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.