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.

Six months downrange from transplant: it seems like yesterday

June 8, 2013 was the day/night I hung up my LVAD and lost my bionic blood flow.  The HeartMate II LVAD kept me going for 38 months until a suitable donor heart could be found.  That is a miracle all by itself.  I had a few weeks to live in April, 2010, when the pump was implanted. 

It saved my life and I am grateful that the LVAD permitted me to wait and to receive a new heart.
Just in case, while I was at St. Mary's Hospital at Mayo Clinic, I wrote my obit.  That is harder than you might think.  It is what is called "a hold for release" obit, written in advance of the final event.

As my 30th month of LVAD living came, so did a driveline site infection.  The infection never completely healed.  At about 33 months after LVAD implant, clots began to develop in the pump.  The solution was to increase anti-coagulants.  The alternative was to exchange the HeartMate II.  The cardio team at the U of Minnesota opted for increasing anti-coagulant therapy.  Replacing the pump posed the risk of developing significant anti-bodies based on the transfusions needed for the operation.  More anti-bodies did not bode well for the likelihood of finding a donor heart match. The fewer significant anti-bodies a potential recipient has, the better chance for a donor match.

After the 38 months, I match was found and I'm here, upright and thriving.  There are some pitfalls. The one I deal with daily, for example, is the combination of drugs I take to minimize/manage potential rejection of the new heart by my immune system.  Getting the levels of the drugs in balance is a persistent pharmacological test for the cardio team.  It can take up to a year to get them in balance.

While the U.S. Food and Drug Administration has approved the HeartMate II for both "destination (no chance for transplant) therapy" and "bridge (transplant listed) therapy," some problems have developed in the clotting arena.  A recent study published in the on-line version of the New England Journal of Medicine showed that clotting in LVADS was occurring sooner than the initial trials disclosed.  Here is a link to the article http://www.medscape.com/viewarticle/815186.

The suspected causes of the clotting are the continuous flow of the LVAD, which can cause red blood cells to shear into pieces that can form clots, and the heat generated by the pump can cause clotting issues.

As I said, I am thankful for the miracle of medical technology that gave me three years to wait for a heart.  I am also thankful that I am no longer bionic.

Please remember those in need and become an organ donor.  Your gift could save a life.

My Life at 9200 rpm's: What they carry

Not to put too fine a point on it, but my life was essentially over three years ago.  I was 65 and had end stage congestive heart failure.  

That means things were not going to get better but could only get worse. Then the savvy doctors working with me had a great notion: a left ventricular assist device might help.  And it did.  With it came new skills and responsibilities.

When I was implanted with a HeartMate II April 2, 2010, I was taught how to care for and carry my equipment.  And reminded never to leave home without my backup equipment. It could save your life, I was told.  It reminded me of boot camp mantra never be separated from your rifle.  You can't do your job without your gear. Some of the gear, the guts, is inside you, namely the LVAD.

But the other equipment is mostly visible: a battery under each arm with a wire protruding from one end, a fanny pack worn at belt level containing the computer that runs the show, and the battery wires that run to the computer.  Finally, the signature black equipment bag that holds spare batteries and such.

The gear isn't very heavy but it is a tad cumbersome because it's with you all the time.

The controller, the brains of the LVAD, weighs a couple of pounds. In addition, my batteries, that clip into battery cases, which in turn are attached by cables to the controller, weigh a couple of pounds each. 

The controller is your constant companion when you have an LVAD.  I don't remove the controller from my waist to sleep, but loosen the belt.  Instead of batteries, the sleep regimen involves an 18 foot long tether with connections to a power module plugged into an outlet. The tether fortunately reaches the bathroom.

The HeartMate II system depends on redundancy. The controller actually contains its own backup computer. But each LVAD owner carries a backup controller, two batteries with their clip connections, and miscellaneous spare medicine. Everything fits into a "go bag," a black camera-type bag 8 by 7 by 8 inches.  

Thoratec, maker of the controller and all HeartMate II equipment, has just received federal approval to begin issuing a "pocket controller," which is one third the size of mine and weighs only a few ounces. Newly implanted LVADs will have the "pocket controller."  Besides the reduced size and consequent weight reduction there are other positives about the "pocket controller." 

For example, all three leads on the pocket controller attach on one side, making it more carry friendly.  It can be slipped into a pants pocket with ease.

The "pocket controller" also has a display screen, which gives instructions on what to do in response to an audible alarm.

But the best part is that the p-c has a battery that will power the LVAD for up to 30 minutes, in case power from batteries or the plug in power module is lost.

By contrast, the current controller is football shaped, about nine inches long, four inches wide and about two inches thick. It is not easy to slip it into a pocket but it does have a belt clip on the back.  I find that clip useless. The leads on the current controller make it cumbersome to carry.  One cable connects to each end of the  current controller.  The batteries and connections power the controller and in turn the LVAD.

The p-c is a step in the direction of a fully implantable pump with power source inside the body.  But that's another story.

The point of this post is to alert other LVADs and readers to the availability of something that would make an LVAD's life a little more comfortable.

These devices are expensive and each current LVAD needs two p-c's to be prepared.  No word yet from the University of Minnesota LVAD team about when or whether current LVAD owners can expect to swap current controllers for pocket controllers.

Hope is a good thing.  But the reality is that my LVAD, serial number 8358, and its accessories are working as designed.  At least I'm here to talk about it and that makes all the difference.



  

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: 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: The call came from the University of Minnesota...All ahead. Flank Speed.

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

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

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

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

The adventure continues.

Adios for now.

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.

     

Life at 9200 rpm's: 29 months and counting

     I am fortunate to report that I am 29 months into my life at 9200 rpm's, the set maximum speed of my LVAD.   The pump's speed causes more than five liters of blood to circulate through me every minute.  The pump powers life itself.

      The illustration below, the one in blue tones, depicts the typical setup of an implanted left ventricular assist device.  Some of the equipment may not be obvious to those who have never seen it.  In the upper left quadrant is a representative heart with grey and white tubing attached to a small device below the reddish heart.  

     The small device is a HeartMate II.  The line stemming from the lower part of the pump is a percutaneous electrical lead that traverses the abdominal cavity and exits on the left side of the abdominal wall.  The percutaneous lead attaches to the HeartMate II system controller.  

     The controller is depicted as the oval-shaped device at about belt level with three electrical leads attached: the percutaneous lead, and a lead from each of two batteries.  The batteries are depicted in holster like devices suspended from the shoulders of the fictional patient.

 The illustration appears on the Thoratec Inc. website.

These illustrations show the system in operation and label significant parts. The various parts are not shown to scale and in the illustration showing the external battery pack, only a single battery is shown.  But the overall notion of how it works is accurate.  The orange arrows show the direction of blood flow. Stanford University's website displays the illustrations.

     In the right hand illustration, the internal mechanism of the LVAD is shown.  The rotor is the only moving part.  There are ruby bearings at each end of the rotor.  The  rotor works is an Archimedes screw.  The rotor fits snugly inside the pump housing.  The rotor has external threads that cause blood to flow as the rotor turns.

     The point of this discussion is to underscore the engineering marvel of this miniaturized system.  Early versions were larger and had more moving parts.  More failures occurred.  One friend who had an earlier LVAD .model could be heard coming down the hallway.  Now the pump is silent. 

      The HeartMate II, I'm told, has never failed.  That is not to say that LVAD owners don't develop complications like strokes and "events" that cause significant medical problems.  The point is that the pump works well.  As of mid-April, 2012, 10,000 HeartMate II LVADs have been implanted worldwide.

      As I wait on the University of Minnesota's heart transplant waiting list, I am confident in my HeartMate II, No. 8358, established April 2, 2010.

                                                 

My LVAD lifeat9200rpms: Oz, the Tin Man, and a new heart

Going to 1-A status on the UNOS transplant list gives me the willies.  As of Friday evening, July 20, 2012, the pre-transplant coordinator at the U of Minnesota confirmed that I'm now in 1-A status for the next 30 days.  I am using the term "the willies" as a substitute for saying I'm terrified.  

The words to the popular song that Oz never gave nothin' to the Tin Man that he didn't already have are very stubborn right now.  The lyrics and tune are running around in my head.  Thanks America.  

I've gotten this far, 27 months and 19 days downrange from my LVAD implant surgery, and I would not be here without old pump Number 8358 HeartMate II.  Do I really want to give up something that has given me back my life?  Or do I want to exercise the option of going through with a heart transplant?

If, successful, the transplant requires a completely new regimen of anti-rejection drugs for life.  I know there will be side effects from the drug therapy and those are not pleasant to contemplate.

So what makes a person like me, your ordinary 68 year old with a perfectly good heart pump, want to go for a transplant?  I've been asking myself that from day one on the transplant list.  The only answer I have is that I want to be around for as long as possible to interact with and to help my family:  partner, daughters, son, their families and our grandchild. 

The U surgeons transplanted two hearts Friday.  Is that a good omen?  It is good for the recipients but as I understand the situation it doesn't mean anything to my 1-A status.  If a matching donor heart is found, I'm told I get a call.

There are hiccups in the process.  The call comes to the 1-A person when UNOS's computers and statisticians declare a match for transplant.  At the same time a heart transplant team is dispatched to obtain the donated heart, assess it in person, and return with it to the U of MN hospital in Minneapolis.  The 1-A beats feet for the hospital.  Since I live in Fargo, 240 miles from Minneapolis, the air ambulance service is pre-arranged as my transport mode. It will be me my LVAD equipment and my wife.

Because the transplant isn't a go until the heart transplant recovery team obtains the donated heart and I am prepped for surgery, the operation could be scrubbed at any time until the heart surgeon begins opening my chest.  When a transplant operation is scrubbed, it gets chalked up to experience as a dry run.

Having been in the military, I accept the notion of "hurry up and wait."   

Have LVAD Will Travel with apologies to Richard Boone

      I've been driving for several decades and have a decent driving record.  To be practical, having an LVAD is no impediment for me to driving a car.  It is not like a person prone to seizures, for example. In some states, seizure patients have restricted driving privileges.  LVADs, for whatever reason, are not in the same category.

     After receiving my HeartMate II in April, 2010, I didn't drive until well after my hospital discharge date.  So far, so good.  I use a pillow between me and the airbag that explodes at 200 m.p.h. from the center of the steering wheel, hoping that it will lessen the impact. My wife and caregiver says I drive too slowly now.  Indeed, my road race days are a memory.

      Thoratec, most likely for liability reasons, does not recommend driving a car or truck in its LVAD Patient Handbook.
However, driving a car, truck, motorcycle, or flying a private aircraft, all involve risks.  I no longer ride my Triumph Bonneville (that's a Brit motorcycle) because of the Coumadin/warfarin blood anti-coagulant regimen I'm on. What may be a bruise to someone with normal clotting capabilities, could be a problem for me.  The Triumph sits in the garage, waiting for its day.  One LVAD acquaintance has gone on several ocean cruises and once rode a camel, a dromedary(that's the one with a single hump).

     Another issue for the motorcycle enthusiast with an LVAD is not being able to hear the audible controller alarms or see the light array that accompanies some of the alarms, including the red broken heart, because I wear the controller on a belt in a controller shaped fanny pack. If an alarm were to sound, I'd never hear it from under my full face helmet and racket of the machine itself. I would not be able to see warning alarm lights without taking my eyes off the road.  Triumphs are not as noisey as Harleys but I wouldn't trade.  It's a loyalty thing from the 1960s, when Nortons, BSAs, and Triumphs were at their zenith. The Triumph I rode had a kick starter and a Lucas headlight system. The headlight had two positions: flicker and off.  You achieved the "flicker" condition by slapping the headlight housing.  Things are better now. Hell, as everyone knows, Steve McQueen drove Brit bikes and that's good enough reason for me Lucas headlight systems notwithstanding. 

     In my household, I do the yeoman's share of the driving on the road and around town. On the road, I try to get out of the vehicle and walk around to keep blood from pooling.  Blood clots and LVADs are unfriendly.  

     I said somewhere in an earlier post of that Dolly and I have a granddaughter, our first grandchild.  She is now a lively 18 month old, living a thousand miles from Fargo.  Air travel was the practical choice for a visit as opposed to two plus days behind the wheel.

     Air travel with an LVAD installed requires some ingenuity in packing one's gear and plenty of flexibility and patience.  A wag once said the key to flexibility is indecision. In these post 9/11 times and since airline deregulation, we fly under strict scrutiny and packed like boxed matches. Indecision is out.  

     The point is that air travel for an LVAD owner is like the round peg in a square hole--it fits with room to spare.  That's in theory.  Much depends on the local TSA and the airline personnel at checkin and the flight crew. Individual experiences will and have varied. One acquaintance travels by air weekly.  He's had a few tense moments explaining to reluctant flight crew members that his carryon bags do not need to fit into the neat box airlines use for carryon size limits.

      I speak from my experience, limited as it is.  There are two significant components of air travel:  airport security and the size of the aircraft.  Just because you have to take all of your LVAD equipment and gear with you, does not mean that it will easily fit on smaller aircraft.

Here is some practical advice gathered based on my travel and those of LVAD recipients I've talked with.  Everyone knows that our airport monitors, the Transportation Security Administration, part of Homeland Security, has  written procedures for passengers with special needs like LVAD patients.

       The local airport is a regional airport and it serves a metropolitan area of roughly 150,000, including Fargo-Moorhead but also towns and cities in all directions for 100 miles.

I found that TSA workers I have dealt with, admittedly not a large sample, are congenial and accommodating.  It is extra work to check by hand all of my equipment.  The test for gunpowder residue and explosives can exhaust the test kits of TSA.

So like the Coast Guard motto, Semper Paratus (always ready), and the Boy Scouts' motto:  Be Prepared.  Pack your gear in smaller bags. Be flexible. Be patient. And, try to smile.  After all, everyone is having one of those days.

Concerned about traveling by air for the first time, I went to the airport a week before traveling to Nashville from Fargo and talked to TSA inspectors about my equipment and needs.  I did a 'show and tell,' displaying my equipment and my travel letters and telling TSA that: 

      --I needed to travel with my power module, extra batteries, and charger in the passenger cabin with me.

     --I needed to be hand inspected as well because the LVAD could not withstand the magnetometer or likely the back scatter radar body imaging scan. (The full body imaging technology is problematic for stopping the pump. The jury isn't even deliberating because I'd rather be safe than have my LVAD interrupted.) 

      --I needed a hand inspection of the onboard bags and my backup controller and equipment. And, 

      --I needed to take with me some site care supplies, including a quart bottle of Hibaclens, and 0.5 ml ampoules of saline solution. (This does not comport with the 3 x 3 in a clear one quart plastic bag).

No problem, I was told.  Show up two hours before your flight. One TSA worker said not to worry about being too specific about my “special needs” but just call the device a "pace maker." 

I had letters from the Ventricular Assist program explaining my condition and my "medically necessary" equipment.  It didn’t seem to matter to TSA.  For some devices like artificial knees and hips, a wallet size card is given by the medical facility to the patient to help explain the individual situation.  The issue with the electric powered LVAD is that it cannot undergo electromagnetic screening.  

Magnetometers and hand held wands create magnetic fields that will interfere with the functioning of the LVAD. The worst case scenario is that the pulses could stop the pump.  The LVAD is a continuous flow pump.  If it stops, the patient will likely go back to his end stage heart failure condition fairly rapidly.  If the pump stops for more than a few minutes, the experts say that it cannot be restarted without the risk of a blood clot forming in the pump.

Knowing all of this, my wife and I loaded my wheeled suitcase with my equipment, loaded a separate smaller bag with bandages and meds, in our car and headed for  Fargo’s Hector Airport. The challenge of TSA is survivable.  I cannot emphasize too much to allow plenty of time and tap into your reservoir of patience.  

In the end, it took talking to three TSA agents before I was clear on the hand inspection regimen that I required. The first time is always trying because few know what an LVAD is.  I wonder how Dick Cheney handled his frequent flights.

All of your carry on luggage pieces, minus the electronic gear, must go through X-ray, I was told. That means the bags themselves. I unloaded everything for hand inspection into three or you trays and sent the bags through the conveyor line and on through the x-ray machine.

Fargo has no body scanner and no longer uses handheld wand.

Remember, the electronic waves and electro magnetic waves created by the screening devices can cause problems for your equipment, which none of us wants or likely could endure.

     Immediately opt for a hand inspection of your gear and yourself  and resolve to be adamant in you request.

Hand inspection is slower but it was not particularly invasive.  It took about 45 minutes to get through the initial TSA security.

That is only the first concern. The question I never thought about before it arose was how is the aircraft configured for storage.

So when you get to the gate there is another issue:  where to stow your stuff. Overhead compartments and under the seat space in front of you may be insufficient.  There was no “crew closet” to stow my rolling duffle.  The aircraft was too small.  But I had no idea before arriving at the gate.  None of the airline personnel had any clue about stowage of "necessary medical" equipment.

Depending on the size of the aircraft, there may not be room for a piece of luggage containing all of your gear.  The aircraft may not have space in the cabin for your gear in one bag.  nFortunately, the airline pilot learned that there was one empty seat on the flight and permitted my big wheeled bag to be strapped into the seat for the trip to Minneapolis.

Meanwhile, my wife scrambled to obtain smaller carry on bags to repack my gear and our son rushed from our home with smaller bags. The lost and found was helpful at the Fargo airport. One of my cardiologists was to board the same flight and he immediately sized up the problem and offered to let me use one of his pieces of luggage.

Once into the Minneapolis airport, we transferred the battery charger and cord to one smaller bag, put the power module, cords and display module in another smaller bag, and had my site care supplies in another bag.
  

The larger wheeled bag was filled with miscellaneous stuff and checked at the gate.  It traveled in the plane’s hold.  The strategy of using smaller bags worked, but it was a tight fit in the overhead and under the seat.

Returning through Nashville, the process went smoother. It still took 45 minutes to clear TSA.  With more manageable sized duffles, the check in and stowage problems were significantly reduced.

By the way, you’ll need to disable the battery backup in the power module to prevent unwanted alarms during your trip.  For this purpose, you can carry a screwdriver in with the power module up to 7 inches in length.  Explain its use before it is found by TSA.

I had letters from the LVAD coordinators at Mayo that explained the no x-ray problem, the no hand wanding problem, and the no magnetometer problem.  I never had to show them to TSA and TSA did not want to see them when I offered.

Bottom line:  relax, try to keep your sense of humor, allow extra time, be flexible in packing, and stay hydrated. It takes some courage for an LVAD travel by air. If none of this makes sense, wire Palidin, San Francisco, for assistance.

My LVAD lifeat9200rpms: How it happened

       Here is my story of congestive heart failure and a return to life with a left ventricular assist device, my HeartMate II, an LVAD, manufactured in Pleasanton, CA by Thoraec.

I consider myself a walking-talking-living medical miracle with a second chance at life. I should be dead but instead I am a bionic man.  Bionic in the sense that I have a small, electric powered machine inside me, which is attached to my heart to aid my blood circulation.  

So I am a bionic man.  I do not say this lightly and I do not believe I have overstated the situation. At age 65 and a few months, my lifespan was almost over.

That would not have set well with my wife, Dolly, or for our first grand child, a beautiful baby girl, Aria, born December 26, 2010.  If not for the heart pump I received, I would never have met Aria. I am one of the 10,000 persons with an implanted left ventricular assist device made by Thoratec Corporation of Pleasanton, California.  There are about 5.7 million persons in the United States who suffer from Congestive Heart Failure.

My end stage heart failure was all but alleviated April 2, 2010, at St. Mary’s Hospital of the Mayo Clinic in Rochester, Minnesota.  Now I walk, exercise, climb stairs, snow shoe and generally do whatever I want--all made possible by a palm sized, battery powered pump.  All of the symptoms are gone, but the condition remains.  Congestive heart failure is progressive and, for me, a permanent condition.

I would not be alive to write this story if not for able surgeons who implanted a left ventricular assist device. The clinical trials for the LVAD won approval in February 2010 from the U.S. Food and Drug Administration for use in people like me who are suffering from end stage congestive heart failure.  

Here is a smiling Dr. Joyce.

It has been two years since my pump was implanted and that is a milestone. I have had no significant medical events since leaving Mayo Clinic in May, 2010.  Aside from some heavy nose bleeds, that haven’t recurred in some time, I have accommodated well to the electric life support system.  My surgeon at Mayo's St. Marys Hospital was Lyle Joyce.

I am bionic.  My LVAD works on a pair of 14 volt lithium ion batteries.  A belt mounted computer controller on my waist operates and monitors the implanted heart pump.  I carry the controller strapped on all day everyday. I sleep with it as well.

End stage heart failure required surgery: either an LVAD implant or a heart transplant. My left ventricle, the pumping part of the heart, became increasingly inefficient over time until it was working at about 10 per cent efficiency by the time the LVAD was implanted. Most healthy hearts are over 60 per cent efficient.

The implant procedure was open heart surgery. This involves surgical installation of the pump into the left heart ventricle, securing the pump to surrounding tissue, and connection of the electrical system, which includes the computerized system controller. 

The LVAD is secured to tissue below my heart in my chest cavity.  The pump runs on a low voltage electrical circuit connected to a power source outside the body. During waking hours, the power source is batteries. For rest and sleep hours, the power source is a dedicated electric wall socket with power provided through a step down transformer called a Power Module. 

     

         The drive line from the LVAD traverses my body inside the abdominal cavity and exits my body through a slit in my abdomen on the right side above my waist. Thus there is a permanent wire leading from the pump through the abdominal cavity and then through the skin to the outside. There it is connected to the system controller and the batteries.  This power cord, or drive line, is called a percutaneous lead. 

      The exit site on the patient is treated as a wound, which must be cleaned and redressed daily.  The site care is conducted using masks, sterile gloves, strong antibacterial agents, and sterile dressings that are taped over the drive line site. 

Some LVAD patients do not live through their installation hospitalization. If they do live until discharged from the hospital, statistics show that commonly drive line site infections and strokes from blood clots are leading causes of death.  All patients and their care givers are instructed on the sterile procedures to use in caring for the drive line site. 

Thoratec recommends that an elastic waist belt several inches wide be worn all the time by LVAD patients.  To the binder the drive line is attached by velcro tabs.  The idea is to stabilize the drive line as it exits the body to keep it from being yanked or disturbed to the point of becoming an open wound subject to infection.

Without the controller there would be no way to regulate the pace of the LVAD, which has an RPM range that tops out at 16,000.  Mine is set for a ceiling of 9,200 rpms.  I was told by knowledgeable LVAD cardiologists that experience has shown that a rate of flow above 9,200 revolutions per minute can cause abdominal bleeding and other complications.  So my pace of life through my HeartMate II is fairly high speed.

My wife, Dolly, and I, and our four children have lived in Fargo North Dakota since December, 1981. We moved as a family from the Chicago area.

I was a jogger, rode a mountain bike around Fargo, and routinely worked out either at a gym or with Heavy Hands five pounders.  After a stress test in 2002, a local cardiologist told me I had a Chevy heart rather than a Cadillac heart. My ejection fraction was calculated at 31 per cent. In hindsight, since normal ejection fractions range into the 50 to 60 or higher percentages, 31 per cent was a red flag.  

No meds were prescribed and no cardiological follow up was suggested. I went along ignorant that congestive heart failure was lurking. I’m told that an echo cardiogram is a test that lets a radiologist estimate the ejection fraction of a person’s heart. The estimate is just that. Before congestive heart failure overwhelmed me, I never had an echo cardiogram, never heard of one, and had no interest in finding out about them.

I got a motorcycle for my 60th in 2004 and rode locally with friends. When I changed my law practice in 2005, I did not exercise regularly anymore.  Although I was not sedentary by any means I stopped jogging, bike riding and regular in the gym exercise.  In addition I continued to smoke non-filtered cigarettes until a month before I received my LVAD. I quit because they didn’t taste good.

The pneumonia bout caused difficulty breathing.  I had no idea my left ventricle was enlarged and becoming increasingly ineffective.  I could not walk far, wheezed a lot, had little energy, and was tired all the time.  I thought it was just getting older that was causing the problems.  I lived with it until I couldn’t anymore.

Finally, Mayo surgeons implanted the LVAD.  I spent 53 days as an inpatient at St. Marys. The Mayo team of doctors could find no evidence of the cause of my CHF:  no virus and no abnormalities in the organ itself.  Further my lungs and arteries appeared unaffected by my years of smoking a pack a day.

There was some confusion on my part about whether the LVAD was to be a “destination” therapy or “a bridge to transplant.”  Destination means the LVAD is permanent.  A bridge to transplant is just that, the LVAD is in place while the individual awaits a heart transplant.  My Mayo records carried me as a “destination” LVAD recipient.  

I was told I had to wait six months to go through necessary testing to be listed for transplant because I was a smoker.  After the six months, Mayo agreed to let me do the pre-listing tests. I was declared physically fit but Mayo declined to list me for potential transplant.  I learned later that my age was the game changer.  Informally and sotto voce 65 years old is the cutoff for the surgery at Mayo, no exceptions.

At about the time of that decision, I learned from my LVAD/heart transplant support group that the physicians and surgeons at the University of Minnesota were another option for care.  I was accepted as an LVAD patient by the U of M in April, 2011, a year after my LVAD was implanted. 

After a thorough review of my medical history and some additional testing over a six month period from April until October, 2011, the U of M cardiologists and heart surgeons listed me on Halloween 2011 as a candidate for a heart transplant with UNOS.  

A few months later, former Vice President Dick Cheney received a heart transplant.  He was 71 at the time and had been kept alive by an LVAD for more than 20 months, awaiting a suitable donor heart.  A few weeks ago Thoratec sent me a letter of celebration of sorts because the 10,000th HeartMate II LVAD had recently been implanted.  Clearly, with that many pumps on line, LVADs are here to stay.

My working motto when considering where I am in life is to try to think first of  the alternative to not having a heart pump.  The clear alternative would be death. A new heart would be the ultimate, but the LVAD is great. I’m not complaining.  The LVAD was a gift of longer life.

    

In fact, it has occurred to me that it was likely a one way trip to Mayo Clinic. I was that sick.  I toyed with writing my obituary to save my family from having to piece one together without me.

Apparently the Fargo based heart team on that Friday in March 2010 tried both the U or Minnesota Hospital at Fairview in Minneapolis and Mayo Clinic’s St. Marys Hospital in Rochester to see whether either could evaluate my condition in preparation for an LVAD implant.   On that Friday, March 26, 2010, Mayo Clinic won the coin toss.

During the first day I was in St. Marys, an LVAD coordinator showed me and my family an actual HeartMate II pump.  As I held it in my hand and looked it over, I couldn’t refrain from commenting aloud that the pump, which is L-shaped, looked like something you would use to  replace the workings of a toilet.  No offense to Thoratec.  

The “piece of plumbing” runs multiple tens of thousands of dollars for the hardware alone.  Installation is extra. Ensuring that the LVAD works correctly and effectively is also extra.  I relied on Medicare and my Navy retirement health insurance to cover the costs and that’s what happened.

During my 47 day inpatient stay at St. Marys (there was an additional week in-patient in Fargo), I watched a number of educational videos on LVAD implants and success stories from patients.  One of the videos featured a young man playing a racquet sport while carrying his spare controller and batteries in a back pack. I was skeptical since I could barely stand, let alone walk. I got a boost when a good friend stopped by during her regular checkup for her LVAD, and filled me in on what to expect.  

I received my HeartMate II at a time when Thoratec had just released reconfigured batteries, 14 volt lithium ion batteries with a working life for a pair of them of up to 12 hours per charge.  

My friend had batteries that lasted about four hours per pair and so was constantly changing them during the day.  Thoratec had also reconfigured the power module and battery charger, making them lighter in weight and thus somewhat more portable.

There are some things that change radically when an LVAD is installed.  I am no longer waterproof.  Thus, no swimming, no immersion bathing, no wading to fly fish, no canoeing because of the possibility of tipping, and showering requires some modifications.  Since I’m battery powered, I have to be aware of available electric power sources.  It takes about four hours to recharge a set of batteries. I have four sets, which I rotate.  

I carry two charged batteries as backups everywhere I go in case I need to change them or in case the control module malfunctions and must be switched.  I also carry a backup system controller and the spare batteries in a shoulder bag. It goes with me wherever I go.  If I forget my backup gear, I go home and get it.  

        In addition, each month, I rotate the spare batteries in my bag with two of the other six in my inventory.  Thoratec insists on redundancy in the ancillary but necessary equipment. It makes sense since all LVAD patients are essentially in the same boat. Carrying the backup equipment, which weighs under 10 pounds, is a small concession considering the alternative: no power, no pump, return to congestive heart failure or worse.  Like a good scout, it’s best to be prepared.

At any rate, I, like all LVAD patients, carry a functioning set of two batteries connected to a computerized controller. The controller gives operating instructions to the implanted LVAD and monitors its performance. During the day,  I carry the controller in a nylon pouch on nylon belt around my waist.  The controller is programmed to sound various alarms for most functions and malfunctions.

One of the alarms is a red heart with a broken line through it. I don’t want to hear that one because it means the pump has stopped.  I’ve experience it a few times with power source failures, being unplugged from a power source.  There are booting up alarms that users trigger each day when testing the controller.  During that phase of operation, the controller and pump continue to function but the computer sounds all the alarms in a series of tones to ensure that everything is functioning as designed.  

The controller also records “events” including alarms and   changing power sources up to 150 of them, which Thoratec uses to monitor software functions.  During my regularly scheduled LVAD checkups with my cardiologist, the LVAD coordinator downloads data from my controller to a storage  disk, which is then transmitted to Thoratec for analysis and review.

In all there are eight messages that the controller can convey. Some are accompanied by audible and visible signals. They range from the Red Heart with a solid visible signal and a steady audio tone.  This signal means the pump is experiencing a low flow hazzard of less than 2.5 liters per minute, or the pump has stopped, of the percutaneous lead has been disconnected, or is the pump is not working properly.  This one is the biggee.  One of the signals is an audible tone unaccompanied by any light that signals the pump controller is not receiving power.   

 It takes some study and review to ensure a functional awareness of the system controller warning lights and sounds and what to do to in case they sound or show.  I review the warning signals often.

At night or for anytime I think I’ll fall asleep, I shift from batteries to a dedicated electrical outlet and use a piece of equipment called a power module. The point is that a sleeping LVAD patient might not hear an alarm. 

The PM is connected to a data monitor that shows flow, speed of the pump in RPMs, amount of electrical current being used by the LVAD and something called the pulsatility index.  What do those numbers mean?

Flow concerns the total amount of blood pumped per minute.  The human body contains approximately 5 liters of blood. Acceptable flow ranges are from 3.5 to 7 liters a minute.

 

The display module shows the electrical power the pump is drawing, typically for me the power is about 6 + watts.  The acceptable range is 4 - 8 watts.  The pump speed maximum is preset by the LVAD cardiological team.  Mine is set at 9,200 RPMs.  The setting acts as a governor keeping the pump from rising above that rate.  In addition the lower end of the preset range is 8,400 RPMs.  

An alarm will sound if the rate drops below that rate and further action by the patient is required, namely to call the on duty LVAD coordinator to assess the situation and, if necessary, a trip to the ER or being life flighted from Fargo to Minneapolis for possible surgery to replace the LVAD.  Fortunately, my contact with LVAD coordinators has been by phone.  They are a dedicated group and are available at any and all hours.

Finally, the pulsatility index is a number based on an algorithm.  I was told the PI is a view of how the pump is pumping in conjunction with natural heart function. The acceptable PI range is 3.5 - 6.5.  The HeartMate II is a continuous flow pump. It is called a non-pulsatile pump because the continuos flow doesn’t surge like  a healthy heart.  

Many LVAD patients do not have a discernable blood pressure using a standard blood pressure cuff.  But a doppler (like the device used to produce a sonogram during pregnancy, using ultrasound equipment) kit will accurately give a blood pressure reading. The doppler kits are less readily available. Fortunately, my blood pressure can be measured using my right arm.  Also my pulse is quite soft and takes practice to establish.

The numbers generated on the monitor are somewhat fluid depending on a number of factors including patient hydration, physical condition, and salt intake. Each morning, I record my display monitor numbers on a chart. I weigh myself and note that as well. The U of M wants to know the numbers, particularly weight gains, usually due to water retention, of more than three pounds in a day. Such a gain puts extra stress on the LVAD and the patient’s heart.

I wear the same belt mounted controller overnight.  Instead of two batteries, which I carry in an undercover police holster shirt, I plug into the PM using a 18 foot long tethering cable.  The tether allows me to move within the 18 foot radius, enough to use bathroom sinks and toilet. Portable urinals are my option when regular facilities are beyond 18 feet.

When I travel, I must carry all my equipment with me in a large rolling duffle. The power module, the battery charger, display module, various cords, and four extra batteries, along with an emergency battery pack that is designed for one time use of up to 12 hours.  The battery pack, which weighs twenty some pounds, must be replaced after a single use, no matter how short.

The LVAD has one moving part, the impeller.  The LVAD is based on the screwlike machine invented by Archimedes, the renowned Greek mathematician, inventer, and engineer of the ancient world.  The Archimedes screw or screw pump involves a simple machine used to lift water from low lying areas for irrigation purposes.  

The pump consists of a helical device inside a pipe like structure. Turning the screw, moves the fluid through the pipe.  Similarly, in the HeartMate II LVAD, the helix is powered by electromagnets moving blood through the pump and into the body.  It has a ruby jeweled bearing and is self-lubricating.   Earlier LVADs were pulsatile pumps with internal valves that could and did fail.  

       Thoratec’s HeartMate II has now been implanted in 10,000 patients (April, 2012).  In a way, we LVAD owners are all in an experimental stage because the limits of the machine are unknown. As of this writing,  one LVAD has been in place for more than six years.  As the company says that's 10,000 reasons to believe. Each of my LVAD compatriots only needs one reason to believe and it is inside their chests.