for me to survive.  Injuries happen.  I'm using hand railings on all stairs.  As the London Underground announcement reminds riders when the doors are about to close:  Mind the gap.  That goes double for LVAD warriors.

My Life at 9200 rpm's: LVAD/Heart Transplant Support Group Sitrep

     Once a month about 20 people meet at Sanford Clinic in Fargo to support each other as LVADs and heart transplant recipients.  That statement is quite sterile for our earthy group. 

     We are brothers and sisters based on our shared experience. Having an LVAD has its challenges. We talk about our common experiences, sharing our confidence and concern for each other. We can trust the information we exchange.  That's what support groups do.

   About 10 of us have LVADs, all HeartMate II's; three have received hearts, and the rest are caregivers or those with a connection to the group.  

     One of the questions we aired with two Sanford staff that attended  was aimed at ensuring LVADs have a better chance of survival during a medical emergency requiring action locally in Fargo.  To their credit, they took notes.  I'm confident something positive will come of the discussion.

     For me, the bottom line is that Sanford does not have even one pair of the specialized, 14 volt lithium ion batteries that all LVADs use to power their pumps during waking hours.  The sense of the group was that the situation should be assessed by the powers that be and hopefully rectified. Stay tuned.

     Having a pair of batteries would mean acquiring a charging device.  The batteries come in boxes of four with two boxes of batteries, eight in all, for each LVAD. 

    Sanford has undertaken to provide care for 10 or 12 LVADs locally so that we don't all have to travel to the University of Minnesota for every cardiology appointment.  The U of MN agrees with the approach.  Fargo is 3 1/2 hours from Minneapolis.

     Co-operative care, called Shared Care, is a great idea.  Right now I see a medical professional concerning my LVAD status every month and a half: alternating Fargo and Minneapolis.   The U of MN implants LVADs.  Sanford, I'm told, hopes to be an LVAD center in the next few years.

    The problem is that full support of us as LVADs would mean that all of the equipment we routinely use should be available in the ER.  The expense of having functioning battery sets, the battery charger, a power module, display module likely would cost umpteen thousands of dollars.  

     Nothing Thoratec, Inc., manufactures is inexpensive.  The equipment is unique to the HeartMate II.  You cannot simply get replacement batteries at the local battery store. The sophisticated battery charger is specifically for to HeartMate II batteries.

   The LVAD itself is in the neighborhood of $75,000.  Installation, of course, is extra.  Not a cheap undertaking.  For all the gear that goes along with keeping LVADs functioning, the price tag is off the charts.  Just thinking about it makes me doubly aware of how fortunate I am and we LVADs all are.

     Despite its cost our treatment to date to relieve congestive heart failure has kept us LVADs alive and thriving.  Worldwide, some 10,000 HeartMate II's have been implanted over the last five years. The dollar investment is vast.  What's the price of life? 

   

     

     

My Life at 9200 rpm's: Heart Felt Fall Reflections, LVADs, Transplants, and Dick Cheney

     Fall brings shorter days and the area around Fargo shifts to cold weather mode. A wag once said North Dakota has two seasons: winter and road construction. 

    It snowed and rained this week just as several yards of dirt were about to be applied to the side yard.  We've had a dry year so far and thought now would be the time to address the low lying yard that attracts any available runoff water from every direction. The weather didn't exactly cooperate.

     The area of our yard turns into a swamp because of the grade. Swamp conditions and several canines do not mix well when they return to the house.  They are cute but clueless about paw prints and tracking.

     The wind borne snow, which didn't accumulate, shook off leaves from the birch, elm, and so-called seedless cottonwoods and  loosened apples from our lone apple tree on the north side of the house.  Overnight temperatures are at freezing and the daytime temps are lucky to be 10 degrees warmer.  Time to start thinking about the snowblower and gathering outdoor weather gear.

    The fill for the yard will arrive this week. Apple pie sounds good.  The snowblower won't start and needs an oil change.  I located my parka, mittens, and boots.  I'm good to go thanks to my LVAD #8358.

     Among the reflective interludes I had was one of former Vice President Dick Cheney, who had a HeartMate II LVAD for more than 20 months before he received a new heart at age 71. His story is inspiring to me. 

     He had many heart related events during his adult life, starting at age 37 with his first heart attack in 1978. He had two other heart attacks in the 1980's. and underwent bypass surgery, angioplasty, and had stents installed.  In fact, Cheney's heart treatments parallel most of the major pharmaceutical and medical procedure advancements that have developed since 1984, when he suffered his first heart attack.

     His heart condition caused him significant pause when he became a vice presidential candidate. Cheney determined that he not want his heart condition to cause a Constitutional crisis or at least a disruption in the event he was totally disabled.  

     The 25th Amendment to the Constitution,  on presidential succession in case the chief becomes incapacitated provides for the transfer of duties for the President but not what to do about a vice president who is unable to perform the duties of his office.  

     Cheney wrote in his 2011 memoir that when he joined the ticket with George W. Bush he planned to write a letter of resignation and keep it on hand where an aide could access it, if Cheney became incapacitated.  Fortunately, his heart condition never incapacitated him to the point the letter of resignation had to be submitted to the Secretary of State.

     I learned for the first time that when Cheney's LVAD was implanted, that he was unconscious for several weeks after the surgery.  His surgeon  told a New York Times reporter, who himself is a physician, that Cheney's 20 plus months with an LVAD was not free of events that were not otherwise specified.

     After all that travail, Cheney's is an amazing story. At 71, he is blazing a trail for all of us older persons awaiting the gift of a new heart.
    
     I am extremely fortunate that the University of Minnesota policy permits me at age 68 to be wait listed for a heart transplant. My part of the bargain is to stay in good overall health and maintain myself with the LVAD since congestive heart failure is a permanent irreversible condition.  

     None of my other organ systems have been compromised, I'm told, and so good health has allowed the U of MN heart transplant team's thorough evaluation of me as a candidate for transplant to give me the thumbs up.

     For patients 65 or older, it has been reported that 243 patients nationwide received new hearts in 2006, while in 2011 there were 332 heart transplants. The data comes from the national Organ Procurement and Transplant Network.  There is no data available for the over 70 group like Cheney.  

     Meanwhile, without the life giving LVAD that has stood me well these past many months, there would be no fall reflections or any other reflections for that matter.  Besides, the apple pie sounds terrific.   
     

My Life at 9200 rpm's: Don't look back. Something might be gaining on you

     Satchel Paige said it.  I believe it.  I have tried to practice it and have found that it works.  He pitched baseball for a living first in the Negro leagues and later as a major league pitcher.  Joe DiMaggio once said that Paige was the best pitcher he ever faced.

      Paige's pitching philosophy was: Throw the ball wherever you want. Home plate don't move...Just keep the ball away from the wide part of the bat.

     To those who said he threw illegal pitches, he said "I never threw an illegal pitch.  The trouble is, once in a while I toss one that's never been seen by this generation."

    The over-the-shoulder second guessing we all do from time to time can lead to an exaggerated focus on stuff you cannot do anything about.  So, if you cannot do anything about it, why get into a snit over it?   Satchel Paige's answer was not to look back because something might be lurking. Something he could do nothing about except worry.  Instead, look forward. Live in the moment.

     Easier said than done, you say. I agree but keep on keeping on.

     Take the LVAD, a mechanical medical marvel. Is it a disability? I don't think of having a mechanical circulatory assist device as a disability. That would be seeing the glass as half empty. 

     Having an LVAD is an opportunity and a second chance at life.  There are those who hide their wires, batteries, and gear.  I'm not one of them.

     I flaunt mine to raise awareness of LVADs. My flaunting is not a show of ostentation. I do it because flaunting attracts questions.  Questions raise issues.  Questions require answers. Together they raise awareness.

     I wear spandex and nylon shirt with holsters built-in. My wires are visible and obvious.  Questions arise. The bulges of the batteries in the holsters provoke more questions.

     "What are you packing in those holsters?" I'm commonly asked, ".45s?"

     "No," I respond, "I have a heart pump that operates on two 14-volt, lithium ion batteries.  I carry the batteries in an undercover police shirt that has holster-pockets under my arms that hold them snugly just like .45s."  

     Usually inquisitive people I encounter get a chuckle when I draw one of the batteries, which weigh over a pound and measure 4x9x1 inches. It is as big as a handgun. I get an inkling of recognition when I mention Vice President Chaney's LVAD.

     I also carry a spare pair of fully charged batteries and a spare computer controller in what looks like a camera bag.  Fortunately the bag has a show-and-tell luggage tag displaying the arrangement of the components and pump, which makes a good talking device.  

     The luggage tag from the maker, Thoratec Inc., shows the placement of the pump, wires, and batteries in color.  Most people have not heard of LVADs and the biggest surprise is that the pump is permanently implanted inside me. 

     "No," I say, "I cannot take it out at night or ever."

     From my perspective, there is a significant information gap in the general population's awareness of congestive heart failure, its impact on tens of thousands of lives, and the benefits of LVADs.

     Don't misunderstand.  With all that everyone has to deal with nowadays and the pace of life in general, we are all deficient in our awareness of many things, including me.   

     When I was life flighted to Mayo Clinic, my first exposure to an LVAD was when I was shown the device by an LVAD coordinator. Much to her chagrin, I said it looked like a piece of plumbing hardware that might have come out of a toilet. 

     Clearly, I don't have the answers and don't even know many of the questions.  

     But the essential reason I'm carrying on in this forum is to try to raise awareness for CHF sufferers.  I want to broadcast the message, "You don't have to suffer as you have."  

     LVADs are not a panacea and won't solve all CHF problems but it is an appropriate and effective method of reclaiming your life.

     So I'm a fan of LVADs, particularly #8358, the serial number of my left ventricular assist device, manufactured by Thoratec Inc. of Pleasanton, California. You might say I'm a lifelong fan.  If I'm not fortunate to receive the gift of a new heart, my LVAD should keep me in good stead.

     I learned recently that there is a group called LVAD Warriors that offer support and respect for LVADs, their "wingmen" and families.  They have a site on Facebook. 

     One of the things the group does to raise LVAD awareness is to distribute colorful bracelets bearing the legend "LVAD Warrior." 

     My hunch is that the bracelets draw questions.  I'll happily wear one.

     

My Life at 9200 rpm's: Adapt and overcome, 30 months and counting

     Another milestone for this LVAD.  Thirty months and counting. As I've said before, I received my HeartMate II April 2, 2010. 

     My congestive heart failure, like so many others who develop the condition/disease, slowed my life to an unsteady crawl, fitful and uncertain.  Breathing was the most serious issue. If you cannot breathe, you cannot renew the oxygen in your blood stream. The outcome could be grim.  The HeartMate II made all the difference.

     When I consider that not everyone makes it out of the hospital after the lengthy implant surgery of this miniature mechanical blood circulation device, I know I am twice blessed.  I was in the local hospital in Fargo for a week and at St. Marys Hospital at Mayo Clinic for 47 days. I made it out of the hospital and haven't looked back.

     For an LVAD, getting out of the hospital is a milestone.  Exercise and being active have been a kind of Heartbreak Ridge continuing odyssey for me.  

     By no means am I comparing my experience with the brave souls of the U.S. Army's 2nd Infantry Division. About 3,500 Americans were killed in the actual Battle of Heartbreak Ridge. Some 25,000 North Koreans were killed as well.  The battles were intense: bombs, artillery shelling, tanks, infantry, airborne troops, rifles, grenades and hand to hand combat with knives, feet, and fists.  

     Until the U.S. overall field commander was replaced at the end of September, the fiasco raged as the 2nd Infantry Division was repulsed and slaughtered.  

     New battle plans were developed about the first of October, employing engineers building roads where there had been cart tracks.  Tanks could use the roads but not the cart tracks.  Guts along with tanks and artillery changed the mix.

     My point is that the recovery road has been slow and not always smooth or comfortable. There are no guarantees for LVADs or any of us.  In the bigger picture, there is a certain end for all of us.

     Each day is a good day. But count on nothing. Take nothing for granted. As the fictional Heartbreak Ridge movie character Gunny Highway said,  to his platoon of initially woebegone Marines: adapt and overcome.  It became a mantra for Highway's men.  

     Clearly, you cannot plan for every eventuality. The best, most carefully conceived battle plan always seems to go to hell once the first shot is fired.  Adapt and overcome.  It is all about attitude.

     Unlike the movie references, the real Battle of Heartbreak Ridge was a Korean war encounter that lasted a month in September-October, 1951.  American and French Army forces struggled against overwhelming odds and well entrenched North Korean Peoples Army soldiers.  

     It was not U.S. Marines in the Battle of Heartbreak Ridge like the story line said in the movie starring Clint Eastwood as Marine Gunnery Sergeant Thomas Highway.  In the movie, the back story was that Eastwood/Highway was awarded the Congressional Medal of Honor for heroism allegedly in the Battle of Heartbreak Ridge. There was an Army private whose heroics won the MOA posthumously.  Eventually, in actuality South Korean troops took and kept the ridge.  The men and materiel lost were undeniably costly.

     The first year for a new LVAD has been shown to have a survival rate of about 58 per cent, according to the manufacturer's clinical trial outcome data.  For the second year the survival rate jumps ten points.  

     Those are recognizable milestones.  After that LVADs are on their own.  The territory is uncharted. Some LVAD brothers and sisters have more time on the pump than I have. They are the pioneers who give me encouragement.

     I'm now at two years and six months survival mark, feel good, have a reasonable quality of life. I have a heart pump that eases congestive heart failure.  It is not a cure. So living 30 months downrange from LVAD implant surgery is defying the odds. You learn to face each challenge with an adapt and overcome attitude.  

     It is not an attitude that comes naturally.  You have to work at it. But the reward may be another day of living on this mortal coil.  There are no guarantees for LVADs or any of us.