My Life at 9200 rpm's: Christmas monorail ride

One of the attractions of the Christmas season in Chicago, was to see the animated figures in the windows at Marshall Field's. All of the ground floor windows of the block-square store were wonderfully decorated.  The designs changed each year.  Uncle Mistletoe, a Field's perennial character was featured in many windows. Another attraction was the huge Christmas tree that stood a part of the store that was rotunda-like and at least five stories high.

But the best of all was the kids' monorail that was suspended from the ceiling at Sears. It was a real people moving train that soared over the holiday shoppers. It traveled all around one floor of the store at the south end of Chicago's Loop. The train was on an upper floor where the Sears toy department was.

I only recalled the monorail as a random thought.  As a youngster in the 40's and 50's in Chicago, we experienced some things that today's youth will not.  And so it goes; just like the Ringling Brothers big top.

The train had enclosed cars and crept along the suspended rail that circumnavigated the periphery of the store. The train traveled over Santa as he talked to children and over all of the displays and counters.  It was always full of riders and the wait for a turn took forever.  For a kid, it was thrilling.

I learned that the monorail's manufacturer was the Louden Machinery Company of Fairfield, Iowa. Louden was active in the late 1800's, essentially as a farm machinery developer and manufacturer.  The monorail was not for farm use at all but was adapted from some of the company's other applications.

Specifically, it stemmed from the company's invention of a sliding barn door assembly. You've all seen pictures of sliding barn doors. The Louden door had rollers along its top edge that hooked into a track.  The door, usually one piece and very heavy, could be opened and closed with mechanical ease using the roller track. 

A few imaginative modifications to the barn door opening assembly after WW II had Louden building child sized sky rail systems. Besides Sears in Chicago, large stores like the Wanamakers in Philadelphia and the Meier and Frank Store in Portland, Oregon had monorail rides. There must have been about a dozen kiddie monorail rides across the country.

I do not know how long the monorail lasted but I didn't ride it after the early 1950s. 

My Life at 9200 rpm's: Welcome HeartWare

This week the U.S.  Food and Drug Administration gave approval to an LVAD that is smaller than mine.  It is made by HeartWare of Framingham, MA.  It has been a head on competitor of Thoratec's HeartMate II, which received approval as both a destination (read permanent) and bridge to transplant device by the FDA in early 2010.

In my view, the competition is healthy.  You cannot have too many lifesaving devices out there for those who have end stage congestive heart failure.  

With the approval as a bridge to transplant, HeartWare is seeking approval as a destination therapy device. Undoubtedly, it will succeed.  Here is a link to one account of the approval:  http://www.medpagetoday.com/PublicHealthPolicy/FDAGeneral/36041

The American Heart Association estimates that there are more than 5 million Americans with congestive heart failure, a figure that grows by about 600,000 per year.  Because of other medical issues the number who can receive LVAD implants is quite small.

In the past few years, the HeartMate II has been implanted in more than 10,000 patients worldwide. Mine is number 8358, and it was implanted in April 2010.  The 10,000th HeartMate II was implanted this year. That computes to 750 to 1,000 of Thoratec's LVAD being implanted yearly.  Compare that multi-year total with the estimated 600,000 new CHF sufferers added to the ranks and you can see how few LVADs there are.  Hence, welcome HeartWare's HVAD.

HeartWare's pump is smaller than the HeartMate II. The external gear, computer controller and batteries, are smaller and lighter weight.  The set up makes an LVAD accessible to smaller sized adults and children.  

The HeartWare pump is called an HVAD.  It is based on a centrifugal force to pump blood to assist the CHF sufferer's inefficient left ventricle.  The HVAD is shown as being attached to the lower side of the left ventricle. 

 Like the HeartMate II, the HVAD system has a percutaneous lead that exists the abdomen of the patient to connect with the external controller and power source.

The HVAD batteries are worn in pairs but the system apparently works on one battery at a time and the system shifts to the spare battery after about six hours.  The spent battery must then be changed out.

The HeartMate II is a continuous flow, non-pulsatile device.  Mine is set at 9200 rpm's.  Other HM II's go slower and faster as determined by the LVAD team.  It runs on two 12 hour batteries at a time.  The controller and external batteries are weightier than the HVAD's.

Having more approved ventricular assist devices available in the medical marketplace is a good thing.  More options.

If you suffer from end stage congestive heart failure and are otherwise healthy enough to tolerate the surgery, get the facts from a VAD center physician.  

From my experience, not every cardiologist is knowledgeable about LVADs, their benefits and drawbacks.  But at a VAD center,  like the University of Minnesota Hospital, Mayo Clinic, or Abbott-Northwestern in Minneapolis they do. Don't delay.  Get an assessment of the potential for LVAD implantation.  

The life you save, may be your own.

My Life at 9200 rpm's: First Thanksgiving Post

This series of narratives began last June, after visiting Thoratec in Pleasanton, CA.  I got to meet other LVADs, and learned that some of them were already blogging.  

I'm uncertain about who may be reading these posts, which I must say I believe wouldn't interest very many people other than friends and family.  At the same time, some of the posts about life with an LVAD may be helpful to others who have end stage congestive heart failure or know someone who does.  That population in the U.S. alone is huge and growing by the day, month, and year.  Many are not as fortunate as I have been to be healthy enough to receive a Heart Mate II (or any LVAD for that matter).  Many have had complications:  strokes, internal bleeding, drive line infections to name a few.

As Thanksgiving 2012 approaches, I am committed to continuing to pursue this blog in the hope that some may find a nugget of information or encouragement that might help them.  In my case, as I've made reference, I did not have any other choice: get an LVAD or do not pass go but proceed directly to the cemetery.

I am thankful that, in the words of one Mayo cardiologist, I have tolerated the LVAD well enough to be almost 32 months downrange from its installation.  I was curious about the use of the word "tolerate" in referring to the LVAD.  I have learned that many LVAD recipients have had health issues that I've seemed so far to sidestep.  I am so fortunate.

But my attitude is that just because I got an electro-mechanical circulatory support device, that does is not guarantee anything.  Today is all anyone can look forward to, and that notion applies especially to to me as an LVAD.  That is not a negative.

I have been listed for potential heart transplant, which my LVAD has allowed me to do.  If such is to be in my future, it will present a different set of challenges.

Recently, I read a CNN health blog that featured a singer, Charity Tillemann-Dick.  She is an aspiring opera soprano from Denver whose lungs failed two years ago because of pulmonary hypertension.  The operation, a double lung transplant, was successful but she began to experience  failing lungs again recently.  

She blogged about her ordeal and the blog post appeared on CNN's "The Chart" health blog. She needed a second double lung transplant.  She was in a hospital ward at the Cleveland Clinic where another young woman, who also awaited a second double lung transplant.  The other woman was not as fortunate as Tillemann-Dick.  She died six months before Tillemann-Dick was matched for a second double lung transplant.  The wait for a donor organ or organs can be a killer.  My LVAD has allowed me to wait.  

Two heart donation offers have been made to me through UNOS's ever watchful computerized selection site.  An offer is no guarantee. I am fortunate that the University of Minnesota transplant surgery team called a halt to both offers, which were found not to be suitable during on-site inspection.  I am grateful that I can wait without pain, discomfort, or significant tribulation. 

Best to all LVAD Warriors and their families.  We all have good reason to be thankful.

My Life at 9200 rpm's: What do LVADs do when the power goes out?

As everyone knows who has read a few of my blog posts, LVADs are electrically powered:  batteries by day and a power module transformer by night.  Hurricane Sandy caused problems for LVADs and countless others in New York and New Jersey who depend on a reliable source of electricity for survival:  kidney dialysis,  those who rely on oxygen generators, and rocking bed ventilators among others.

One of my LVAD brothers has a blog called From The Bottom of My LVAD and he linked to a recent news story about a New York man who has had an LVAD for less than a year.  The man, ironically a former employee of an electric power company, could not find a source of power to recharge his LVAD batteries. 

A fire station turned him away. A hospital ER reportedly turned him away. What were they thinking?  The fire fighters were said to be polite but adamant:  no power for you Mr. LVAD.  Go to a shelter and plug in.   

As for the hospital, its protocol apparently required that any person seeking service needs a physical exam.  The LVAD owner did not need a physical exam, and reportedly could not afford one.  He did not want to receive medical attention.  He wanted to charge his batteries.  But he was on his own.

Of course, all of us are on our own.  But if a hospital has power and a fire house has power, don't you think an exception could be made to permit a person in need to plug in his battery charger?

In my view, there is no excuse for such a refusal.  Admittedly, I have an LVAD and a bias in favor of continued life. It's not as though everyone will be lining up outside the fire house or ER to plug in a battery charger.

In the end, Carol and Lou Cardinali, the LVAD and his caregiver, were able to use a portable generator offered by a neighbor.  I can only imagine being in the Cardinalis situation.  Our electric supply company has a program that gives priority to those who have life sustaining medical equipment.  Whether the program is honored is anyone's guess.  On Long Island, during Sandy, a similar program apparently failed.  It's a jungle out there, right?

There were some comments accompanying the Newsday newspaper story, in which some readers heaped blame on the fire station and hospital and others blamed the Cardinalis themselves for not being more self reliant.  Go buy a generator for such emergencies, they were told.  You should know that in hurricanes, there are power outages.  Plan ahead.  Good advice with hindsight.

A better suggestion from a couple of readers was to buy a device that would allow the Cardinalis to plug the LVAD battery charger into their car to recharge the batteries.  So as long as the Cardinalis had gasoline (problematic in a Sandy and similar storms), they would have power.

I cannot tell from the photo accompanying the article on the Cardinalis dilemma which type device he has.  I do not recognize the manufacturer of the LVAD.  I know the battery charger was not like my Thoratec charger.  We are issued a charger and four pairs of batteries when discharged from the hospital.


Mine has four slots to recharge four batteries at a time.  I use a pair and have a pair in reserve with two pair in the charger.  Charging takes three or four hours.  In the best circumstances, I might last about 48 to 60 hours on my batteries.  I have a one time use 12 hour emergency battery pack that would extend my viability.

As I sit here, I never contemplated having 60 to 70 hours to live, if I was in a power outage like the one accompanying Hurricane Sandy. But that's a fact.  Fortunately, I would be able to drive somewhere to replenish my batteries.  In bad weather that is problematic.

I might have to find an electric generator and have a plan B as well.

My Life at 9200 rpm's: Another dry run but alas the donor heart was unacceptable

It was only a 35 minute trip to Minneapolis from Detroit Lakes by air ambulance.  We landed at an airfield at Blaine and went by ground ambulance to the U of MN medical center. Tension was high.

After a frenetic 2 1/2 hours, I was wheeled to the operating room theater. The LVAD coordinator on call met me and the anesthesiology team and said the U of MN surgeon on site to assess the donor heart determined it to be unacceptable, and the operation was called off.  We were told to stand down.

We learned that the donor's heart was deemed unacceptable by the inspecting surgeon.  Reasons are rare, if given at all, for these kinds of decisions.

The LVAD coordinator said that while frustrating not to have undergone the transplant, any organ can be rejected by the harvesting surgical team or the transplant team until the operation is underway.  Unacceptable donor hearts apparently are more common than I understood them to be.  The LVAD coordinator with lots of experience said that problems with the donated organ are typically magnified once the transplant is accomplished.  I am fortunate to have been offered a heart.  That things didn't work out is a fact.  

It simply was not my time.  I remain good to go and am getting practice for the next alert, if, as, and when it comes along.  UNOS is at the helm.  Two offers of a heart in three months is a lot.

Meanwhile, my HeartMate II is serving me well.  What a luxury it is to have such an option.  Without it, I wouldn't be here to write this post.  I am grateful.

My Life at 9200 rpm's: The call came from the University of Minnesota...All ahead. Flank Speed.

Chance favors the prepared.  The call came from the heart transplant coordinator at 3 p.m. today.  We were doing errands and raced back to the cottage in Detroit Lakes to get my gear.

The air ambulance will pick us up at the DL airport for the trip to Minneapolis.

This is uncharted territory for me and all of us in my family and circle of friends.  I am grateful for every day and for all of those who have shown their support and shared their prayers.

I'm as healthy and reasonably well exercised as I can be and the LVAD is working as designed.

The adventure continues.

Adios for now.

One year and one day on the heart transplant list: But who is counting?

        Halloween marked the passing of a year on the heart transplant wait list.  It sped by.  Because I was listed on Halloween, it is easy to remember.

     My HeartMate II was installed when I was 65, almost 66.  Lyle Joyce, M.D.,  and his associates implanted it at St. Marys Hospital of Mayo Clinic in Rochester, MN.  As soon as I was thinking clearly, my thoughts focused on recovering and getting healthy.

     As readers know, congestive heart failure is no picnic.  I never thought I'd feel better.  The LVAD made all the difference. It took a while to build endurance, develop balance, the ability to walk and other things. My LVAD gave me the chance to recover and get healthy.  I wouldn't call it second nature to have this device but the device and I get along famously for the most part.

     The Mayo team said it would be months before I could be considered for being listed for transplant.  I smoked until a month before the implant. To be considered for listing, all other health factors aside, a candidate must be tobacco free for six months.

     By September, 2010, my six months was up.  Mayo put me through a week of tests.  All my systems were good: kidneys, lungs, liver et al.  Yet the decision Mayo made was against being listed.  I had "two co-morbidities": my age, then 66, and an implanted mechanical circulatory device--LVAD.  

     Does anyone except a medico, consider age a "morbidity?"  Age cannot be discounted.  That's a given.  Everybody dies of something, right?   
     
     My damaged left ventricle will not recover.  I recognize that. Its essential pumping functions were replaced by the LVAD. It will be with me until further notice.

     It is ironic that both co-morbidities were known before the Mayo transplant evaluation commenced.  I always wondered why Mayo would conduct the evaluation with the myriad medical tests, if it were a foregone conclusion on Mayo's part that I was not a candidate for a new heart.  I never got a straight answer.

     But months later, I learned that Mayo had an unspoken and unacknowledged age limit of 65 for being considered for a heart transplant.  Clearly, I was past the deadline when I applied.

      Fast forward to April, 2011.  I decided to seek a second opinion about being a heart transplant candidate.  Make no mistake, I remain comfortable with my LVAD.

      The University of Minnesota Physicians Heart at Fairview in Minneapolis is where I chose to seek care as an LVAD patient.  I was accepted as a patient in April, 2011, and was listed as a candidate for transplant on October 31, 2011.

     So I have passed a year on the UNOS (United Network for Organ Sharing) heart transplant list.  The transplant surgeon at the U of MN said if he had to guess, I would be on the list for about 14 months before a donor heart might become available.  I have the same two "co-morbidities" that I had at Mayo, but they do not seem to be an absolute impediment at the U of Minnesota.

     Further, the U of MN doesn't have the same cutoff for the age of the recipient as Mayo did. Recipients into their 80s have been transplanted. I'm in no hurry but it wouldn't make a bit of difference if I were.  No one knows if, as, or when a suitable donor will present himself.  I only noted the year of waiting as justification for writing this blog post.