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.

Biopsy Procedure is a Heart Transplant Necessity

The folks at the U of MN are making plans for my first "heartaversary" status visit.  It will include a biopsy and a series of other procedures and tests. The chances of rejection are ever present and life long.  The body has a one track approach to a "foreign organ":  kill it.

Everyone fortunate enough to receive an organ transplant is subject to having the organ--heart, kidneys, liver--attacked by the body's self-defense system. To even the odds for survival, cardiologists use a drug regimen that suppresses that self-defense or immune system.  But even with immuno-suppressant meds, the body still wants to annihilate the foreign organ.

A significant problem in the "rejection" arena is that the recipient of the gift of life doesn't feel a thing. There are likely no symptoms or pain.

One of the methods of determining whether a heart transplant recipient is rejecting the donated heart is to take some tissue samples from the organ and have a pathologist examine them under a microscope.

There are two types of rejection: acute cellular (most common) and humoral or vascular.

The pathologist can assess "rejection" by examining cells, looking for signs of the body attacking the new heart.  Typically, rejection occurs in the first few months after the transplant operation.  My "acute rejection" was detected after less than three months.  My episode of rejection lasted for a week. I'm told the treatment is high doses of Prednisone (a steroid) by IV for 72 hours.  The dosage for me was 1,000 mg per day and was administered in the hospital. 

The protocol at the U of Minnesota is to have regular biopsies during the first year on a set schedule with additions as necessary.  I think I'm over a dozen so far since last June 8, and there are three months left before my first "heartaversary".

For those who do not know about the procedure, here is what happens.

Typically for me, I report an hour before the scheduled procedure to the Cardiac Catheterization Lab. My vital signs are recorded and a nurse reviews all my medications with me.

The procedure is performed by a cardiologist under sterile conditions.  The whole area is painted (in this case blue) with a liquid that kills whatever is on my skin.  

Lidocaine, a topical anesthetic, is injected into my right neck area at the Jugular vein. A small cut is made in my neck to allow the cardiologist to insert a Swan-Ganz catheter into this large vein.

Pressures on the right side of the heart are measured to determine my heart's efficiency.  All pressures have been good so far.

Another catheter is guided through the Swan-Ganz into the right side of my heart.  This catheter has the capability to take tiny samples (usually four to six) of the heart tissue.  These are the samples that are examined to determine rejection.

The doctor uses X-ray and Doppler machines to guide the catheters  during the procedure which lasts about 20 minutes.

Once the pressures are assessed and the samples are taken, the doctor removes the catheters.  Pressure is applied to the wound site, the blue dye and I leave with a Bandaid.  Someone complained about the Snoopy Bandaids that were used for a long time after the procedure. 

They were among the first bandages to be latex free but were discontinued after the complaint.  This last time, a week ago, I asked for a Snoopy Bandaid, was told the lab didn't use them anymore, but the nurse obliged me by drawing a dog on my bandage before applying it to my neck.

There is another procedure called an Allomap used for testing for active rejection.  I may write about that later.  That's enough information unless you are a cardiology resident, right?

The tale of a fungus and other recent developments

Seven months since transplant: just returned from labs and testing for four days.

Two months after transplant, I developed pneumonia and was hospitalized to allow the U of MN cardio team to try to track down the cause.  I learned that there are a myriad varieties of pneumonia and, with a suppressed immune system, any one of those varieties can potentially do you in. Pneumonia impacts lung function.

Fortunately, the infectious disease specialists ran exhaustive tests and, based on their training and experience, determined that the culprit was likely a fungus. They could not say for certain what the fungus was but I learned later that the docs were correct. 

I was prescribed Voriconazole or VFend. Using that drug requires adjustments in the other immune suppressing drugs. VFend seems to magnify the potency of the two main drugs I take to keep my new heart from being rejected by my body.

The VFend began in late August and concluded last Friday.  Meanwhile, in October, I received word from the cardio team that the heart I received had a fungus infection, which caused my bout of pneumonia.  I didn't ask, 'how could this be?'  Instead, I accepted the problem and went on with the cure.

A CAT scan last week showed that the fungus nodule in my left lung was gone. The VFend could be discontinued and it was as of last Friday. Yippee Ki Yay and adios fungus.

One of the side effects of VFend is fluid retention in the extremities.   For me, that meant significantly swollen feet, ankles, calves and knees. There was no pain associated with the edema but it was uncomfortable and necessitated wrapping my lower legs with ACE bandages, and wearing compression stockings. Although the VFend was discontinued, I still have the swelling.  It is lessening day by day. A small price to pay for another chance at life.

Another issue I've been dealing with is steroid induced diabetes.  The Prednisone I take as part of the anti-rejection regimen of meds, can cause high blood sugar.  

That necessitates blood glucose  monitoring and the self-administration of insulin. Last week I met with an endocrinologist in Fargo.  He was reassuring that the high glucose levels would return to normal once Prednisone was discontinued.

Meanwhile, for U of MN heart transplant #788, the beat goes on.

My life at 9200 rpm's: Yippee Ki Yay... adios pus factor

Yippee Ki Yay, driveline infection.

I write with apologies to Johnny Mercer, fabled songwriter, and John McClane, fabled Bruce Willis good guy, who have used the cowboy phrase "Yippee Ki Yay."  

In Mercer's case, the phrase was followed by get along little doggies, it's your misfortune and none of my own.  In McClane's case, he was usually summoning the collective chutzpah of cowboy heroes like Roy Rogers and Matt Dillon, as they dispatched the villains.

This post bids farewell and good riddance to a pesky driveline site infection that is all but healed.  LVADs are susceptible to such scourges along with strokes, internal bleeding, clots in the pump itself, mechanical failures, and assorted other effects that are not of concern here.

I feel a bit like Snoopy as he does his supper dance around his dog dish. Some tap dance, ballet, or trapeze move seems appropriate, but that's problematic for my age group and fitness level. 

Anyway, it is something to note with cheeriness. I would use a profane epithet to bid the infection adieu, but bloggers have their sensibilities. At least I do in print.

To those who do not have an LVAD, you might ask:  what's the big deal?  You get an infection, you take antibiotics.  It's not rocket science. 

In the interests of understanding, I won't go there. To those who have an LVAD or know or care for one who has a mechanical circulatory support device, no explanation of a driveline infection fight is necessary.

If you look at a diagram of how the HeartMate II LVAD is placed in the body, you will see that the pump is attached to the heart and aorta. A line extends across the abdomen below the diaphragm from the pump itself to a site a few inches northwest of my naval.

The line, the "driveline," is a set of electrical wires encased in a bio-friendly, flexible sheath.  It exits the body in what is called the "driveline site."  From the driveline site, the driveline is attached to a controller unit, a 4x9x3 inch computerized brain center for the pump.  The controller is attached to the driveline via 18 inches of flexible plastic coated wire (multiple strand) and a secure connector that snaps and locks into place. Additionally, the controller is powered by two 14 volt LI batteries.  

The whole rig works as a unit, controlling the pump's operation, including its continuous flow at or near 9200 rpm's; hence the working moniker for this blog.  

The driveline site is the weakest point in the system because it is susceptible to damage and the cumulative effects of tugging, moving, shifting of the body during regular daily activities: tying shoes, reaching to an upper shelf, twisting, turning.  The worst is snagging the driveline on some immoveable object.  The object wins; the driveline site suffers.  

Most LVADs use some form of anchoring system to keep the driveline from being tugged or yanked.  The U of MN LVAD team adapted a flexible soft plastic anchoring system that was designed to hold a Foley catheter tube in place.  

Others use a stretchy elastic binder with Velcro tabs.  I used the binder system until the infection made it uncomfortable to have any pressure on the wound site.  Now I use and prefer the Foley catheter anchor.  It has the benefit of being secure and it adds no pressure to the driveline sited.

About December 5, 2012, my existence as an infection free LVAD ended.  I am fortunate that the infection stayed on the surface because infections can easily migrate along the driveline inside the body and lodge in or around the LVAD itself.  Surgeons create a pouch below the patient's heart to keep the HeartMate II in place.  The pouch can become infected.

If the infection progresses to that point, hospitalization follows.  One option, an expensive one in terms of equipment, surgical talent, and the toll on the LVAD recipient, is to replace the pump and driveline.  This is chest cracking, open heart surgery.  Not a walk in the park.

We LVADs are on the medical frontier, pioneers in many ways. Don't misunderstand me though because the life saving technology has only been around for a few years. Without it, end stage heart failure would have been the end for me in a matter of days or weeks.

When my pump was installed in April of 2010, the Mayo LVAD team said it was my only option. So on April 2, 2010, I became a pioneer.  Our online group calls itself LVAD Warriors.  We are all warriors.

The docs can guess about survival without the pump. But one thing is certain: our end stage (death is the next stage) heart failure would not react well to not having mechanical circulatory support.  In fact, I've been told that I would not last long at all if the pump failed. Is it minutes, or hours?  I don't know. That means reduced blood flow to all bodily systems.

I'm glad I don't have to go there. Semper Paratus.

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: 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.

     

My LVAD lifeat9200rpms: Eleven days at the head of the transplant list and counting

     I have been on the 1-A list for a heart transplant since July 20.  That is 11 days into a 30 day span that all persons listed for a heart transplant can avail themselves of.

     From my perspective, my LVAD is working quite well.  I don't wheeze, I can walk a couple of miles at a time, I can climb stairs.  My CHF is under control thanks to my pump.

     When I had my normal 90 day followup yesterday at the U of MN, my cardiologist and LVAD coordinator gave me positive reinforcement for my time as a 1-A.  Both said that while they could not predict what will happen, their experience tells them that  my time for a matching donor is fast approaching.

      The prospect of actually receiving the gift of a transplant is difficult to comprehend.  It is at once scary and there is an emotional elation aspect to the notion.  Hard to describe. 

      I've only been listed for transplant since last Halloween, a relatively period.  Even former VP Chaney was listed for more than 20 months before he received a heart.  There is no standardized measuring unit for average time on the list.

      I am not complaining.  I am content where I am.  I feel my attitude is good.  What will be, will be. But I am keeping my fingers crossed.



     

     I

     

LVAD Partners, Caregivers, Heroes

      In early April, two years ago, as I lay in St. Marys Hospital of Mayo Clinic in Rochester, MN, with a newly minted LVAD, I had no notion of exactly or even approximately what was happening.  Drugs will do that to you. 

      The wheezing was gone as was the shortness of breath.  I wasn't ready for a workout on the dreadmill. I'd get to that in due time.  I didn't know I couldn't walk.  But I was alive and didn't need to pinch myself to ensure I wasn't dreaming.

      I knew that implanting the tiny pump was open heart surgery.  I knew that but had no concept of the scope of the operation or its aftermath.   I did not know that I was bleeding near the LVAD and would have to be opened up twice more in the next 10 days for a tuneup.  The bleeding was stopped.  Third time is a charm, right?

     However, the Mayo team also had to deal with blood that seeped into my lung cavity. That was resolved without so-called "chest cracking" (a sternotomy, the term for the inline, vertical incision made along the sternum) using instruments that entered the plural cavity through my rib cage.

      My constant companion was at my side.  Call her my wife, my LVAD partner, my caregiver or what you will. She is the hero of this story.  For the patient, the role is essentially passive.  It was up to the surgeons, nurses, and others on the staff to install the heart assist device, the HeartMate II, and keep me alive. For the LVAD partner, the roller coaster of emotions is unfathomable if your not in her shoes.

     Open heart surgery is no walk in the park.  Who knew?  Not me.  I was so far out of it that I do not remember signing consent forms for each of the procedures.  My signature was shaky and crooked.  I would have consented to just about anything.

      For the LVAD partner, I can only imagine the level of anxiety propelled by the unknown.  Life or death hung in the balance.  I was out of it. Watching and waiting is mind numbing.  Nothing prepares one for the role of LVAD partner, particularly since I had a short decision making window.  It was less than a week between being life flighted to Rochester from Fargo and the implant operation.  Some recipients have weeks or months to make a decision.  The pump looked to me like something for the toilet plumbing but if it worked, I was ready.  Let's do it.

     It was a hell of a ride but I'm here to testify to the positive result.  Another wag said that every day above ground is worth it. The alternative is always there. 

     During the first two weeks after implant, I became vaguely aware of the medical team's morning rounds.  They seemed to appear from somewhere stage right like a Greek chorus, 10 or 12 of them, huddled in discussion outside my room.  Then two white coated team members came in and briefed me and Dolly on what was happening to me, my progress, if any, and the next step they planned to take.  Then the doctors retreated and the Greek chorus shuffled out of sight stage left.

     My LVAD partner, my wife Dolly, was there throughout all the days.  She was bedside taking notes on what the doctors said. She read to me and was there for me. She had a notebook to write thoughts and questions for the medical team.  I had no idea of what she was going through.  I've heard only some of it.  I know she's pleased with the result.

     Gradually in the hospital, I became aware that I was "tethered" to a machine by a cable.  It was the Power Module. Essentially the Power Module transforms regular current to the low level required to operate the LVAD.  Batteries by day; PM by night.

     At first I was unaware of the required bandage changing on the percutaneous (through the skin) lead site. The percutaneous lead or drive line required a dressing change using sterile procedures once a day.  The site was an open wound that eventually healed around the wire.  The wire carried power to the HeartMate II through a small computer system controller. The system controller has two other wires that connect to the batteries that power the pump.

     Before Dolly and I left the hospital six weeks later, we had learned how to care for the drive line site.  We learned so much more, including for me, how to walk and use stairs.

     I have a greater appreciation for the mantra attributed to the Navy commandos, the SEALs, of whom I have only a passing knowledge as a retired Navy captain. Their mantra:  the only easy day is yesterday.

     Experience shows that heroes often don't have a clue about what they have done and are doing.  They say they were just doing their jobs.  My LVAD partner is my personal hero.  I love you Dolly.