Best Wishes for all with Birthdays on July 4

I've got a special birthday to report but first a selective view of the events of the day.

As we know from elementary or high school history, the United States officially broke ties with Britain 238 years ago today. Unofficially, the separation brewed for a decade before the break. 

The fledgling nation struggled through a long war of independence, floundered under the Articles of Confederation, but eventually flourished into modern day America.  John Adams wrote to his wife on July 2, 1776 that Congress had approved a resolution to throw off the oppressive yoke of colonialism. Incidentally, Adams thought the celebration of independence should be on July 2

At any rate, King George III, on whose watch the freedom bell was rung, wrote in his diary of July 4, 1776, that nothing of significance happened today. Little did he know, right?   

It took a month for word of the Declaration of Independence to reach London.  It took four days for George Washington to get the word in New York from Philadelphia. For the year before July 4, 1776, Washington was managing the Army, ousting the British from Boston and moving down to New York.

There is another "birthday" to note.  My friend Peter Quimby received a new heart at Cedars Sinai Hospital in Los Angeles.  He's from the Minneapolis area but was urged by his cardio team at Abbott Northwestern Hospital to transfer to Cedars.  He waited a long time but the reward is obvious--the gift of life. I'm confident he will speedily recover and thrive. 

So best wishes to all with birthdays on July 4, starting with the United States of America and Peter Quimby for sure.

Annually for 40 some years a group of newspaper reporters, businessmen, and assorted raconteurs have met on or near the Mecan River in Central Wisconsin to mark the start of trout season. 

It's always the first Saturday in May, which sometimes conflicts with Mothers' Day weekend.  About 20 years ago, the group shifted from its Mecan River site to the South Fork of Wedde Creek.   It's a mile as the crow flies from the Mecan. I've attended many trout opener gatherings over the years.

I've been fly fishing for trout and bass for nearly 50 years and joined the group after the move to Wedde Creek. The point is that I was unable to attend last year because of complications with my LVAD.  

Little did I know that I would get a second chance at life with a new heart in early June, 2013. At any rate, son Kevin and I (now waterproof once more) are headed east 500 miles to join chums and colleagues.  The donated heart gave me that chance. 

Trout are no longer at the top of the list of opening weekend activities as most of us are in our 70s and up. The eldest is 86, but he still fishes. I wet a line but routinely get skunked. But the camaraderie is priceless.  Being outdoors along a trout stream is priceless. 

We have all learned, like Thoreau once said, "some men go fishing all their lives and never realize it is not the fish they are after."

As I get to my 11th month post heart transplant, I am more grateful than ever for the gift of life.

Eight months and counting: not at full throttle yet, noticing improvement

I'm not Polyannaish, but all things considered, I'm doing more and feeling better each day.  It is hard to accept that I'm eight months down range from transplant. But the calendar says so.  The good saga continues.

Dwelling on yesterday's problems, is a poor use of time, not to mention emotionally draining.  As Will Rogers once quipped,  "Don't let yesterday use up too much of today." That sums up an attitude that works.  Makes sense, but takes practice.

It's about minus 20 F. here in Detroit Lakes, Minnesota, as I survey the frozen lake tableau out the lakeside windows. It's a weekday, so the snow machines are quiet, the only evidence of them are the tracks. Being here is a significant plus.  There is no hustle and bustle.  I would not be here to experience peaceful nature in winter if not for the HeartMate II and my good fortune in receiving a transplant.

The only critters moving in this weather are the occasional rabbit, a murder of crows, and a few hawks, mostly red tailed hawks.  Whether the groundhog saw his shadow last week, is immaterial at this latitude.  There will be snow until late April at least.

I return to the U of MN next week for more tests. Kidneys are not filtering as well but no need for dialysis yet. 

Immuno-suppressive meds are still in the adjustment mode. Steroid induced diabetes is gradually moving toward the normal range. Overall, no complaints.  I continue to have swelling in the lower legs and feet.  Thigh high compression hose help. And the 10 minutes I spend wrangling them on is a little inconvenient but no bigee.

Continue to March: the best alternative for a new heart recipient

SITUATION REPORT:  I've been at the University of Minnesota Hospital, University of Minnesota Medical Center at Fairview off and on since January.  Until June 8, all in and outpatient visits were related to my HeartMate II, left ventricular assist device--a heart pump.  

Since June 8, when I received the fantastic, magnanimous life saving, life changing gift of a new heart, I have been going down an "unimproved road" and have hit a few bumps and washouts. 

The cardiology teams that follow me all consult and share their vast experience in solving emerging issues.  Heart transplant medical practice is more complex than I was ever aware.  A further wrinkle is that home is in Fargo, ND, some 250 miles from post-transplant care.

The most recent challenge for this heart transplant patient has been  the scientific pursuit of what was causing the fever and coughing.  The  doctors cultured every conceivable bodily fluid. After a number of days, the conclusion was that I had a fungus spore borne pneumonia.  The process of regulating and managing medications has been called titration.  Today the lab results showed that I was stable enough and in good enough medical condition to be discharged from the hospital, or stir in Cagney's lingo. 

I have come to believe that the best part of being discharged is being able to wave at the hospital in the rear view mirror:  Until next time.

My Life at 9200 rpm's: Hope for the weary heart

In keeping with my commitment to spread the word on the value of mechanical circulatory support devices, The University of Virginia Medical Center in the linked article below offers a snapshot of where matters stand. Left ventricular assist devices are becoming more abundant for congestive heart failure patients.  Simply put, LVADs work.

I've had my Thoratec HeartMate II LVAD for three years and a few days.  The company's website carries a note that some 13,000 HM II's have been implanted worldwide.  

Last year at this time the figure was 10,000.  Progress comes in increments, but 3,000 new pumps worldwide in a year is pretty significant.  Other manufacturers, of course, are not represented in the 13,000 figure.  The more pumps and pump owners the merrier, from my perspective.

Here is the link to the UVA cardiologist's post   http://www.dailyprogress.com/lifestyles/vital-signs-learn-the-facts-about-heart-failure-and-the/article_2001cbf6-98a4-11e2-8164-0019bb30f31a.html

I have continued on my LVAD journey these last few days as an inpatient at the University of Minnesota Medical Center.  I had some symptoms of a blood clot in my pump and a kidney infection to boot.  The infection was resolved with antibiotics.  The clot is another matter.

Since the pump is not susceptible to internal inspection while installed, the docs use a series of tests to confirm their clot theory. Meanwhile, the patient gets a continuing dose of heparin by IV, which is a strong anti-coagulant.  Heparin keeps the blood flowing, avoiding a stroke.

One option for a clot in the pump is to have another LVAD implanted.  Another option is a new heart.  Fortunately for me, another LVAD was ruled out "at this time."  A new heart is the eventual goal, but none is on the horizon.  

I've been on the UMMC heart transplant waiting list since Hallowe'en, 2011.  In that time, I've had two 'dry runs'.  The good news for me is that my HM II has allowed me to have a life awaiting a new heart.  For that I am grateful every day.

My Life at 9200 rpm's: My third LVAD-aversary and counting

April 2 marked my third LVAD birthday.  Thanks to the skillful folks at Mayo Clinic I got my life back 4-2-2010. There have been some bumps the in journey but three years downrange from implant is a victory in my book.

Since the implant, I transferred my care to the University of Minnesota, where I wait as a candidate on the heart transplant list.

In my internet wandering, I often visit Thoratec.com.  There and elsewhere I read what I can about congestive heart failure, not out of a sense of the macabre but to glean insight into this pernicious disease.

Thoratec's website linked to an account by The University of Michigan of a story about a woman who has had her LVAD since August, 2005.  Like mine, she has a HeartMate II.  She is thriving. 

Here is the link:  http://www.uofmhealth.org/news/archive/201303/meet-joeann-bivins-heart-failure-choir-singing-record-setter

My life at 9200 rpms: LVADs are hope, plain and simple.

I read a news story and saw the account of a San Diego area man, a former weightlifting champ, who wouldn't be here without an LVAD.  Like me, he suffered end stage heart failure.  After multiple stents and a major heart attack, he was out of options.

Donated hearts are at a premium.  The wait for a donor is long and there are no promises that a suitable heart will be found.  Enter the HeartMateII and other left ventricular assist devices. Without these medical mechanical circulation support devices, LVADs would succumb to end stage heart disease.

Paul Conway, the LVAD from south of San Diego, got his pump and has been waiting for a heart since 2010.  It has changed his life and outlook.  He and his wife and three daughters have enjoyed three additional years together and he is really pleased with having his life back.

Here is the link to his story:

http://www.kpbs.org/news/2013/jan/29/implantable-heart-pumps-are-keeping-beat/

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.

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

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: 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.

     

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.

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.

         

The fast lane: My lifeat9200rpms: D-Day -1

     "Bridge to transplant" or "Destination therapy."  Just a few years ago those terms were not in the lexicon let alone within the awareness of those suffering from congestive heart failure.

     Congestive heart failure is usually progressive and irreversible. In the recent past, within 10 years, a diagnosis of CHF was a terminal diagnosis.  A heart transplant was the only solution. Donor hearts are in short supply so the end was clear.  Without a transplant, the body's systems, particularly the kidneys and liver, began to fail. The end result was the end.  There were no alternatives.

     But the biomedical community stepped up, entered the fray, and developed mechanical circulatory support devices.  Thoratec Inc., of Pleasanton, California, invested blood, sweat, and tears into the design and perfection of the present left ventricular assist device.  I have one.  It works efficiently and effectively.  Since April 2, 2010, my HeartMate II, numbered 8358, has kept me alive and kept alive my quest for a new heart.

     In early 2010, The U.S. Food and Drug Administration approved Thoratec's HeartMate II (LVAD) as the only medically implantable device for both "bridge to transplant" and "destination therapy."  There are other LVAD's but only the HeartMate II has FDA approval. The approval came after lengthy, detailed testing, experimental studies, and human trials.  The testing, studies, and trials are ongoing with the aim of improving the LVAD.

     For example, no one knows for sure how long an LVAD will last.  One friend has had one for more than five years, without failure.

     From the examination of HeartMate II pumps recovered after heart transplants, I'm told that Thoratec investigators found that there was negligible wear on the ruby bearings in the pump.  Since the pump has one moving part, the life span of the bearings is a critical function.  Based on the wear and tear found on "used" LVADs, the bearings have an estimated life span of up to 65 years.

    So as I approach the final hours of my 1-A status on the transplant waiting list, I am confident that I'm going to last on my "bridge to transplant." Taking advantage of my head of the line position for 30 days, doesn't spell the end of the story. Without my LVAD, I'd have no confidence in the outcome.  With it I can enjoy life. 

My LVAD lifeat9200rpms: The 1-A countdown continues; Day 16 of 30 (brought to you courtesy of my LVAD

My LVAD lifeat9200rpms: Air Force Captain, a bank robber by day, a missile launch officer by night

     This is another in a series of recollections of my time as a trial lawyer.  It is made possible by my HeartMate II, left ventricular assist device, which was implanted 28 months ago to the day.  My LVAD, number 8358, was made by Thoratec Inc., of Pleasanton, CA. It has relieved my end stage congestive heart failure and has me going like the Ever Ready rabbit in the old commercials.  Thanks to my LVAD, I am awaiting a heart transplant on the waiting list at the University of Minnesota.

     In January of 1983, I was an Assistant U.S. Attorney for the District of North Dakota, having transferred from Chicago to Fargo  a year earlier.  1983 was memorable for two cases I helped prosecute: a U.S. Air Force captain stationed at Grand Forks AFB who robbed banks and the tax protester, anti-government Gordon Kahl, who shot and killed the U.S. Marshal and one of his deputies while wounding four other law men.

    Early in the month, the FBI and local authorities were investigating the daylight robbery of three banks around the air base.  My friend and colleague, FBI Special Agent Spencer Hellekson, who was assigned to the Grand Forks FBI office, was interviewed in a weak moment by a New York Times reporter who was writing a national wrap-up on unsolved bank robberies.  I say that he was interviewed in a "weak moment" because all agents unless authorized were anonymous and eschewed the press.

    Spence, frustrated at the lack of progress in solving the case, told The Times reporter, that the robber would be caught because "you can stand on the hood of a car and see all the way across North Dakota.  There is no where to hide."

     Well, Spence's quote made the paper but that's only half the story. Everyday the Director of the FBI is supplied a media briefing book of all mentions of the agency and The Times article was prominently displayed.  But Spence escaped censure by the Director for talking to the press.  It was no longer the era of J. Edgar Hoover.

     A fellow agent and friend of Spence's, who worked at FBI hq and had access to the briefing book, photo copied the article and sent it to the Grand Forks FBI office.

     The agent drew a caricature of Spence, standing on the hood of a bureau car with a spyglass to his eye.  His comment:  My Gawd Spence you made the New York Times and the directors briefing book.  Regards.

    The cartoon and back story provided a good laugh for those who knew what was going on.

     Within a few days, there was another bank robbery but the robber had the bad sense to rob the same bank a second time.  The teller recognized the robber because he wore a ski mask, a wool hunting shirt, looked portly, and carried a small semi-automatic pistol during the robbery.

     The robber didn't realize that, when word of the robbery circulated, an aroused populous might give chase.  That's exactly what happened.  Farmers in their pickups on the way to town and others gave chase. About two dozen local residents chased the robber in his white compact car.  They weren't in continuous pursuit but were on again off again in pursuit.  Sometimes the speeds got over 100 m.p.h. Police relied on tips from the public to pinpoint the robber's locations.
     
     Eventually, the white Dodge Omni darted into a Grand Forks motel parking lot just ahead of police and the FBI.  The driver was identified as Harold David Spruell, a captain in the United States Air Force stationed at Grand Forks Air Force Base.  He was a ballistic missile launch officer.

     Spruell was arrested.  In the car were the proceeds of the last robbery in a zippered overnight bag, which also contained a wool hunting shirt, a ski mask, and a bed sheet that Spruell had wrapped around his midsection to make him appear portly.  Also in the bag was a loaded Italian made .380 pistol.

     During Spruell's trial in U.S. District Court it developed that he had a game arcade business in the mall in Grand Forks that wasn't doing well financially.  The robbery proceeds were used in the business.  Also during the trial there was testimony that Spruell was an intercontinental ballistic missile launch officer entrusted with one of the two keys required to launch a nuclear missile from a silo deep in the ground of northeastern North Dakota.  

     The more surprising testimony was about the habit of those assigned to missile duty, who spent days underground, to use prescription drugs to remain alert and to go to sleep.  Officers from Strategic Air Command Headquarters in Nebraska attended every session of the trial and took notes.  National security implications were obvious.

     Spruell did not testify.  Another FBI agent, Ken Aldridge, who was based in Fargo, testified about Spruell's "do it yourself bank robbery kit" contained in the zippered overnight bag.

     Ken's wife was in the courtroom audience.  It was about 15 minutes before the trial typically recessed for the day and Aldridge was trying to clear the .380 to demonstrate that it was safe.  

     He was struggling to pull back the slide and was completely focused on operating the mechanism and was not watching where he was pointing the pistol.  Of course, the weapon was empty and safe and Ken did not recall that this weapon had to have the magazine inserted in the butt of the gun to allow the slide to operate.  He continued to struggle with it and the muzzle was weaving around pointed generally at U.S. District Court Judge Paul Benson, who was oblivious to the machinations.  

     But Ken's wife saw it all clearly and turned to her seat mate and said: "It looks like Ken is going to shoot the judge."   We all laughed when told about it later.

     As the prosecutor, I was powerless to help Ken through his dilemma.  I did the next best thing.  I asked for a short recess and the judge picked up on what was happening and paused, looked at the clock, and recessed the case until the next morning.  By that time, Ken was fully conversant with the workings of the Italian pistol and opened it flawlessly.

    Spruell was found guilty and sentenced to 10 years in prison.  When he was released from the prison in Atlanta, he robbed another bank, was arrested, tried, convicted, and sent back to prison for another 10 years.

     Spence was right.  There was no where for Spruell to run and no where to hide.  The case of the bank robber by day and missile launch officer by night was over.

My LVAD lifeat9200rpms: Early AUSA days and The Usual Motion

    This post is courtesy of my heart pump, a HeartMate II LVAD, which has supported me for nearly 28 months since I succumbed to end stage heart failure.  I was a goner but because of the LVAD, I'm still going.  My advice: never quit.

     I made a career change from reporter to lawyer in 1978.  I found that all the same skills I used in newspaper work transferred to legal and trial work.

     The U.S. Attorney for the Northern District of Illinois in 1978 was Thomas P. Sullivan.  Tom was always a criminal defense lawyer in Chicago and had a first rate reputation among lawyers and judges for three decades.  Somehow U.S. Sen. Adlai Stevenson convinced Sullivan to accept President Carter's nomination for the position of the top federal law enforcement officer for the eight million people in Chicago and the northern third of the state.

     I applied to the U.S. Attorney's Office in my last semester of law school at Loyola University of Chicago.  I was covering the federal beat for The Chicago Sun-Times newspaper at the time.  I covered that beat since 1972.  The federal beat, which many colleagues and I considered to be a plum assignment involved daily reporting on federal agencies, the trial and appellate courts and the U.S. Attorney's office.  I worked as the federal beat reporter during the administration of three U.S. Attorneys: Jim Thompson, Sam Skinner, and Tom Sullivan.   Thompson went on to be Illinois' governor, Skinner became U.S. Transportation Secretary, and Sullivan returned to his lucrative law practice as a partner at Jenner and Block.

   When it came time to decide what to do with my newly minted law degree, my choices were to wait in line and hope to eventually be assigned to Washington to cover the U.S. Supreme Court or to present cases in federal court as a prosecutor.  The line to cover the high court was long and unrealistic.  Equally unrealistic was the notion that I could become an assistant U.S. attorney.  I applied anyway and went through dozens of interviews with members of Sullivan's staff, knowing full well that one negative vote of the hiring team would likely be a death knell to my application.

     Eventually, I got a face to face meeting with Sullivan and his First Assistant, Greg Jones.  The conversation took an adversarial tone when Tom asked me whether I would tell my friends and colleagues in the media about cases in the USA's office.  "Can you keep your mouth shut," he asked.  My reply was succinct.  I said no.  I told him my clearance as a Naval Officer was likely higher than his, and that I was not applying to become a federal prosecutor to make it a revolving door.  My friends and colleagues had the integrity not to ask me for privileged information and I believed I had the integrity not to share it, I said.

     Sullivan asked me if I had talked to my wife about the job and its demands.  I said I had.  Sullivan said I would be making 20 to 25 per cent less as a new assistant U.S. attorney than I was as a reporter.  Could I accept that?  Yes I said.

    The office was about to undergo a hiring freeze, Sullivan said, so I had to start before the end of the fiscal year, which ended September 30, 1978.

     I talked to my wife and accepted the offer.  I had yet to take and pass the Illinois Bar Examination.  No matter, Sullivan said, I would start as a Department of Justice law clerk and await the results of the bar exam.

     TPS, as he was referred to, hired me and five other 1978 law graduates without any of us having a law license.  We were all awaiting bar results, which were not due until late October.  We all passed and were sworn in as new lawyers in early November at McCormick Place on the Lakefront.  Tom orchestrated a swearing in for all six of us before the Chief Judge of the District Court, James Parsons.  Tom commented on the record during the swearing in oath of office proceeding that he would never again hire any lawyer who hadn't been admitted to practice. Too risky given the hiring freeze. He said he breathed a heavy sigh when he got word that all of us had passed the bar exam.

     In the weeks between starting as a clerk and being sworn in as an AUSA, all of us prepared briefs of cases on appeal to the Seventh Circuit U.S. Court of Appeals.  The Seventh Circuit was housed on the 27th floor of the Dirksen Federal Building and Court  House, 12 floors above the U.S. Attorney's Office.  None of the six prospective AUSAs had a case load and none of us could appear in court.  But we did have the chance to argue before the Appeals Court the cases we'd briefed, if we passed the bar and were admitted to practice before oral arguments were scheduled to take place.

     Once I was "legal" so to speak as an AUSA, I received a case load in the Criminal Receiving and Appellate Division.  One of the  assignments was covering rotating duty days, processing new cases, arrests, and search warrants for the federal law enforcement agencies:  FBI, Secret Service, Postal Inspectors, and the DEA among others.

     On my first duty day I handled the case of two men charged by Postal Inspectors with stealing mail from a letter carrier.  For some reason, the two accused were given summonses to appear before a federal magistrate.  At the scheduled time, I appeared before U.S. Magistrate James Balog.  Two lawyers, appointed by the court to represent the accused, appeared as well. But the accused were absent.

     I had been in Balog's court as a reporter for many cases over six years in the federal building.  We knew each other at work and had been together a few times socially.

     Balog saved my bacon that day.  His clerk called the case of the accused mail thieves and the lawyers stepped up and introduced themselves.  Their clients were absent.  The defense lawyers said they had spoken with their clients earlier that day and reminded them that it was important to be prompt for their court appearance.

     The magistrate looked over at me and I suddenly was struck dumb.  What I should have said was, "Your Honor, I move for the court to issue bench warrants for the arrest of the defendants."  Instead I stood for a very long minute.

     At last I got my mind in gear enough to say:  "The usual motion, Your Honor."

     Bang bang went his gavel as though he were awaiting any small hint from me of what the usual procedure should be. "The usual motion, your Honor" was enough for Balog to launch into a litany of the facts leading to this point and the issuance of bench warrants for the arrest of the no shows.

     I waited for the courtroom to clear and left.  I entered Balog's outer office and spoke with his secretary who ushered me into chambers.  There I thanked Balog for his quickness in covering for my rookie memory failure.  "No thanks necessary," he said, "it happens to all of us.  I'm glad I was there to help."





     

Lifeat9200rpms: Illinois Central Train Crash

     This reminiscence is made possible by my 27 month old HeartMate II LVAD, without which I would not be alive.

     At the time of this account, October, 1972, I had been the federal building beat reporter for the Chicago Sun-Times newspaper for about a month.  When I walked into the federal building press room, I turned on a radio I kept to catch the 8 a.m. news summary. 

     Instead of a news briefing, I heard a report on a commuter rail crash with many injured and killed.  It developed that this crash, which was the worst in Chicago’s history, occurred during the morning "rush hour" on October 30, 1972.

     It was early morning and I called the city desk to volunteer to go to the scene.  Basil Talbot, an assistant city editor, was in the slot and told me to go ahead to the scene.  I did not know that I would be the only Sun-Times reporter covering the crash for the rest of the morning. Another reporter, Paul Galloway, was sent out about noon. 

     I took a cab to the closest IC station, which was at 27^th Street, and went down to the platform. Chaos ensued.  Illinois Central Gulf commuter train 416, composed of newly purchased double decked passenger cars called Highliners, overshot the IC station at  on 27th Street between the Lake Shore Drive roughly Cottage Grove.  

     There are many rail tracks in the two block wide area.  Commuter tracks were on the western side. Later the Illinois Central Gulf commuter trains became what is now known as Metra.


     Train 416's engineer followed protocol and the chain of command and asked and received permission from the 416's conductor to back the 416 to the platform. This move was the made without the flag protection required by the railroad's rules.


     Unfortunately, Train 416 had cleared automatic block signals, which are intended to alert following trains that the coast is clear. Because Train 416 overshot the station platform and cleared the block signals, the way was "cleared" for an express train, Train 720 to move through the station without slowing.  

     Train 720 was composed of more heavily constructed single level cars, which would rip through Train 416's thin metal skin.  Train 720's engineer was unaware of the dilemma 416 presented and 720 continued at full speed on the same track. 

     The engineer of the express train did not see the bilevel train backing until it was too late. When the trains collided, the front car of the express train demolished the rear car of the bilevel train.  Train 720 sheared the last car of Train 416 and did not come to rest until it plowed through successive cars.

     In all 45 people were killed and 332 persons were injured.  After the accident, the ends of all commuter rail cars and locomotives in the Chicago area were painted with orange and  white stripes for better visibility.  But that day the rear of  Train 416 was unmarked.

     I arrived on at the 27th Street station on Chicago's near south side. There were many firemen and police present.  In addition there were teams of doctors and nurses from Michael Reese Hospital and Mercy Hospital, which are both within a few blocks of the crash site.

    The scene was chaotic.  I found the highest ranking fireman, a division chief, and stuck to his side until I could grasp the scope of the disaster.  No one knew how many were dead or injured. There was no central place to get solid information.  

     No one was overall in charge that I could see but the Chief was making his best effort.  Meanwhile, the medical teams began moving through the cars of both Train 416 and Train 720.

    I got in line behind one of the medical teams from Michael Reese and went through one of the 416 cars.  It looked like a slaughterhouse scene: moaning, bloody, unfathomable.  In my time as a reporter I never saw anything like it and hope I never will.  The teams were going through a triage assessment of the injured and inert bodies, some of which were alive but unconscious. Some of the team started IV drips in the injured.  Others ran back to the hospital ER for supplies.  Communications were non-existent among the medical staff.  They didn't have radios and cell phones were some years away.

     Triage, as I understood it, was the method of determining who needed medical help immediately to safe a life, who was next most seriously injured, and who was either dead or so close to dying that they were listed as hopeless. I had no practical experience with a tragedy of this proportion and had no experience with the concept of triage.

     About 10 a.m. the Tribune's mobile city desk arrived at track level.  The mobile city desk was housed in a bus with writing and phone accommodations for 15 to 20 reporters.  It had a teletype link to the actual city desk.  A marvel to behold.  The problem was that I was doing pretty well surrounding the story solo and the 20 Trib reporters began stumbling over each other and duplicating each other's work.  

     A mobile city desk is a good idea, but someone needs to be in charge to divvy up the story.  My solo reporting had me overwhelmed with what to do next so I did a sample of every facet I could think of.  I called the city desk immediately after I arrived.  There were still pay telephones at the time. I had to go a block of so to find one.  My communications with the paper were stretched to an hour.  When I finally  saw Galloway, I got to a phone and unloaded all the information I had gathered to two rewrite men.

   Then I went back to work.  By this time, just after the lunch hour, the medical people and fire department had run out of body bags.  Plastic bag substitutes were used, including zip lock type bags for body parts.  As gross as that sounds, it was necessary under the circumstances.  I have to admit, I lost my lunch a couple of times that day.

     The last person rescued was the engineer of the following train, number 720.  He was trapped in the operating compartment of his train and had to be helped with the aid of metal saws, jacks, and a cutting torch.  The jaws of life were in development.

      

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.

      

Second 'heart-iversary"

The LVAD Coordinators and cardio team at the U of MN sent me a birthday card for my second Heart-iversary. I was pleased to get it.  Thank you. 

HeartMate II #8358 is functioning as designed.  Implanted April 2, 2010. This episodic narrative, misspellings and all, is about life from the LVAD recipient's perspective. 

My son and I went fly fishing Sunday night on Detroit Lakes 50 miles east of Fargo.  We caught a few small mouth bass, sunfish and some rock bass during the witching hour just before nightfall.

I am not the first to add my $0.02 to the hopeful news and views about the miracle pump that keeps me alive.  Thanks to Michael Joshua Morris for his inspirational efforts in his blog:  From the Bottom of My LVAD.