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Saturday, June 30, 2012

My LVAD only hurts when I laugh (not)

     No, it doesn't hurt.  It never did.  You can hear a persistent whir and whoosh when you lay on your left side. It is a little disconcerting when you first hear it and the pump sound will likely freak out your LVAD partner.  Just a new body sound.  You know as you hear it that the impeller or rotor, the one moving part in the pump, is working.  It is the sound of life.   I'm grateful for the sound.  

     My HeartMate II is a continuous, axial flow, non-pulsatile device.  That means I, and other LVADs, have minimal pulse. The one moving part is a rotor, which operates on the Archimedes screw principle. The early Romans and Greeks used Archimedes type screws to raise water from one level to another.  

     The HeartMate II has no valves to break. My LVAD moves at a top speed of 9,200 rpms (hence, the working title of t his episodic narrative). To me the whoosh is a reassuring sound because it means my HeartMate II is functioning as designed.  Five plus liters of blood are coursing through me every minute of every day.  

     The LVAD itself is machined from a block of titanium stock.  Quality control is rigid.  I was told that only about 10 of 30 pumps pass the rigorous inspection. The others are not useable. Thoratec maintains that no HeartMate II has ever failed.  That doesn't mean those implanted cannot have other problems.

     Thoratec's engineers also found a way to coat the inner surfaces of the LVAD with titanium spheres that prevent continuously flowing blood from catching on the surfaces and coagulating.  Such coagulation can lead to a clot.  And clots in the pump can cause damage to one's circulatory system, including death, and when expelled from the pump, clots can cause strokes.  

     Other pump designers have had clotting problems.  HeartMate II was approved for both destination therapy (LVAD for life) and transition therapy, often called bridge to transplant therapy (those who are listed for a transplant) by the Food and Drug Administration in early 2010. It remains a leader in its field.  

     Most LVAD recipients follow a monitored anti-coagulation regimen by taking Coumadin or warfarin.  The medication helps ensure that clots don't occur because clotting is retarded by the drug. Slower coagulation means safe passage for blood through the pump.  I'm told that some LVADs also take aspirin as part of their anticoagulant regimen.  

     With the increased risk of bleeding while on anti-coagulants, I avoid the potential for falling down.  Thus, no ladders, no bicycle riding, extreme caution on ice or unlevel ground, no camel riding (one LVAD I know rode a camel without injury), no lifting more than 50 pounds, no contact sports.  I don't use a chain saw and do not start any device with a pull cord.  One friend ruptured his diaphragm starting a chain saw. Common sense should prevail.

     I take an array of meds to help regulate blood pressure, blood clotting rate, cholesterol, water retention, heart rate and associated issues.  You get used to taking the meds on a regular schedule.  Some use their cell phone's alarm clock as a reminder device.

     



     




LVAD: an engineering and medical marvel and a life preserver (not Coast Guard approved)

     I have been asked, "How do you live with a mechanical heart pump"?  I happen to have a HeartMate II, a left ventricular assist device?  It's easy to live with a mechanical heart pump, I say, in fact living with an LVAD is a no-brainer. You take one day at a time.  All you have is "now".  Adapt and keep your wits about you is the best I can do by way of advice to someone with a decision to make about whether to have an LVAD implanted.  You'll have to make some changes in ordinary life routines but an LVAD requires nothing that compromises the quality of life that you'll experience.

     For me, the alternative to living with a HeartMate II is obvious for anyone with end stage heart failure. It is the "end stage" that needs emphasis. Without the LVAD, I would have been toe tagged a couple of years ago.  It is the reality of CHF and not said for dramatic effect. 

     There are more than 5.5 million people in this country suffering from congestive heart failure.  Some don't know it.  Some fight it: oh I'm just not feeling well, have no energy and the like.  I'll bet my last shekel that most readers do not know what their ejection fraction number is let alone what an ejection fraction is.  Right?

     I first heard the term as a patient with pneumonia and deteriorating heart functioning the last week of March, 2010.
My ejection fraction was less than 10 when the MeritCare Hospital, now Sanford, cardiologists in Fargo said there was nothing further they could do for me in late March, 2010.  A normal ejection fraction is in the mid 60s.  It is a measure, admittedly an educated guess, of the flow capacity of the main pumping portion of the human heart, the left ventricle.  

     The EF is determined based on an echo cardiogram of the heart, a sonogram essentially.  The radiologist and cardiologist review the images and determine the ejection fraction.  That is why I called it an educated guess.  It is not a precise measurement but a good estimate of capacity.  But with an EF estimated at 10 and with nothing further that could be accomplished with medications, I was left with few options.  

     Essentially, I needed a new heart or a mechanical circulatory support device, an LVAD.  Fortunately, Dr. Lyle Joyce, my surgeon at St. Marys Hospital at Mayo Clinic installed LVAD  #8358 in me to assist what native heart function remained.  Now, I'm good to go.  I'm one of 10,000 HeartMate II recipients.  My training with an LVAD has been "on the job." The pump came with a Patient Handbook but there are issues of interpretation.  My LVAD compatriots and I are pioneers in the field.  We don't know all the answers; we don't know all the questions.

     When questions arise about my LVAD and its functioning, my main resource is my LVAD coordinator. He is an experienced Registered Nurse with considerable training in mechanical circulatory support devices and a lot of practical experience.  The U of MN has some 100 LVAD patients under active monitoring.  It   currently has six LVAD coordinators. From my perspective, the coordinators run a seamless operation. I feel comfortable with the whole crew.  They answer questions day and night.  Significant questions and insignificant questions. One doesn't know the questions are in either category when they arise.  

     Some of the questions that need answers asap, and I can call my LVAD Coordinator and get expert help.  If I'm in doubt about whether the question is inane or silly, I call my LVAD coordinator anyway. They have seen it or heard about it. They encourage questions and airing concerns. Truly they are lifelines.  Mine is at the University of Minnesota in Minneapolis, 240 miles southeast of Fargo.  If nothing else, they all have a calmative effect on me, they don't get rattled (even at 3 a.m.), and they almost always have an answer or a solution straight away. Or I get a call quickly with the information.

     I have a designated coordinator at the U of MN just like I had at Mayo but have often talked to the one on duty through the hospital operator paging system.  Disembodied voices on the phone can still solve problems.  They also act as a team, running issues and problems through the paces. Two, four, or six heads usually have a solution.

    For example, on a recent clinic checkup at the U of MN, my coordinator was away getting continuing education.  The alternate coordinator gave me and my wife a refresher on how to change out or swap the system controller, the computer that is the brains behind the LVAD's operation.  I wear the system controller on my waist 24/7.  (If you are interested in what these components look like, check my compatriots' blogs FromTheBottomOfMyLVAD at blogspot.com, or lvad-inc, or the Thoratec Corp. website at www.thoratec.com .  (If, as, and when I learn how to add images I may do some of what Josh Morris and Chris Wade (new heart recipient, hurrah) have done with images on their blogsites).

     The LVAD I sport is an engineering and medical marvel, in my estimation and likely in the estimation of all my LVAD compatriots.  We would have no life without it.  But I digress, which is a blogger's privilege.

     At any rate, during my recent checkup, I sat quietly in the assigned clinic room at the U of MN, while the LVAD coordinator, my wife and LVAD Partner, and I took turns swapping the belt mounted controller for the spare or backup controller and batteries I carry with me just in case they are needed.  I paid close attention to the white drive line being disconnected and noted my body's reaction.  I think my blood pressure dropped for a second or two before the drive line was reconnected.  It happened again while Dolly switched controllers and when I did it.  There was no emergency. This was an exercise

   Since the system controller is electronic and despite rigorous quality control at manufacturing site, system controllers can act up and/or fail.  The idea is to create redundancy in the equipment as far as possible.  Hence LVADs carry spare parts: controller, batteries, battery clips, and written instructions in simple language about how to make the change. I also carry an alarm card chart in my go bag.

     It can be noisy, unless one silences the alarms, because of the many audible alarms the system controller emits when something needs attention.  Changing the controller can be nerve wracking with all the noise so the swap is done under battlefield conditions--ignore the racket and continue with the mission.  Or learn how to disable the alarms (they come back on in two minutes, so they are not silenced permanently).

     If the controller fails, for example, and a change over to the backup controller is not accomplished rapidly, not too much time can elapse before blood begins to coagulate in or around the LVAD itself.  I've never experienced this and I know of no one who has but the rule of thumb is get 'er done.  If it cannot be accomplished in short order say five minutes. Don't do it.  Call for help and hope for the best because restarting the pump can cause a potentially fatal thrombosis (read clotting or localized coagulation). Why tempt fate, right? 

     So refresher training on swapping the system controller is necessary and could be life saving.  Mine in particular.

      

Friday, June 29, 2012

LVAD Partners, Caregivers, Heroes

      In early April, two years ago, as I lay in St. Marys Hospital of Mayo Clinic in Rochester, MN, with a newly minted LVAD, I had no notion of exactly or even approximately what was happening.  Drugs will do that to you. 

      The wheezing was gone as was the shortness of breath.  I wasn't ready for a workout on the dreadmill. I'd get to that in due time.  I didn't know I couldn't walk.  But I was alive and didn't need to pinch myself to ensure I wasn't dreaming.

      I knew that implanting the tiny pump was open heart surgery.  I knew that but had no concept of the scope of the operation or its aftermath.   I did not know that I was bleeding near the LVAD and would have to be opened up twice more in the next 10 days for a tuneup.  The bleeding was stopped.  Third time is a charm, right?

     However, the Mayo team also had to deal with blood that seeped into my lung cavity. That was resolved without so-called "chest cracking" (a sternotomy, the term for the inline, vertical incision made along the sternum) using instruments that entered the plural cavity through my rib cage.

      My constant companion was at my side.  Call her my wife, my LVAD partner, my caregiver or what you will. She is the hero of this story.  For the patient, the role is essentially passive.  It was up to the surgeons, nurses, and others on the staff to install the heart assist device, the HeartMate II, and keep me alive. For the LVAD partner, the roller coaster of emotions is unfathomable if your not in her shoes.

     Open heart surgery is no walk in the park.  Who knew?  Not me.  I was so far out of it that I do not remember signing consent forms for each of the procedures.  My signature was shaky and crooked.  I would have consented to just about anything.

      For the LVAD partner, I can only imagine the level of anxiety propelled by the unknown.  Life or death hung in the balance.  I was out of it. Watching and waiting is mind numbing.  Nothing prepares one for the role of LVAD partner, particularly since I had a short decision making window.  It was less than a week between being life flighted to Rochester from Fargo and the implant operation.  Some recipients have weeks or months to make a decision.  The pump looked to me like something for the toilet plumbing but if it worked, I was ready.  Let's do it.

     It was a hell of a ride but I'm here to testify to the positive result.  Another wag said that every day above ground is worth it. The alternative is always there. 

     During the first two weeks after implant, I became vaguely aware of the medical team's morning rounds.  They seemed to appear from somewhere stage right like a Greek chorus, 10 or 12 of them, huddled in discussion outside my room.  Then two white coated team members came in and briefed me and Dolly on what was happening to me, my progress, if any, and the next step they planned to take.  Then the doctors retreated and the Greek chorus shuffled out of sight stage left.

     My LVAD partner, my wife Dolly, was there throughout all the days.  She was bedside taking notes on what the doctors said. She read to me and was there for me. She had a notebook to write thoughts and questions for the medical team.  I had no idea of what she was going through.  I've heard only some of it.  I know she's pleased with the result.

     Gradually in the hospital, I became aware that I was "tethered" to a machine by a cable.  It was the Power Module. Essentially the Power Module transforms regular current to the low level required to operate the LVAD.  Batteries by day; PM by night.

     At first I was unaware of the required bandage changing on the percutaneous (through the skin) lead site. The percutaneous lead or drive line required a dressing change using sterile procedures once a day.  The site was an open wound that eventually healed around the wire.  The wire carried power to the HeartMate II through a small computer system controller. The system controller has two other wires that connect to the batteries that power the pump.

     Before Dolly and I left the hospital six weeks later, we had learned how to care for the drive line site.  We learned so much more, including for me, how to walk and use stairs.

     I have a greater appreciation for the mantra attributed to the Navy commandos, the SEALs, of whom I have only a passing knowledge as a retired Navy captain. Their mantra:  the only easy day is yesterday.

     Experience shows that heroes often don't have a clue about what they have done and are doing.  They say they were just doing their jobs.  My LVAD partner is my personal hero.  I love you Dolly.





     



     



     







Thursday, June 28, 2012

LVAD owner with piscatorial friend



       LVAD owners can catch fish. While no longer waterproof, using a stable platform like my folding boat with a small outboard in calm water, guarantees access. 

      The problem remains that you have to hook up with a critter to catch one.  Hookups are problematic for the fisher. Bass are aggressive but wary.  I just enjoy being out there trying.  As Thoreau said, some men go fishing all their lives and never realize it is not the fish they are after.

      My son, Kevin, and I regularly pound the shores of Detroit Lake with bass poppers of our own manufacture.  We use flyfishing gear and have a good time.  The above pictured smallmouth bass did its characteristic fin dance before being brought to hand.  He took the snap on his phone Sunday an hour before sunset, the witching hour.

       We practice catch and release, which drives fish eaters crazy.  If you must have fish, open a can of tuna or visit the butcher shop fish department.  Mr. Smallmouth and brethren were returned to the water quickly and they didn't waste time discussing matters.

      By the way, the portable boat, a Port-a-bote, folds to four inches thick by 12 feet long. When the transom and three seats are removed, it weighs about 60 pounds.  It easily stows on the Yakima rack on my truck roof.  It has seen a lot of water in its time. 

      My HeartMate II made it all possible.  I'm more grateful with every cast, every fish missed, every hookup, and any time on the water.  All I need is a good cigar but alas no tobacco in my future as there was in my past.

     Tight lines.


Have LVAD Will Travel with apologies to Richard Boone

      I've been driving for several decades and have a decent driving record.  To be practical, having an LVAD is no impediment for me to driving a car.  It is not like a person prone to seizures, for example. In some states, seizure patients have restricted driving privileges.  LVADs, for whatever reason, are not in the same category.

     After receiving my HeartMate II in April, 2010, I didn't drive until well after my hospital discharge date.  So far, so good.  I use a pillow between me and the airbag that explodes at 200 m.p.h. from the center of the steering wheel, hoping that it will lessen the impact. My wife and caregiver says I drive too slowly now.  Indeed, my road race days are a memory.

      Thoratec, most likely for liability reasons, does not recommend driving a car or truck in its LVAD Patient Handbook.
However, driving a car, truck, motorcycle, or flying a private aircraft, all involve risks.  I no longer ride my Triumph Bonneville (that's a Brit motorcycle) because of the Coumadin/warfarin blood anti-coagulant regimen I'm on. What may be a bruise to someone with normal clotting capabilities, could be a problem for me.  The Triumph sits in the garage, waiting for its day.  One LVAD acquaintance has gone on several ocean cruises and once rode a camel, a dromedary(that's the one with a single hump).

     Another issue for the motorcycle enthusiast with an LVAD is not being able to hear the audible controller alarms or see the light array that accompanies some of the alarms, including the red broken heart, because I wear the controller on a belt in a controller shaped fanny pack. If an alarm were to sound, I'd never hear it from under my full face helmet and racket of the machine itself. I would not be able to see warning alarm lights without taking my eyes off the road.  Triumphs are not as noisey as Harleys but I wouldn't trade.  It's a loyalty thing from the 1960s, when Nortons, BSAs, and Triumphs were at their zenith. The Triumph I rode had a kick starter and a Lucas headlight system. The headlight had two positions: flicker and off.  You achieved the "flicker" condition by slapping the headlight housing.  Things are better now. Hell, as everyone knows, Steve McQueen drove Brit bikes and that's good enough reason for me Lucas headlight systems notwithstanding. 

     In my household, I do the yeoman's share of the driving on the road and around town. On the road, I try to get out of the vehicle and walk around to keep blood from pooling.  Blood clots and LVADs are unfriendly.  

     I said somewhere in an earlier post of that Dolly and I have a granddaughter, our first grandchild.  She is now a lively 18 month old, living a thousand miles from Fargo.  Air travel was the practical choice for a visit as opposed to two plus days behind the wheel.

     Air travel with an LVAD installed requires some ingenuity in packing one's gear and plenty of flexibility and patience.  A wag once said the key to flexibility is indecision. In these post 9/11 times and since airline deregulation, we fly under strict scrutiny and packed like boxed matches. Indecision is out.  

     The point is that air travel for an LVAD owner is like the round peg in a square hole--it fits with room to spare.  That's in theory.  Much depends on the local TSA and the airline personnel at checkin and the flight crew. Individual experiences will and have varied. One acquaintance travels by air weekly.  He's had a few tense moments explaining to reluctant flight crew members that his carryon bags do not need to fit into the neat box airlines use for carryon size limits.

      I speak from my experience, limited as it is.  There are two significant components of air travel:  airport security and the size of the aircraft.  Just because you have to take all of your LVAD equipment and gear with you, does not mean that it will easily fit on smaller aircraft.


Here is some practical advice gathered based on my travel and those of LVAD recipients I've talked with.  Everyone knows that our airport monitors, the Transportation Security Administration, part of Homeland Security, has  written procedures for passengers with special needs like LVAD patients.

       The local airport is a regional airport and it serves a metropolitan area of roughly 150,000, including Fargo-Moorhead but also towns and cities in all directions for 100 miles.

I found that TSA workers I have dealt with, admittedly not a large sample, are congenial and accommodating.  It is extra work to check by hand all of my equipment.  The test for gunpowder residue and explosives can exhaust the test kits of TSA.

So like the Coast Guard motto, Semper Paratus (always ready), and the Boy Scouts' motto:  Be Prepared.  Pack your gear in smaller bags. Be flexible. Be patient. And, try to smile.  After all, everyone is having one of those days.

Concerned about traveling by air for the first time, I went to the airport a week before traveling to Nashville from Fargo and talked to TSA inspectors about my equipment and needs.  I did a 'show and tell,' displaying my equipment and my travel letters and telling TSA that: 

      --I needed to travel with my power module, extra batteries, and charger in the passenger cabin with me.

     --I needed to be hand inspected as well because the LVAD could not withstand the magnetometer or likely the back scatter radar body imaging scan. (The full body imaging technology is problematic for stopping the pump. The jury isn't even deliberating because I'd rather be safe than have my LVAD interrupted.) 

      --I needed a hand inspection of the onboard bags and my backup controller and equipment. And, 

      --I needed to take with me some site care supplies, including a quart bottle of Hibaclens, and 0.5 ml ampoules of saline solution. (This does not comport with the 3 x 3 in a clear one quart plastic bag).

No problem, I was told.  Show up two hours before your flight. One TSA worker said not to worry about being too specific about my “special needs” but just call the device a "pace maker." 

I had letters from the Ventricular Assist program explaining my condition and my "medically necessary" equipment.  It didn’t seem to matter to TSA.  For some devices like artificial knees and hips, a wallet size card is given by the medical facility to the patient to help explain the individual situation.  The issue with the electric powered LVAD is that it cannot undergo electromagnetic screening.  

Magnetometers and hand held wands create magnetic fields that will interfere with the functioning of the LVAD. The worst case scenario is that the pulses could stop the pump.  The LVAD is a continuous flow pump.  If it stops, the patient will likely go back to his end stage heart failure condition fairly rapidly.  If the pump stops for more than a few minutes, the experts say that it cannot be restarted without the risk of a blood clot forming in the pump.

Knowing all of this, my wife and I loaded my wheeled suitcase with my equipment, loaded a separate smaller bag with bandages and meds, in our car and headed for  Fargo’s Hector Airport. The challenge of TSA is survivable.  I cannot emphasize too much to allow plenty of time and tap into your reservoir of patience.  

In the end, it took talking to three TSA agents before I was clear on the hand inspection regimen that I required. The first time is always trying because few know what an LVAD is.  I wonder how Dick Cheney handled his frequent flights.

All of your carry on luggage pieces, minus the electronic gear, must go through X-ray, I was told. That means the bags themselves. I unloaded everything for hand inspection into three or you trays and sent the bags through the conveyor line and on through the x-ray machine.

Fargo has no body scanner and no longer uses handheld wand.

Remember, the electronic waves and electro magnetic waves created by the screening devices can cause problems for your equipment, which none of us wants or likely could endure.

     Immediately opt for a hand inspection of your gear and yourself  and resolve to be adamant in you request.

Hand inspection is slower but it was not particularly invasive.  It took about 45 minutes to get through the initial TSA security.

That is only the first concern. The question I never thought about before it arose was how is the aircraft configured for storage.

So when you get to the gate there is another issue:  where to stow your stuff. Overhead compartments and under the seat space in front of you may be insufficient.  There was no “crew closet” to stow my rolling duffle.  The aircraft was too small.  But I had no idea before arriving at the gate.  None of the airline personnel had any clue about stowage of "necessary medical" equipment.

Depending on the size of the aircraft, there may not be room for a piece of luggage containing all of your gear.  The aircraft may not have space in the cabin for your gear in one bag.  nFortunately, the airline pilot learned that there was one empty seat on the flight and permitted my big wheeled bag to be strapped into the seat for the trip to Minneapolis.

Meanwhile, my wife scrambled to obtain smaller carry on bags to repack my gear and our son rushed from our home with smaller bags. The lost and found was helpful at the Fargo airport. One of my cardiologists was to board the same flight and he immediately sized up the problem and offered to let me use one of his pieces of luggage.

Once into the Minneapolis airport, we transferred the battery charger and cord to one smaller bag, put the power module, cords and display module in another smaller bag, and had my site care supplies in another bag.
  
The larger wheeled bag was filled with miscellaneous stuff and checked at the gate.  It traveled in the plane’s hold.  The strategy of using smaller bags worked, but it was a tight fit in the overhead and under the seat.

Returning through Nashville, the process went smoother. It still took 45 minutes to clear TSA.  With more manageable sized duffles, the check in and stowage problems were significantly reduced.

By the way, you’ll need to disable the battery backup in the power module to prevent unwanted alarms during your trip.  For this purpose, you can carry a screwdriver in with the power module up to 7 inches in length.  Explain its use before it is found by TSA.

I had letters from the LVAD coordinators at Mayo that explained the no x-ray problem, the no hand wanding problem, and the no magnetometer problem.  I never had to show them to TSA and TSA did not want to see them when I offered.

Bottom line:  relax, try to keep your sense of humor, allow extra time, be flexible in packing, and stay hydrated. It takes some courage for an LVAD travel by air. If none of this makes sense, wire Palidin, San Francisco, for assistance.



Wednesday, June 27, 2012

My LVAD lifeat9200rpms: How it happened


       Here is my story of congestive heart failure and a return to life with a left ventricular assist device, my HeartMate II, an LVAD, manufactured in Pleasanton, CA by Thoraec.

I consider myself a walking-talking-living medical miracle with a second chance at life. I should be dead but instead I am a bionic man.  Bionic in the sense that I have a small, electric powered machine inside me, which is attached to my heart to aid my blood circulation.  

So I am a bionic man.  I do not say this lightly and I do not believe I have overstated the situation. At age 65 and a few months, my lifespan was almost over.

That would not have set well with my wife, Dolly, or for our first grand child, a beautiful baby girl, Aria, born December 26, 2010.  If not for the heart pump I received, I would never have met Aria. I am one of the 10,000 persons with an implanted left ventricular assist device made by Thoratec Corporation of Pleasanton, California.  There are about 5.7 million persons in the United States who suffer from Congestive Heart Failure.

My end stage heart failure was all but alleviated April 2, 2010, at St. Mary’s Hospital of the Mayo Clinic in Rochester, Minnesota.  Now I walk, exercise, climb stairs, snow shoe and generally do whatever I want--all made possible by a palm sized, battery powered pump.  All of the symptoms are gone, but the condition remains.  Congestive heart failure is progressive and, for me, a permanent condition.

I would not be alive to write this story if not for able surgeons who implanted a left ventricular assist device. The clinical trials for the LVAD won approval in February 2010 from the U.S. Food and Drug Administration for use in people like me who are suffering from end stage congestive heart failure.  


Here is a smiling Dr. Joyce.

It has been two years since my pump was implanted and that is a milestone. I have had no significant medical events since leaving Mayo Clinic in May, 2010.  Aside from some heavy nose bleeds, that haven’t recurred in some time, I have accommodated well to the electric life support system.  My surgeon at Mayo's St. Marys Hospital was Lyle Joyce.

I am bionic.  My LVAD works on a pair of 14 volt lithium ion batteries.  A belt mounted computer controller on my waist operates and monitors the implanted heart pump.  I carry the controller strapped on all day everyday. I sleep with it as well.

End stage heart failure required surgery: either an LVAD implant or a heart transplant. My left ventricle, the pumping part of the heart, became increasingly inefficient over time until it was working at about 10 per cent efficiency by the time the LVAD was implanted. Most healthy hearts are over 60 per cent efficient.

The implant procedure was open heart surgery. This involves surgical installation of the pump into the left heart ventricle, securing the pump to surrounding tissue, and connection of the electrical system, which includes the computerized system controller. 

The LVAD is secured to tissue below my heart in my chest cavity.  The pump runs on a low voltage electrical circuit connected to a power source outside the body. During waking hours, the power source is batteries. For rest and sleep hours, the power source is a dedicated electric wall socket with power provided through a step down transformer called a Power Module. 
     
         The drive line from the LVAD traverses my body inside the abdominal cavity and exits my body through a slit in my abdomen on the right side above my waist. Thus there is a permanent wire leading from the pump through the abdominal cavity and then through the skin to the outside. There it is connected to the system controller and the batteries.  This power cord, or drive line, is called a percutaneous lead. 

      The exit site on the patient is treated as a wound, which must be cleaned and redressed daily.  The site care is conducted using masks, sterile gloves, strong antibacterial agents, and sterile dressings that are taped over the drive line site. 

Some LVAD patients do not live through their installation hospitalization. If they do live until discharged from the hospital, statistics show that commonly drive line site infections and strokes from blood clots are leading causes of death.  All patients and their care givers are instructed on the sterile procedures to use in caring for the drive line site. 

Thoratec recommends that an elastic waist belt several inches wide be worn all the time by LVAD patients.  To the binder the drive line is attached by velcro tabs.  The idea is to stabilize the drive line as it exits the body to keep it from being yanked or disturbed to the point of becoming an open wound subject to infection.

Without the controller there would be no way to regulate the pace of the LVAD, which has an RPM range that tops out at 16,000.  Mine is set for a ceiling of 9,200 rpms.  I was told by knowledgeable LVAD cardiologists that experience has shown that a rate of flow above 9,200 revolutions per minute can cause abdominal bleeding and other complications.  So my pace of life through my HeartMate II is fairly high speed.

My wife, Dolly, and I, and our four children have lived in Fargo North Dakota since December, 1981. We moved as a family from the Chicago area.

I was a jogger, rode a mountain bike around Fargo, and routinely worked out either at a gym or with Heavy Hands five pounders.  After a stress test in 2002, a local cardiologist told me I had a Chevy heart rather than a Cadillac heart. My ejection fraction was calculated at 31 per cent. In hindsight, since normal ejection fractions range into the 50 to 60 or higher percentages, 31 per cent was a red flag.  

No meds were prescribed and no cardiological follow up was suggested. I went along ignorant that congestive heart failure was lurking. I’m told that an echo cardiogram is a test that lets a radiologist estimate the ejection fraction of a person’s heart. The estimate is just that. Before congestive heart failure overwhelmed me, I never had an echo cardiogram, never heard of one, and had no interest in finding out about them.

I got a motorcycle for my 60th in 2004 and rode locally with friends. When I changed my law practice in 2005, I did not exercise regularly anymore.  Although I was not sedentary by any means I stopped jogging, bike riding and regular in the gym exercise.  In addition I continued to smoke non-filtered cigarettes until a month before I received my LVAD. I quit because they didn’t taste good.

The pneumonia bout caused difficulty breathing.  I had no idea my left ventricle was enlarged and becoming increasingly ineffective.  I could not walk far, wheezed a lot, had little energy, and was tired all the time.  I thought it was just getting older that was causing the problems.  I lived with it until I couldn’t anymore.

Finally, Mayo surgeons implanted the LVAD.  I spent 53 days as an inpatient at St. Marys. The Mayo team of doctors could find no evidence of the cause of my CHF:  no virus and no abnormalities in the organ itself.  Further my lungs and arteries appeared unaffected by my years of smoking a pack a day.

There was some confusion on my part about whether the LVAD was to be a “destination” therapy or “a bridge to transplant.”  Destination means the LVAD is permanent.  A bridge to transplant is just that, the LVAD is in place while the individual awaits a heart transplant.  My Mayo records carried me as a “destination” LVAD recipient.  

I was told I had to wait six months to go through necessary testing to be listed for transplant because I was a smoker.  After the six months, Mayo agreed to let me do the pre-listing tests. I was declared physically fit but Mayo declined to list me for potential transplant.  I learned later that my age was the game changer.  Informally and sotto voce 65 years old is the cutoff for the surgery at Mayo, no exceptions.

At about the time of that decision, I learned from my LVAD/heart transplant support group that the physicians and surgeons at the University of Minnesota were another option for care.  I was accepted as an LVAD patient by the U of M in April, 2011, a year after my LVAD was implanted. 

After a thorough review of my medical history and some additional testing over a six month period from April until October, 2011, the U of M cardiologists and heart surgeons listed me on Halloween 2011 as a candidate for a heart transplant with UNOS.  

A few months later, former Vice President Dick Cheney received a heart transplant.  He was 71 at the time and had been kept alive by an LVAD for more than 20 months, awaiting a suitable donor heart.  A few weeks ago Thoratec sent me a letter of celebration of sorts because the 10,000th HeartMate II LVAD had recently been implanted.  Clearly, with that many pumps on line, LVADs are here to stay.

My working motto when considering where I am in life is to try to think first of  the alternative to not having a heart pump.  The clear alternative would be death. A new heart would be the ultimate, but the LVAD is great. I’m not complaining.  The LVAD was a gift of longer life.
    
In fact, it has occurred to me that it was likely a one way trip to Mayo Clinic. I was that sick.  I toyed with writing my obituary to save my family from having to piece one together without me.

Apparently the Fargo based heart team on that Friday in March 2010 tried both the U or Minnesota Hospital at Fairview in Minneapolis and Mayo Clinic’s St. Marys Hospital in Rochester to see whether either could evaluate my condition in preparation for an LVAD implant.   On that Friday, March 26, 2010, Mayo Clinic won the coin toss.

During the first day I was in St. Marys, an LVAD coordinator showed me and my family an actual HeartMate II pump.  As I held it in my hand and looked it over, I couldn’t refrain from commenting aloud that the pump, which is L-shaped, looked like something you would use to  replace the workings of a toilet.  No offense to Thoratec.  

The “piece of plumbing” runs multiple tens of thousands of dollars for the hardware alone.  Installation is extra. Ensuring that the LVAD works correctly and effectively is also extra.  I relied on Medicare and my Navy retirement health insurance to cover the costs and that’s what happened.

During my 47 day inpatient stay at St. Marys (there was an additional week in-patient in Fargo), I watched a number of educational videos on LVAD implants and success stories from patients.  One of the videos featured a young man playing a racquet sport while carrying his spare controller and batteries in a back pack. I was skeptical since I could barely stand, let alone walk. I got a boost when a good friend stopped by during her regular checkup for her LVAD, and filled me in on what to expect.  

I received my HeartMate II at a time when Thoratec had just released reconfigured batteries, 14 volt lithium ion batteries with a working life for a pair of them of up to 12 hours per charge.  

My friend had batteries that lasted about four hours per pair and so was constantly changing them during the day.  Thoratec had also reconfigured the power module and battery charger, making them lighter in weight and thus somewhat more portable.

There are some things that change radically when an LVAD is installed.  I am no longer waterproof.  Thus, no swimming, no immersion bathing, no wading to fly fish, no canoeing because of the possibility of tipping, and showering requires some modifications.  Since I’m battery powered, I have to be aware of available electric power sources.  It takes about four hours to recharge a set of batteries. I have four sets, which I rotate.  

I carry two charged batteries as backups everywhere I go in case I need to change them or in case the control module malfunctions and must be switched.  I also carry a backup system controller and the spare batteries in a shoulder bag. It goes with me wherever I go.  If I forget my backup gear, I go home and get it.  

        In addition, each month, I rotate the spare batteries in my bag with two of the other six in my inventory.  Thoratec insists on redundancy in the ancillary but necessary equipment. It makes sense since all LVAD patients are essentially in the same boat. Carrying the backup equipment, which weighs under 10 pounds, is a small concession considering the alternative: no power, no pump, return to congestive heart failure or worse.  Like a good scout, it’s best to be prepared.

At any rate, I, like all LVAD patients, carry a functioning set of two batteries connected to a computerized controller. The controller gives operating instructions to the implanted LVAD and monitors its performance. During the day,  I carry the controller in a nylon pouch on nylon belt around my waist.  The controller is programmed to sound various alarms for most functions and malfunctions.

One of the alarms is a red heart with a broken line through it. I don’t want to hear that one because it means the pump has stopped.  I’ve experience it a few times with power source failures, being unplugged from a power source.  There are booting up alarms that users trigger each day when testing the controller.  During that phase of operation, the controller and pump continue to function but the computer sounds all the alarms in a series of tones to ensure that everything is functioning as designed.  

The controller also records “events” including alarms and   changing power sources up to 150 of them, which Thoratec uses to monitor software functions.  During my regularly scheduled LVAD checkups with my cardiologist, the LVAD coordinator downloads data from my controller to a storage  disk, which is then transmitted to Thoratec for analysis and review.

In all there are eight messages that the controller can convey. Some are accompanied by audible and visible signals. They range from the Red Heart with a solid visible signal and a steady audio tone.  This signal means the pump is experiencing a low flow hazzard of less than 2.5 liters per minute, or the pump has stopped, of the percutaneous lead has been disconnected, or is the pump is not working properly.  This one is the biggee.  One of the signals is an audible tone unaccompanied by any light that signals the pump controller is not receiving power.   

 It takes some study and review to ensure a functional awareness of the system controller warning lights and sounds and what to do to in case they sound or show.  I review the warning signals often.

At night or for anytime I think I’ll fall asleep, I shift from batteries to a dedicated electrical outlet and use a piece of equipment called a power module. The point is that a sleeping LVAD patient might not hear an alarm. 

The PM is connected to a data monitor that shows flow, speed of the pump in RPMs, amount of electrical current being used by the LVAD and something called the pulsatility index.  What do those numbers mean?

Flow concerns the total amount of blood pumped per minute.  The human body contains approximately 5 liters of blood. Acceptable flow ranges are from 3.5 to 7 liters a minute.
 
The display module shows the electrical power the pump is drawing, typically for me the power is about 6 + watts.  The acceptable range is 4 - 8 watts.  The pump speed maximum is preset by the LVAD cardiological team.  Mine is set at 9,200 RPMs.  The setting acts as a governor keeping the pump from rising above that rate.  In addition the lower end of the preset range is 8,400 RPMs.  

An alarm will sound if the rate drops below that rate and further action by the patient is required, namely to call the on duty LVAD coordinator to assess the situation and, if necessary, a trip to the ER or being life flighted from Fargo to Minneapolis for possible surgery to replace the LVAD.  Fortunately, my contact with LVAD coordinators has been by phone.  They are a dedicated group and are available at any and all hours.

Finally, the pulsatility index is a number based on an algorithm.  I was told the PI is a view of how the pump is pumping in conjunction with natural heart function. The acceptable PI range is 3.5 - 6.5.  The HeartMate II is a continuous flow pump. It is called a non-pulsatile pump because the continuos flow doesn’t surge like  a healthy heart.  

Many LVAD patients do not have a discernable blood pressure using a standard blood pressure cuff.  But a doppler (like the device used to produce a sonogram during pregnancy, using ultrasound equipment) kit will accurately give a blood pressure reading. The doppler kits are less readily available. Fortunately, my blood pressure can be measured using my right arm.  Also my pulse is quite soft and takes practice to establish.

The numbers generated on the monitor are somewhat fluid depending on a number of factors including patient hydration, physical condition, and salt intake. Each morning, I record my display monitor numbers on a chart. I weigh myself and note that as well. The U of M wants to know the numbers, particularly weight gains, usually due to water retention, of more than three pounds in a day. Such a gain puts extra stress on the LVAD and the patient’s heart.

I wear the same belt mounted controller overnight.  Instead of two batteries, which I carry in an undercover police holster shirt, I plug into the PM using a 18 foot long tethering cable.  The tether allows me to move within the 18 foot radius, enough to use bathroom sinks and toilet. Portable urinals are my option when regular facilities are beyond 18 feet.

When I travel, I must carry all my equipment with me in a large rolling duffle. The power module, the battery charger, display module, various cords, and four extra batteries, along with an emergency battery pack that is designed for one time use of up to 12 hours.  The battery pack, which weighs twenty some pounds, must be replaced after a single use, no matter how short.

The LVAD has one moving part, the impeller.  The LVAD is based on the screwlike machine invented by Archimedes, the renowned Greek mathematician, inventer, and engineer of the ancient world.  The Archimedes screw or screw pump involves a simple machine used to lift water from low lying areas for irrigation purposes.  

The pump consists of a helical device inside a pipe like structure. Turning the screw, moves the fluid through the pipe.  Similarly, in the HeartMate II LVAD, the helix is powered by electromagnets moving blood through the pump and into the body.  It has a ruby jeweled bearing and is self-lubricating.   Earlier LVADs were pulsatile pumps with internal valves that could and did fail.  

       Thoratec’s HeartMate II has now been implanted in 10,000 patients (April, 2012).  In a way, we LVAD owners are all in an experimental stage because the limits of the machine are unknown. As of this writing,  one LVAD has been in place for more than six years.  As the company says that's 10,000 reasons to believe. Each of my LVAD compatriots only needs one reason to believe and it is inside their chests.