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Thursday, December 27, 2012

My Life at 9200 rpm's: Undetected Heart Disease in U.S. Soldiers, LVADs, and the road not taken

Heart disease has been called the silent killer.  One of the reasons is that a person with the condition might not show any symptoms and would be unaware of the danger lurking in the form of plaque in arteries, particularly the coronary arteries, which supply blood to the heart muscle itself.  Heart disease kills about 600,000 Americans each year, accounting for about one of four deaths.  

A recent study of U.S. service members deaths in Iraq and Afghanistan, reported by Reuters and carried on the Fox News website, showed that nine per cent of the 3,832.  That is more than 1 in 12 military members.  

The study covered men and women deployed for service in the Operation Iraqi Freedom/New Dawn and Operation Enduring Freedom between October 2001 and August 2011.  The lead investigator, a physician, is from the Uniformed Services University of Health Sciences, Bethesda, MD.

The autopsies were originally performed to give the families of the service members a complete picture of the cause of death for their loved ones.

Not all were combat casualties. Some fatalities were caused by unintentional injuries. Ninety eight percent were male and two percent were female. 

The most interesting aspect of the study was that none of the 3,832 individuals was diagnosed with heart disease before deployment to the war zones.  Routine pre-deployment medical exams found nothing to worry about heart  wise. The average age of those in the study was 26. 

But the study gives some insight into the overall general heart health of our young, physically fit soldiers, sailors, airmen, and marines.  Of the 3,832 cases, about 9 percent or about 331 individuals showed signs of plaque build up in the coronary arteries. The study found that about 25 percent of the 331 personnel had artery buildup that was labeled severe.

One drawback to such a study is that it deals with a select group that may not be representative of the population as a whole because the military is all volunteer.  Earlier studies involved individuals who were subject to the Selective Service draft. Below is a link to the story.
http://www.foxnews.com/health/2012/12/26/1-in-12-in-military-has-clogged-heart-arteries/

What this study tells me is that even without symptoms, high cholesterol can lead to narrowing of the coronary arteries.  By the time of a stroke or a heart attack, it may be too late to treat. 

Speaking from experience, heart conditions can kill you and you don't even know you've got the condition. I did not recognize what I had.  It was congestive heart failure and it had a good hold on me. 

I did not know  exactly what symptoms I should be aware of but I did not pay attention to the symptoms I was having: wheezing, shortness of breath, fatigue, among others. 

I'm certain there were many signs I missed, all of which worsened over a several month period.  When my health deteriorated and I hit the wall, I was as surprised to learn that I had end stage congestive heart failure. 

It took being close to my last hours on the planet before I accepted my condition.  In my condition, choices are limited. There was nothing I could do about it.  Acceptance was the only option. Now I have a mechanical circulatory support system and it has made all the difference.

My HeartMate II LVAD has allowed me to take the road less traveled by.  And that has made all the difference.

Friday, December 14, 2012

My Life at 9200 rpm's: You can save up to 8 lives as an organ donor

The U. S. Department of Health & Human Services reports a good answer to the question Why Donate? The proposed answer:

"Because you may save up to 8 lives through organ                    donation and enhance many others through tissue donation.  Last year alone, organ donors made more than 28,000 transplants possible."  You can read more on the agency's website:  organdonor.gov.

Cornea and other tissue transplants helped another estimated 1-million people recover from bone damage, trauma, spinal injuries, hearing impairment and vision problems. However, thousands die yearly waiting for a donor organ that never comes in time.

I am on the heart transplant waiting list through the University of Minnesota Medical Center, having been listed on Hallowe'en 2011.
A HeartMate II LVAD gives me the chance to wait without the concern of many whose lives depend on a suitable donor organ.  


My LVAD is literally a life saver. But I am one of the grateful few with end stage congestive heart failure who can afford to wait.
Most others with end stage organ issues confront an unwelcome but inevitable consequence, death.

Based on the waiting lists and available statistics, about 79 people a day receive organ transplants in the U.S. but 18 people die every day waiting for a donor organ.  Currently there are some 116,000 people on waiting lists for various organ transplants. Some people are listed on lists at more than one transplant center, which is confusing.

Statistics are so sterile. Talking about the data, you forget that each of the numbers represents a human being.

After reviewing the website organdonor.gov, I learned some things I didn't know:  most people can donate, age is not a deterrent, most medical conditions do not disqualify a donor, and there is a need for minority donors.  

That need is caused by the greater likelihood that minority groups suffer three times as many end-stage kidney failures, which can be attributed to high blood pressure and other conditions that cause kidney damage.

Visit the website and make an informed decision to donate life.  You can register your preference for the Dakotas, Minnesota, and Wisconsin at www.donatelifemidwest.org




Sunday, December 9, 2012

My Life at 9200 rpm's: the dreaded driveline infection

LVAD #8358, my HeartMate II, is performing as designed, keeping me going, and giving me the opportunity to be on the waiting list for a heart transplant at the University of Minnesota.  

For the last 32 months with an LVAD I escaped a driveline infection, but I'm battling one now. Who knows what happened?  Even with a heightened awareness of the potential for infection, bacteria can cause problems. The driveline exits the abdomen of LVADs and it is treated as a wound site, with sterile dressing changes at regular intervals.

I have read and have been told that a site infection is quite common in LVAD implants because the wound site is tender and susceptible to tears.  Essentially the driveline is unsecured except for external Velcro tabs that hold it in place on an elastic binder.  The binder is used to hold the wound dressing in place and as a place to attach Velcro tabs to immobilize the driveline after it exits my abdomen. Immobilization is a relative term because the driveline can still be moved or tugged.


At any rate, the seal at the wound site is fragile and can be broken with the slightest tug on the driveline.  Driveline tugs sometimes occur.  I have been fortunate that no significant tugs on the line have occurred. 

Although the site is maintained as sterile, a break in the seal of the skin at the wound site is a fact of life for an LVAD. The break in the seal, even a slight one, can lead to an infection.

 As you may know from earlier posts, the driveline is another name for the percutaneous lead that carries power to the LVAD.           Percutaneous means through the skin.  Thoratec, maker of the HeartMate II LVAD, is developing a device that will be fully implantable with no external driveline.  It follows that with no wound site there would be no infection issue.

A Thoratec engineer talking about research and development said that a fully implantable LVAD with power system is some years away, five at a minimum.  The batteries that I carry will be miniaturized, implanted with the LVAD pump unit, and will be recharged using an external system.  The combination of miniaturization and external charging, will allow an LVAD to be fully immersible.  

Being waterproof would be a great improvement over the system I use, which must be protected from rain, bathing, showering, swimming, wading, boating, fishing and the host of other wet activities.

But that is in the future.  For now, LVADs' lives are maintained with the electrical system as it exists.  The potential for tugs and movement of the driveline is always present.  Either of those driveline movements could create the conditions that cause an infection. 

A friend's driveline site became so infected that he needed inter venous antibiotics and was hospitalized. The break in the seal of his drive line site was an unforeseen consequence of taking a shower.  His water resistant shower bag, in which LVADs secure their electronic system controller and two batteries, fell off its hook and yanked on his driveline. He had used the shower bag and hook for years with no negative consequences.

Now, he must take oral antibiotics until he receives a heart transplant or until his LVAD is replaced.  The problem is that just because the infection is controlled at the driveline exit site, that doesn't mean that the infection is resolved.  

The infection can migrate along the driveline to the heart. It is possible for the infection could "seed" the pump itself. Since the pump has no blood circulation of its own, the infection could last on the pump even if the driveline site is clear of infection.  That is a dangerous situation, potentially fatal.  Hopefully, long term antibiotics can keep the infection at bay.  No guarantees.

In LVAD living as in life for everyone, there are no guarantees, there are no assurances, there are no promises.  I am fortunate to be among the few of hundreds of thousands of congestive heart failure sufferers with an LVAD.  Not many can say they have another chance at life.  


Wednesday, December 5, 2012

My Life at 9200 rpm's: The future at 60 minutes per hour

Doing Navy duty in London some years ago, I grabbed a colleague by the collar as he stepped off the curb of a busy street without looking to the right.  As a "colonist" from across the pond, we don't drive on the left.  For us it is the wrong side of the road 

My friend, I'm sure was imbued with the warning to look both ways, but in London the memory failed him. He looked left and began to plunge into oncoming traffic from the right. He narrowly avoided having a double decker bus ruin his evening.  

The point is that neither of us knew or could count on surviving the rest of our assignment in a foreign land.  All we had were dinner plans at a rushed pace before returning to our North Audley Street hq, across from the U.S. Embassy at Grosvenor Square.

We were working port and starboard watches, 12 hours on, 12 hours off.  The change came on the 7's:  0700 and 1900 daily for three days and then we would switch to the other's schedule.  This went on for nearly a month. But all of that could have changed in a flash, a matter of seconds. 

There's always something to learn about "driving" an LVAD so to say. Be prepared for the unexpected.  That doesn't mean that I'll have the answer, but being alert helps.

Clearly, depending on an LVAD to survive, sharpens the focus on the minutes in an hour.  It hasn't become a distraction or an obsession by any means.  

But planning has to be practical and realistic.  When, leaving my house, I carry a pack with spare batteries and a spare system controller. Yesterday, the small battery in my LVAD system controller began to sound an alarm, one quick beep, twice in an hour. What's up with that?

This had not happened before.  The beep was so quick that it was difficult to capture visually.  The second time, I caught a glimpse of the yellow light as it was going dim. 

I called the U of Minnesota to talk to an LVAD coordinator, and, after a brief conversation, we got to the bottom of the issue. The problem was solved by changing the battery module.  I had two spares on hand and, in a pinch, I could take the one in my spare system controller.

But when the initial signal sounded and showed, I had no fixed idea about the outcome.  Did I have 60 minutes, 60 hours, 60 days?

Accepting that I and my equipment are a working experiment, you have to be prepared for the unexpected.  This is not an exact science.  There is some art involved. As the saying goes, you can plan the plan, but not the outcome.  

Semper Paratus (always ready).


Monday, November 26, 2012

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. 



Sunday, November 25, 2012

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.

Tuesday, November 20, 2012

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.







Wednesday, November 14, 2012

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.


Monday, November 12, 2012

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.

Sunday, November 11, 2012

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.

Thursday, November 1, 2012

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. 
     

Friday, October 26, 2012

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.


     
      

Sunday, October 21, 2012

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.

     

     

    


Thursday, October 18, 2012

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.

Thursday, October 11, 2012

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? 

   

     

     

Sunday, October 7, 2012

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.   
     

Thursday, October 4, 2012

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.

     

Wednesday, October 3, 2012

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.

     

Friday, September 21, 2012

My Life at 9200 rpm's: Can you smell the elephants?

     As a kid in Chicago, I looked forward each Spring to the circus coming to town. Beginning a week beforehand, the newspapers heralded the arrival Ringling Brothers, Barnum and Bailey's "Greatest Show on Earth" big top circus.  

     It literally rolled into town on a special train, followed by a parade of the troupe and the animals and their keepers.  At the time, I lived with my family on the South Side of Chicago.  For me, the circus was always worth the wait.  I liked the clowns and animal acts best.

     Most years my dad took me and my brother to the circus. There was always too much to see, hear, and experience.

     Several times I watched the circus parade through the Loop but the most fascinating spectacle was watching the circus elephants help erect the Big Top. I watched it for three years at least ending in the early 1950s. 

     It was in 1952 or 1953 the circus decided not to set up on the city's lakefront south of Soldier Field. Since about 1919, the circus had occupied essentially the same place in the parking lots adjacent to the south end of Soldier Field. I don't know what happened but the Chicago Park District and the circus apparently couldn't reach financial terms.  

     After that, the circus moved indoors when it came to town, first to the Colliseum and then to the International Amphitheater at the Chicago Stock Yards and finally to the northwest suburbs. It was never the same without the wind blowing off Lake Michigan. The big top seemed to have its rightful home at water's edge.

     At any rate, the day the last big top went up in Chicago, we arrived in the afternoon at the lake front site.  We watched for the last time as  elephants with their keepers, and assorted workers assembled the tent and raised it from a huge segmented pile of canvas to about 70 feet at its peaks. 

     What seemed like chaos, produced a weather tight shelter and stage for three hours of wonderful show biz. I recall five rings but could be wrong. It was a weekday but I don't recall missing school to see the tent go up. 

     The elephants hauled canvas, ropes, and support poles. The loads were tremendous--hundreds and hundreds of pounds.  I  cannot recall exactly but there must have been three dozen elephants at work. 

     Their keepers, by turns, coached and prodded them to work cooperatively to hoist the canvas and erect the poles.  The elephants moved the heavy loads of canvas and held tremendous poles in place while workers drove stakes to tie down the poles holding up the canvas.

    The elephants seemed to work easily and relatively quickly because it seemed like the whole process only took a couple of hours.

     We stayed to see the first show.  I recall the ringmaster's standard spiel, in which he invited "ladies and gentlemen, boys and girls, and children of all ages...your attention please."  

     Then he would direct our attention to the center ring for whatever extravaganza was about to mesmerize a seven or eight year old and anyone else who cared to be transfixed by the colors, action, sounds, music and the smell of the elephants.  When I think about it, I can still smell the elephants.

Thursday, September 13, 2012

My LVAD life at 9200rpms: LVAD support group situation report (SITREP)

    Since September, 2010, I have been attending monthly gatherings in Fargo of those who have LVADs and some who have had heart transplants.  For those seeking an LVAD, know that if the implant is successful and you get to go home, the sailing will not necessarily be smooth.  

     For some of us, it takes months to feel relatively normal.  Regular exercise and healthy diet help.  Attitude is key.

     Fortunately for me, my LVAD and body are compatible or as one of the Mayo Clinic cardiologists said, "you tolerate the pump well."  Heck of an endorsement, right?  I've talked about this before but strokes and drive line infections kill LVAD owners more than any other complication.

     The LVAD support band brothers and sisters at Sanford is a mixed group by education, age, and work history.  What we all have in common is an appreciation of life, what we've overcome, and a sense of gratefulness of each day.   

     In early 2010, the FDA approved Thoratec's HeartMate II for both destination therapy and transitional or bridge to transplant therapy for end stage (read ready to die) congestive heart failure patients. No other LVAD maker can make that claim. 

     Even though I've had mine since April 2, 2010, I am under no illusions about their capabilities.  Heart pumps are not fool proof. While no maintenance is required,  they are machines and can fail. 

     An LVADs meds need to be monitored closely.  The meds generally are to control blood pressure, and heart rate, and to try to ensure that an LVADs blood supply has a slower clotting rate than normal.  The pump cuts up red blood cells, technically called hemolysis, which can lead to anemia.

     Strokes and dizzy spells were discussed at the most recent meeting.  As I understand it, blood pressure for LVADs is maintained lower than it is for healthy hearted people to ease the ability of the heart pump to do its work.  When a person's blood pressure is kept low, standing suddenly can cause dizziness or fainting.

     Several of the dozen LVADs have experienced dizziness and fainting.  One participant who has had a heart transplant approaching eight years, said simply that he has purposely made himself get up more slowly.  Makes sense.  Who remembers to rise slowly every time.  Events happen.

    Another group member has experienced his second stroke as an LVAD.  It hospitalized him for some time.  He reported that his doctors at the University of Minnesota attributed the stroke to hi LVAD breaking down or cutting up red blood cells.  The cells collect and cause a clotting effect.  I'm not a physician or an engineer, but the explanation seems valid.  

     So the question becomes How does an LVAD owner guard against a stroke?  There is no simple answer, I'm told.  Pump speed can be reduced.  Mine is set at 9200 rpm's as the top end based on Mayo Clinic's experience that higher pump speeds cut up more red blood cells. Conversely too low a pump speed can lead to clotting and other serious even fatal incidents.  But without the pump, I and other LVADs would be only a memory to our families.

    Drinking fluids,  staying hydrated, is also critical. The Camelbak company that supplies water reservoirs you carry with you had a slogan that is more true for LVADs than thirsty hikers:  Hydrate or Die.

    Maintaining an INR (International Normalized Ratio) within the range prescribed for LVADS is another factor.  A normal person's INR is about 1.0.  My INR range is 2.0 to 2.5. My friend's must be maintained above 3.0. These elevated INR levels help keep our pumps from having fatal clots.  

    I have a home monitoring kit with which I test my INR once a week and report the results to the Sanford Anti-Coagulation Clinic and the kit's manufacturer.

    In many ways, LVADs are pioneers.  We are the few in daily experimental mode.  Over 10,000 HeartMate II pumps have been implanted world wide.  I don't think about being a pioneer.  It's enough to be here in 2012.  If my LVAD gets me to the point where I get the gift of a heart, that will be a good thing.  Meanwhile, I'm good.  Never quit.

Monday, September 10, 2012

My Life at 9200 rpms: Last gasp of a drowning man?

     Sunday dawned with no wind on the lake.  Son Kevin launched the small boat, a 12 foot Porta Bote, with newly minted six horse outboard attached.  

     I've been in the boat for jaunts (slow) up and down the lake shore, fly casting for bass.  But we never opened her up.  

     There were finally 10 hours on the engine and its break in time was up:  full speed ahead.  This was a first.  He was alone.  The "all stop" emergency cord dangled in the stern.  

     The "all stop" plastic clip has to be in place  for the engine to run.  The object of the clip, which is attached to a short tether and snaps onto the driver's pants or vest, is to stop the engine if the driver goes into the drink because he's yanked the clip from the engine.

     For this run, Kevin tightened a screw in the throttle handle that disabled another safety feature.  This feature automatically engages a spring that returns the throttle to low idle speed when the handle is released just like a motorcycle throttle.

     As he sped along at top speed--15 to 18 m.p.h.--he changed course slightly. The swerve was minimal but that was enough to cause the boat, which has a dry weight without engine or seats of 65 pounds.  

     He was thrown unceremoniously and unexpectedly from the boat into 15 feet of water. In the condition he left it, the unmanned Porta Bote, like most motor boats, travels in circles.  He recovered enough in the water to see the boat bearing down on him head on.  

     As it was passing, he was able to grab hold and haul himself back into the boat and shut down the engine.  Without adrenaline and mental quickness, he could have been run down and likely  raked by the propeller.  Hence the working title of this post. 

     We have some new, (read "standard") rules now:

     1.  Any one driving the motor boat must wear a life jacket.

     2.  The emergency stop clip must be attached to the driver or his life jacket.

     3.  The driver must be aware that slight changes in course at high speed in this water craft can have big consequences.

                                      *     *     *     *

     LVADs can go boating and fishing but must take good care.  Disaster lurks because we are not waterproof.  If the electric power is interrupted, it might be our last gasp.  Tight lines, fly fishers.