My Life at 9200 rpm's: Who gets an LVAD?

I came across an on line article concerning the selection of candidates for LVADs.  How do you get one? Who decides?  What are the criteria?

Do you have to be at death's door before you can get one?

Here is the article from the online Journal of the American College of Cardiology that discusses what goes into the mix in making the decision.  http://content.onlinejacc.org/article.aspx?articleid=1555246

As noted before in these narratives, the ranks of sufferers with congestive heart failure swell by approximately 500,000 Americans a year.  Some 300,000 succumb to the disease. 

One point the JACC article made is that LVADs are gaining on the "gold standard" heart transplant, enabling surgeons and cardiologists to save more lives.  There simply are not enough donor hearts available.  But LVADs, while costly, are the best mechanical circulation support therapy available in 2013.

There is a bar graph showing the number of heart transplants per year for several years remains relatively stable while LVADs are being implanted at a growing rate.  The number of available donor hearts has remained in the 2,200 plus range for the last five years.  
LVADs have been implanted at a growing rate over the same period. At the rate LVADs are being implanted, the number will surpass the number of heart transplants quite soon.  I take from this that more people are being saved by LVAD therapy and technology.

I

   tried

            to include

                             a graphic

                                           from the article.

                                                                     But positioning proved

                                                                             a challenge.


                           (See below).

                          

 The figure at the right is from the JACC article and shows the increase in LVAD use from 2006 to 2010, the last year for which information was available.  The article has many other aspects,  I chose to focus on this one.

         

My life at 9200 rpm's: Congestive Heart failure LVAD therapies are available around the globe

As I was looking around the LVAD blog arena, I found a presentation from a Singapore hospital's account of congestive heart failure.  The narrative was on a fellow bloggers site but I felt no compunction in appropriating it for a wider readership.  

After all, the bigger the audience, the more the word will spread. Here's the link:  http://mountelizabeth.com.sg/en/Facilities-Services/Specialties-and-Specialised-Services/Heart-Failure-and-LVAD

I have been told that the folks at HeartWare cover more of the world outside the United States.  Their LVAD is smaller than my HeartMate II.  The associated gear is more compact and lighter to carry.

At any rate, the link above is for a hospital in Singapore, the former British possession at the southern tip of the Malay Peninsula. The point is that those who may benefit from mechanical circulatory support therapy can get it worldwide.

Read and spread the word.  There is help for those suffering CHF.  Drugs can help until the disease progresses too far. The recourse for those in end stage heart failure is either an LVAD or a heart transplant.  

But since the number of donor hearts is limited, the best hope is an LVAD.  Not everyone is an acceptable candidate for the device.  Pass the word that LVADs work.  I am symptom free and living life so I endorse the therapy unreservedly.

My life at 9200 rpm's: LVAD driveline infection situation report

For the last five weeks, I have been fighting a driveline site infection.  From reviews of the infected area by the LVAD support team at the University of Minnesota, the situation is being managed well with appropriate medication and site care, specifically dressing the wound.

All LVADs are susceptible to driveline infections. I'm told they are the most common complication after implant.  There is no definitive explanation of why after 32 months of not having an infection, one cropped up.  Fortunately, the infection seems to have been localized at the driveline site in my abdomen where the electric cable connecting the HeartMate II pump with the computerized controller I carry on my belt.  

The driveline site is maintained using sterile wound cleaning and dressing procedures. An unexpected tug on the driveline can cause a break in the driveline site seal and let infection start.  Mine was localized. The danger is that the infection can be carried along the driveline to the pump itself and to the pocket under the heart where the LVAD is placed.  

One possible explanation discussed with cardiologists and associated LVAD team members was the immune system suppressing drugs and substantial amount of steroids that were given to me when I was awaiting a heart transplant.  

I literally was at the threshold of the operating room, prepped and ready to go, when the transplant operation was canceled. I was told the heart was not the match the doctors wanted for me.  Meanwhile, those powerful drugs immune suppressing and anti-rejection drugs I was given pre-op could have caused a dip in my immune system enough to create the right circumstances for a driveline infection to get started. 

None of that really matters in the final analysis because I'm doing so much better and am on the mend.  Infections happen:  deal with them.  It was also a good sign that the doctors said the infection was localized. None of my medical team ordered a CAT scan of the area, and from this I conclude that the infection is at the site only.  That's good for me.

LVADs undergo a right heart catheterization each year. I was three months overdo and so the procedure was done during my U of MN visit.  It is done in an operating room. After prep with local anesthetic, an incision is made in my jugular vein and a catheter is inserted through the vein and into my heart.  

The catheter is a spaghetti-thin tube that   allows the doctor to measure pressures in the heart and lungs. A contrast agent illuminates x-rays of the area to aid in the assessment. I got a good report and a stiff neck from the 50 minute procedure because I had to look sharply to my left and hold the pose for most of the time.  

Pressures were normal and I was told that my heart is squeezing harder than it did the last time it was checked.  But that doesn't mean I get to have the pump removed.  It's with me until I get a new heart.

Later in the day, silver nitrate was applied to part of the infection site to cauterize the area.  The chemical burns the newly forming skin, creating scar tissue, which is tougher than the "friable" newly grown skin. Friable means fragile and crumbly. Hence, easy to disturb its surface.

A day later I could tell the difference because the infection site was less tender to the touch.  Today, I'm back to wearing a 5.1.1 Tactical holster shirt to carry my batteries.  The shirt is far better than the shoulder holsters I wore for the past few weeks. Also the shirt has spandex in it, which supports my bandages.  Usually, I use an elastic binder to keep the bandages in place.  

The binder also permits me to stabilize my driveline using velcro tabs to hold it in place.  However, I now have a different anchoring system that uses  an adhesive strip and a plastic clip, like a reusable zip tie, to secure the driveline.  The anchor system was made for securing a Foley catheter in place but it serves well for this adaptation. This is the first time since April 2, 2010 that I haven't used a binder.  The sense of freedom is great.

In all, this 90 day LVAD checkup was positive reinforcement for me.  The journey continues.

Life at 9200rpms: Raquel Welch: A Case of Mistaken Identity

     This post is another in a series of recollections from my time as an assistant U.S. attorney.  This entry is made possible by my Thoratec manufactured HeartMate II, LVAD, number 8358, which has kept me alive since April 2, 2010.  I am on a heart transplant waiting list at the University of Minnesota.

     The case at hand involved charges of rape against two young men from what was then called the Devils Lake Sioux Indian Reservation.  It is now the Spirit Lake Indian Reservation.  From the government's perspective, the evidence was straightforward and convincing.  

     Both men were scheduled to change their pleas to guilty but at the last minute they balked.  The judge set the case for the following week and ruled that each defendant would be tried separately.  That meant that all of the witnesses would have to testify in both trials.  For the victim, it meant a double dose of stress from having to recount the incident for two separate juries over a week long period.  
  
  The reason the case was in federal court was because the federal government had jurisdiction. Jurisdiction was based on the federal Major Crimes Act, which provided that crimes against Native American Indians involving Indians as the accused can be tried in U.S. District Court.  This case was assigned for the trial to the Grand Forks quadrant of North Dakota because the Indian Reservation is located in the northeast quarter of the state.

     The accused were Daniel Stacey Makesgood and Clayton (Stubby) Dubois, both about 19 years old.  Makesgood was tried first.  The victim was about the same age.  Drinking was involved. All had been high school classmates.

     Makesgood was found guilty by the jury and his case was set for sentencing.

     As Dubois' trial proceeded, his lawyer, H. Holland Galloway,  Holly to friends and acquaintances, called his client to testify in his own defense.  Consent was the issue.  Did the victim consent to having sex with him?

    Galloway, who was not the most capable criminal defense lawyer, caused a stir when he misidentified the victim in his questioning.  He referred to her as Racquel Welch, the well known celebrity, sex symbol, and movie actress.  Ms. Welch once appeared in a movie wearing an animal skin bikini for the British- release movie One Million Years B.C. in 1966. 

     Of course Ms. Welch was not the victim's name--not even close.

    I objected without saying  why and the trial judge, Paul Benson, summoned the lawyers to the bench. I didn't have to spell out what the basis for my objection was.  The judge took up the cudgels and Galloway got a lecture and was ordered to continue his examination.  

     The very next question contained the name Racquel Welch. At another sidebar at the bench and out of the hearing of the jury, Judge Benson lectured Galloway again.   The judge said, "Mr. Galloway, there is no witness in this case by that name.  The victim's name is XYZ, not Racquel Welch."  In essence, the judge said, get your act together.

     The entire courtroom was in disbelief when Galloway misnamed the victim a third time.  I thought the judge would hold the lawyer in contempt, he was that upset.  This time at the bench when Judge Benson said again what Galloway had done, Galloway clapped his open hand to his forehead.  The slap sounded like a muffled pistol shot.  

     I glanced at the jury as Galloway made his move.  The panel knew exactly what was happening and Galloway knew the jury knew.  Embarrassment does not begin to describe what he must have felt.

   Galloway finished his examination and I began my cross.  I wanted to say:  "Mr. Dubois, you didn't. have sex with Racquel Welch did you?"  I wanted to add but "you would have liked to, wouldn't you."  I kept my mouth shut on the point and generally chewed up Dubois.  Makesgood had testified that he heard the victim's cries for help and his response was to turn up the volume on the radio to drown her out.  

     The second jury found Dubois guilty.  One the day of sentencing, Galloway slunk into the courtroom. The sting he must have felt had lingered.  He made a perfunctory argument concerning sentencing. When the hearing was over, Galloway beat feet for the exit.  He never stopped to talk with his client.  I never saw him in federal court again.  Just as well.

     The judge sentenced each of the defendants to eight years in prison.  They never appealed.  I learned that Galloway went back to his mostly office law practice.  He was the lawyer for the Grand Forks water board.  Fitting, I'd say.

     

     

Lifeat9200rpms: How Harry Golden Jr. "shot his dog"

       
     This is another in an occasional series of entries made possible by my mechanical circulatory support system, an LVAD.  LVAD stands for left ventricular assist device.  My LVAD was perfected and manufactured to relieve symptoms of end stage congestive heart failure.  My thanks again to Thoratec Corp. for my HeartMate II.  I have owned mine, number 8358, since April 2, 2010.  So far, 10,000 HeartMate II's have been implanted.  

     As background, I worked at the Chicago Sun-Times newspaper beginning in 1963, first as a copy boy and later as an editorial assistant.  I was in college at the time and finished a degree in English literature in 1966.  My intention was to teach high school English.

     As graduation approached, I changed paths and decided I wanted to be a newspaper reporter.  Jim Hoge, the paper's editor said I had two choices:  get some experience on a smaller paper for several years or pursue a master's in journalism.  

      I chose the latter path and applied to Northwestern University's Medill School of Journalism.  I began work on the degree in 1966 and with interruptions obtained an Master of Science in Journalism in 1968.  But half way through I launched as a general assignment reporter in June, 1967.  

     Among my first assignments was to attach myself to beat reporters around the city:  federal building, city hall, criminal courts, State of Illinois building and the like.  I landed first in the press room of City Hall, in the hay days of the first Mayor Daley, Richard J. Daley.

     The Hall was covered for The Sun-Times by Harry Golden Jr.  Golden came from a Detroit paper as the replacement for Frank Sullivan, whom Mayor Daley made into his press agent.  Golden was a colorful (meaning irreverent among other things), experienced reporter with a distinctive New York accent, and two closets full of sport coats.  

      He must have owned more than a hundred coats, ranging from standard Navy blazers to brightly colored numbers that you might see at the race track. He could dress in a different outfit every day for at least six months.  And, while he was small in stature, he strutted like he owned the place.

     From my perspective, Harry was a throwback to the Front Page days of rough and tumble Chicago style reporting of the 1920's.  He was fast, accurate, and always had a story that he held back to blow the competition out of the water.  "Always keep a story in your back pocket," he advised, "for a rainy day." 

     Harry eventually became the dean of the City Hall press room.  When he started, the Hall was covered by the City News Bureau, Chicago Tribune, Chicago Daily News, and Chicago American which was later changed to Chicago Today.   During Harry's tenure some of the faces changed and the Mayor remained the same until he died in 1977.

     I showed up in the Hall press room and listened to the reporters banter for an hour before the Mayor's press conference.  We attended the gathering.  I took notes and Harry asked questions. 

      We returned to the press room and Harry called the city desk to  alert the assistant city editor that he had a Daley story.  Harry used an old Underwood manual typewriter all the time I knew him.  He never transitioned to a computer.  He generally lit a Lucky Strike, inhaled deeply, made a couple of sarcastic comments and poised to write his story, usually the lead paragraph and an outline of the rest of the piece that he would dictate.  His typing style was animated to say the least.  He pounded the typewriter, hands held high, and used a finger or two from each hand.  He talked as he typed.  If it didn't sound right, he kept at it until it sounded right.

    Golden talked as he wrote, sounding out his words, emphasizing some and striking through others that did not have the snap he wanted.  Typically he wrapped one leg around the other and his typing style was two fingered, using his index fingers.  He squinted through a cloud of smoke as he typed.

       He told me that the lead paragraph had to have a teaser that hooked the reader into the story.  "Keep it short--2 1/2 lines--or no more than 20 words," he said more than once during my internship at the Hall.

     This day he finished his Lucky and lit another as he reached back over his shoulder to a lower desk drawer and drew out a brown paper bag containing a pint of whiskey, Jim Beam.  Still talking to himself, he uncapped the bottle and poured a good shot into his coffee cup.  

     Harry was not paying close attention when he returned the bottle to the drawer.  It slipped from his hand and you could hear the bottle breaking inside the brown bag as it hit the tile floor. It was a muffled but unmistakable sound.

     He knew immediately his predicament.  "Goddamn," he said, "shot my dog."

     Without missing a beat he pulled a couple of bills out of his pocket and sent me across the street to a liquor store to replenish his "dog."

      Harry and the other regulars did a story, actually it was a continuing series, on Mayor Daley giving the city's significant insurance business to an Evanston insurance firm that just happened to employ his sons, Bill and the future mayor, Richard M. Daley.  "What's a man to do if he can't help his family?" the Mayor told reporters.

      At one point, in exasperation, the Mayor said that he would make his explanation at "the appropriate time."   

     "Meanwhile, if you don't like it, you can kiss the mistletoe hanging beneath my coat tails,"  his honor said.

     Golden relentlessly pressed the Mayor every chance he got to explain how the millions of dollars in city business went to Heil and Heil in Evanston.   No explanation was ever made.

     After Mayor Daley died of a heart attack, his body was laid out in an open casket in the area of the ground floor of the combined City Hall and Cook County Building.  Tens of thousands of Chicagoans passed by to pay their last respects to Daley.

     The press room crew of reporters came as a group.  My friend, Bob Davis, a Tribune reporter recounted Harry's next steps. Harry, who was Jewish, approached the casket, he knelt, made the sign of the cross and in a stage whisper said, "Is it time Mr. Mayor?  Is it time now?"



  





     

Lifeat9200rpms: Skokie, Frank Collin-Cohen and the ACLU

      This is another in an occasional series of entries made possible by my mechanical circulatory support system, my LVAD, without which I would have been toast by now. 

     As I was about to finish law school at Loyola in Chicago, I worked days as a newspaper reporter covering the federal courts and agencies for the Chicago Sun-Times.  The year was 1977.

     Frank Collin, who was 33 at the time, was the leader of the National Socialist Party of America, formerly the American Nazi Party.  I was surprised to learn that Collin is still around. He is an author and self proclaimed witch, who served three years of a seven year Illinois prison sentence for child molesting. The criminal charges led to his ouster as head of the NSPA Collin was born Francis Joseph Cohen in November, 1944. 

     No one knew he was Jewish when he made his Nazi speeches, or led the NSPA.  That information was not something he willingly shared. In fact, Collin called his father a liar, when the elder Collin talked to a United Press International reporter about being Jewish and a Dachau death camp survivor, originally named Cohen.  Information suggesting Collin's Jewish ancestry was first published in 1970.  

     Collin gave a series of neo-Nazi "political" speeches in Chicago area parks and led demonstrations, including one in suburban Riverside. The creed he espoused was anti-black, antisemitic and anti-just about everything.  Chicago banned him from its parks.  He looked for another target.  

     He wanted to make a statement with his swastika bearing, brown shirted, jack booted, rag-tag irregular band of misfits and drew a bead on Skokie, Illinois.  Skokie is a near north suburb of Chicago that was home to the largest population of Nazi death camp survivors. Collin wanted to hold his demonstration on July 4, 1978.

     There were about 70,000 residents in the suburb in 1974, about 45,000 of them were Holocaust survivors or descendants of those sent to the camps.  You can imagine the intensity of the emotional climate surrounding a neo-Nazi demonstration under such circumstances.

     Skokie leaders refused to go quietly about their business and let Collin and his neo-Nazi band parade in their quiet village.  City leaders adopted several ordinances, essentially banning the Nazis from marching.  The laws were couched in the form of a parade permit ordinance, no parading in uniform bearing swastikas, and requiring a bond to indemnify the village against property damage.

     Collin and his Nazis could not get a permit and could not buy insurance.  In essence, Skokie had stalemated them. But would the village's ordinances withstand First Amendment analysis?

     Enter the American Civil Liberties Union and its main lawyer in Chicago, David Goldberger, himself Jewish.  The ACLU took on Collin's case because Skokie's anti-Nazi laws were an affront to the First Amendment of the U.S. Constitution.  

     Goldberger was criticized by the Jewish Defense League and Jewish War Veterans among other groups.  The ACLU in Chicago reportedly lost financial support and members as a result of the representation of Collin.  Two years after the neo-Nazi case, Goldberger became a professor of law at the Ohio State University's Moritz School of Law.

     Francis Joseph Cohen, then known as Frank Collin, came to the attention of the federal building press corps when he decided to lead a demonstration in Skokie, Illinois.  He threatened to march with or without a permit.  The ACLU filed suit against Skokie claiming violations of the First Amendment's guarantee of free speech and the right to assemble as applied to the state's through the Fourteenth Amendment.

     The case was one of those that underscores the need to protect the rights of us all whether we like those asserting the right or their message.  Justice Oliver Wendell Holmes maintained that we must defend "even the thought we hate." 

     U.S. District Court Judge Bernard M. Decker held a trial on the lawsuit December 2, 1977.  The following February, Judge Decker issued his opinion, holding all of Skokie's anti-parade laws unconstitutional. 

     Decker said, "The ability of American society to tolerate the advocacy even of the hateful doctrines espoused by the plaintiffs without abandoning its commitment to freedom of speech and assembly is perhaps the best protection we have against the establishment of any Nazi‑type regime in this country."  He was affirmed on appeal up to the Supreme Court of the United States.

      In the end, after some negotiations with the U.S. Department of Justice and Chicago and Skokie leaders, Collin and his motley crew abandoned the Skokie demonstration and instead marched on the federal post office plaza below an Alexander Calder sculpture,  entitled Flamingo, 53 feet high, some 60 feet long and some 20 feet wide, that dominated the plaza.  Pyrotechnics with no flash and no bang but a whimper under a flamingo. The compromise was good because it saved injuries, if not lives.  Skokie's anxiety was normalized.  I attended the Collin demonstration. There were about a dozen demonstrators, no counter demonstrators, no violence, and police made no arrests.  The First Amendment lives.