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.