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.

Becoming a donor can save lives: One family is trying for a record of donor enlistments

A North Dakota couple whose daughter died in 2004 while awaiting a double lung transplant, wants to set a Guinness world record for the most new organ donors to be signed up in eight  hours. The purpose is not just to set a record but to raise awareness about becoming a donor.  Here is the Forum newspaper's account:

FARGO - Monica Kersting is out to set a Guinness world record and she needs at least 4,136 people to help her do it.

The West Fargo woman leads the “Give to Live” challenge drive to sign up more than 4,135 people as organ donors in North Dakota in eight hours.

To do that, Monica, her husband, Loren, and a couple hundred volunteers will have to process every new organ donor’s paperwork in less than 7 seconds – at least eight a minute.

The Kerstings, who also founded Alexa’s Hope, an organization dedicated to ending the need for waiting lists for organ transplants, say the mass sign-up in Fargo on Nov. 23 will help toward that end.

Alexa’s Hope is named after Monica and Loren’s daughter, Alexa Kersting, who died in 2004 at the age of 14 while awaiting a double-lung transplant.

“I just thought it would be a great way to raise awareness, and to kind of really bring that need to the forefront,” Monica Kersting said. “It’s the kind of event that people get excited about. It creates a lot of buzz. That’s what we need to make people more aware.”

The sign-up will be from 9 a.m. to 5 p.m. at three sites:

    The Fargodome, 1800 N. University Drive, for the 19,000 fans attending the     football game between North Dakota State University and the University of South Dakota.

    Fargo Air Museum, 1609 19th Ave. N.

    The Coliseum. 807 17th Ave. N.

An adjudicator from Guinness will be at the Fargo Air Museum, Kersting said.

Guinness rules allow for more than one sign-up site, as long as they are within a half mile of each other, Loren Kersting said.

“We’re trying to make it as convenient as we can, so no one has to stand in line or stand outside,” he said.

The website www.alexashope.org has links to sign up as an event volunteer, downloadable organ donation forms that can be filled out in advance, and the guidelines on what people need to do to become an organ donor through the event.

Potential donors must be 18 to register in the challenge, though there is no upper age limit. People from anywhere in the U.S. or Canada can sign up at the three sites. Beyond turning in a completed organ donation form, participants must show a driver’s license or state identification card.

North Dakotans who already have “donor” on their license or ID can’t sign up at the event, but they can volunteer and are encouraged to invite others to sign up.

Guinness rules do allow people registered as organ donors in other states to sign up at the North Dakota event and still be counted, Loren Kersting said.

The record for signing up the most organ donors was set Jan. 1, 2013, at Dharmsinh Desai University in Gujarat, India.

Funding for the drive comes from a grant by the Dakota Medical Foundation, the Kerstings said.

Loren Kersting said there are 120,000 people on transplant waiting lists in the U.S. An average of 18 people die every day while waiting for transplants, he said. 

Organ and tissue donors are selfless givers of life.  If you are not a donor, sign up to become one. It doesn't hurt, takes a few minutes, and may save someone's life.  I wouldn't be here to write this post if not for the donation of a heart last June 8.

Five plus months down range from a heart transplant: Adapt and Overcome

The combination of drugs I take to stave off rejection of my new heart, particularly Prednisone, a well used steroid, are playing havoc with my blood sugar levels.  

I'm told that normal blood sugar levels are about 100 mg/dl.  Newly transplanted patients often experience higher blood sugar levels until weaned entirely from Prednisone.  My levels have ranged into the low 300s. Continual high blood sugar can interfere with the healing process.

Within the first weeks after transplant, I was administered both long acting and short acting insulin to tame the high blood sugar levels.

Then after several weeks the insulin regime ceased.  Don't worry about it, I was told.  The blood sugar levels will return to normal in  time.

Last month, the cardio team at the University of Minnesota Hospital decided that an insulin regimen.  I take the long acting variety once a day and the faster acting variety before meals.  

I carry my blood sugar monitoring kit with me in my "go bag," which also has juice, hard candy( juice and candy are needed when my blood sugar falls below 70), procedure masks, hand sanitizer etc. as part of my standard kit.  Not a heavy as the LVAD bag, but I don't leave home without it.

Four months after transplant and things are going well

Life changed for me last June 8th.  I received a new heart from a selfless donor, and for that I am humbled and forever grateful.

After 38 months plus with a left ventricular assist device keeping me bionically alive, I'm able to live without mechanical support.  The things we take for granted amaze me.

Driving home to Fargo from Minneapolis, I became aware of how many shades of green there are.  I had a different outlook.  No longer were the fields and woodsy areas just fields and woods.  

Perspective and attitude are changeable, if you want them to be.  You're only limited by your imagination.  If you can dream it, you can achieve it.

There have been (and likely will continue to be) rough patches particularly in negotiating the balancing of the medications that keep my body from attacking and rejecting my new heart.  I accept the challenge and am moving on.  Acceptance is the key.  Sometimes you get stuck on something.  There are bad days but fortunately there are many more good days.

I began cardiac rehabilitation last week and feel much better for the exercise.  It has taken these several months since receiving my new heart to feel well enough to launch into an exercise program.  It is relatively slow going and controlled.

I learned the other day that the pneumonia I had may have come from a fungus carried in the cells of the donor heart.  Fortunately, I'm being treated for the fungal condition and the cardio team says it will be resolved favorably.

Don't forget to check out becoming an organ and tissue donor.  Go to www.organdonor.gov

Five months after transplant: situation report

Returned home from my regularly scheduled Minneapolis clinic appointment and lab tests. All went well. I was relieved of having to wear a hospital procedure mask as it's been almost five months since transplant. 

An organ recipient's immune system is suppressed significantly to allow the new organ to survive in a body that only knows it is dealing with a foreign invader.  If only the immune system could communicate and use reason, right?

Meanwhile, a friend with an LVAD has developed a driveline infection, for which he is being treated with a course of anti-biotics.  His transplant team has listed him as 1-A and will be preparing him to receive a heart transplant using chemo therapy to reduce anti-bodies in his system. He's been on the list for a couple of years. 

Once his driveline infection is stabilized (not cured) he will likely continue on anti-biotics and undergo the chemo therapy as a hospital patient until a suitable donor heart is found. 

All LVADs acquire anti-bodies because of the pump.  This can make a donor-donee match harder because tissue samples need to be taken from the donor heart to make the match work. It lengthens the process and could result in not being able to find a suitable donor heart, depending on a series of other factors like blood type.

But once a driveline infection erupts, things go mostly downhill.  The rate of decline for a HeartMate II owner varies but the infection can only be stopped by either a new LVAD or a transplant operation. 

My LVAD showed signs of clotting and I acquired a driveline infection last fall. The clotting symptoms occurred at about the 30 month mark after implant.  The clotting occurred at about the 36th month mark after implant.

I was told that I might need a new pump.  But the transplant team at the U of Minnesota took a more conservative approach because of the danger of anti-body build up with the blood transfusions that usually accompany the implant of a second LVAD. I got no replacement pump and no transfusions, but that led to receiving a new heart.

The doctors got me stable in late May and I returned home.  A few days passed and on June 8, I got the call that a suitable donor heart had been found.

Meanwhile, I'm living each day as fully as I can.  Energy level is increasing day by day.  Strength is returning as well.  I hear the strains of the theme from the John Travolta movie bouncing around in my head "Stayin' Alive."

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

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

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

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

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

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

If you are going through hell, keep going. --Winston Churchill

The cardio team at UMMC concluded that I have no infection causing gastric issues so the culprit is likely the anti-rejection meds. But I only lasted one day out of the hospital before returning for "close observation," electrolyte level check, and general blood panels to check organ functions.  But the anti-rejection meds need constant monitoring and adjusting.  The other issue under scrutiny is a nagging and persistent cough.

One of my fellow heart transplant friends told me it took eight months for him to feel relatively normal.  He was plagued by all of my complaints and then some.

Those medications are at the core of keeping my new heart but they often wreak havoc on the gut.  I suspect it is like riding a camel with attendant ups and downs and all arounds.

At any rate, I lasted a day out of the hospital and then returned for observation because the gastric issues seem to be getting more severe.  It only feels like going through hell.  The docs say it will take time to resolve and to hang in there.

Small price to pay for a new heart, right?  I am adamant that I will keep going. I'm not at the end of my rope but I've secured it to my wrist, and am holding on, so I won't fall if I do reach the end of my rope.

The cardio team and consultants have been trying to learn what my lung ailment might be.  Some form of pneumonia is likely and it could have been caused by inhaling fungus spores.  With a suppressed immune system, many things are possible.

On the organ donor front, did you know that up to 60 persons can be helped by an organ donation from one donor?

Age is no issue for a prospective donor, but a donor must be registered.  The oldest donor on record was 92.  Even, I can be a donor, new heart and all.

Have the conversation with your family now.  Don't wait. Your selfless gift will change lives. 

The First Year After Transplant: Working Out the Bugs

The Cardio team at the University of Minnesota doesn't take nights or weekends off.  That is good for us heart transplant patients.  The team has handled all manner of complex problems, which are, of course, individually based.  One size does not fit all.

With just three months since transplant, I have had some rejection of the new heart, and spent last week in the hospital addressing it.  Once that hurdle was overcome,  it was back to Fargo for a few days, and on to the next hurdle.

This week it was dehydration based on unremitting diarrhea.  The question is whether the condition is based on an infection or is in response to anti-rejection medications.  Those meds suppress my immune system and my white blood count, which can allow infections to develop. Without a suppressed immune system, my new heart would be toast.

The infection angle is being explored.  The drug response will be addressed after the infection angle is resolved.

The Cardio team has managed these and other conditions successfully.  Management of the new heart transplant patient is as much a critical phase in the process as the transplantation of  the new organ. 

For me and my family this is all uncharted territory.  Guidance from the physicians helps with perspective. They don't have all the answers but finding answers is what they are all about. 

Meanwhile, anxiety can and does run high because there are no definite answers now.

I know I am not the only one who has faced these issues.  While the issues are a concern, they are being addressed and I have confidence they will be overcome.  It just takes time and patience. 

Easier said than done, particularly for those in the throes of what seems like chaos.  But I'm grateful for what I have.  Few get a second chance at life. Organ donors make all the difference.

Remember, you can become an organ donor with just a mouse click.  Go to www.donatelife.org.

There is nothing more exhilarating than to be shot at without result.-- Winston Churchill

Twelve weeks downrange from the transplant operation, June 8, 2013.  Despite some setbacks, things are progressing well. The HeartMate II, left ventricular assist device, was my 24/7 life support for 38 months and served me well, but having a heart transplant was and is the ultimate solution for end stage congestive heart failure.  I am one fortunate fellow.

Rejection speed bump encountered and passed.  No one knows what the future will bring: the key is to live in the moment.  Easier said than done, when you don't feel well and are in uncharted territory.  I keep telling myself that the only easy day was yesterday.  It has become a kind of mantra, quietly repeated, but it helps.

Hence the Churchill quote in the working title of this post.

I've had a week off from hospital duty but go back again Tuesday for another right heart biopsy to check the rejection factor.  Even though all heart transplant patients take a number of anti-rejection drugs, the body's immune system can still rear it's head and cause havoc with the new organ.

Meanwhile, I've applied to LifeSource, the organ transplant procurement agent put in place by the federal government, to be a volunteer speaker to high school students and others encouraging them to be organ donors.

Many balk at the notion of sharing their organs and tissues. But without donors there would be no transplant programs. It is not that you are sharing an organ or tissue with a stranger but that part of you continues on and selflessly supports a life in one who truly needed it.  What a gift.  

Being a donor is courageous, in my view.

Be a donor. Visit: http://www.thenationalnetworkoforgandonors.org

You've gotta have heart, all you really need is heart

I learned that my new heart was showing the first signs of rejection this week but all is not lost. Not by a longshot.  These things happen and more frequently than not are a new heart speed bump.

I traveled Monday last to the U of MN for what I thought was a routine biopsy of the new heart.  There have been about 10 of those biopsies through the right Jugular vein so far and each was negative for rejection.  

That changed Monday afternoon when my transplant coordinator called as I traveled back to Fargo (actually more than halfway home). After a minute's hesitation, I returned to Minneapolis.

It developed that my new heart was being attacked by my body's immune system but it apparently wasn't something to be too concerned about, because the cardio team caught it early.  The counter attack by the docs involves a three day course of heavier doses of anti-rejection drugs and close monitoring of vital signs.  So I'm back in the U of MN hospital for observation and care.

Looks like a week long stay.

The strains of "Heart" from the musical Damn Yankees have been running around in my head: 

You've gotta have heart 
All you really need is heart
When the odds are sayin' you'll never win
That's when the grin should start
You've gotta have hope
Mustn't sit around and mope,
Nothin's half as bad as it may appear
Wait'll next year and hope
When your luck is battin' zero
Get your chin up off the floor
Mister you can be a hero
You can open any for, there's nothin' to it but to do it
You've gotta have heart
Miles 'n miles n' miles of heart
Oh, it's fine to be a genius of course 
But keep that old horse
Before the cart
First you've gotta have heart

I particularly like the line "when the odds are sayin' you'll never win/ that's when the grin should start..."

Grinning is good.

What does "and beyond" mean in the working title of this blog?

After 38 months of carrying a heart pump, a left ventricular assist device, around in my chest, keeping me alive, I was fortunate to receive a donor heart in early June. I was listed as a heart transplant candidate in October, 2011, so my actual wait for a heart was about 20 months.

The LVAD was implanted in April, 2010, at Mayo Clinic, after the sudden onset of end stage congestive heart failure.  Without the LVAD, my days were numbered.

When I received the call that I donor heart had been found, what was left of my heart leaped out of my body.  Talk about excitement.  But knowing that it might be another dry run (I had three by June 8, 2013) I tried to contain myself: anxious, frightened, and a lot of other things that have descriptions in the same vein.  As I've commented in the last post, the air ambulance ride from Detroit Lakes, MN, to Minneapolis was a blur.

But that is only the beginning of the odyssey.  It has been reported to me that the surgeon suspected "acute rejection" of the donor heart by my immune system. There were two potential outcomes:  either the heart "woke up" and functioned or it didn't. Sounds detached an clinical.  I didn't know what was happening because I was asleep.

My surgical team at the University of Minnesota Medical Center, sedated me and kept me breathing with life support machines.  I was in medical limbo for many hours.  As I said, it could have gone either way.  Such are the fortunes of war.  Once the first shot is fired, the best plans are usually worthless.  No outcome is predictable until the last shot is fired.

In my case,  my new heart awakened and began to function.  My breathing was not quite so quick to return to normal. It took 8 and 1/2 days for me to be able to breath unassisted.  Meanwhile, any muscle tone I had was gone.  I couldn't open my hands and couldn't swallow very well.  I couldn't stand let alone walk.  Balance was shot.  I dropped 25 pounds.

Meanwhile, the anti-rejection drugs were taking a toll.  Some of these immune suppressing drugs will be a lifelong proposition.  I took 10 or more daily medications with my LVAD.  I now take about three times that number.  Some I will gradually be weaned from.  Others remain for the duration.

So the focus of these postings will shift to what is happening after a heart transplant and that's where the"Life at 9200 rpms and beyond."  The LVAD is gone and the fixed speed of 9200 rpms is history.  I am no longer bionic.  Now I'm self-contained and waterproof again.  

If I count my original heart, the LVAD, and now this fantastic gift of a donated heart, I'm gaining on the proverbial cat's nine lives.  This is chance number three and so a Third Chance at Life.

All who are interested, welcome to an evolving life blog with emphasis on beyond the HeartMate II.

Breaking Radio Silence: I have a new heart

Another chapter closed and the journey continues.  LVAD to new heart. It has been a journey, and the journey continues.

I donated all of my batteries, controllers, battery clips and all of the other LVAD equipment to the University of Minnesota LVAD program.  I do not need them anymore and hope my LVAD coordinator will find a good use for them. 

I have a new heart as of June 8, 2013.

My LVAD, a HeartMate II, stood me in good stead for 38 months and six days. The call for a heart transplant came from a U of M transplant coordinator on Saturday, June 8, before noon with instructions to be at the local airport in 30 minutes for an air ambulance ride to Minneapolis.  All I said was "Aye, Aye" and packed my LVAD gear as a backup plan. This could be another dry run and I'd need my gear to survive. It happened once before. 

The transplant didn't go too smoothly.  The new heart was in shock and acute rejection was suspected. The surgeon closed me up (of course I had to be told about all this since I have no recollection) and sedated me.  I couldn't breathe on my own so I remained sedated for 8 1/2 days. I'm told the new heart perked up about day 3 of the induced coma and has been doing fine since then.  

When the Rip Van Winkle-like sleep/fog began to lift, I immediately looked for my controller, the brains of the HeartMate II LVAD system, and couldn't find it.  I carried it 24/7 on my waist for 38 months plus.  How, I asked myself, am I living without my controller? It quickly became apparent that I had no need for a controller.  Freedom from being bionic. Waterproof again.  Fly fishing on the horizon. Not being waterproof with my trusty LVAD 
kept me in landlubber status for several years, since April 2, 2010 when it was implanted.

But after that long a period of intubation I had nothing left. I couldn't stand or walk, muscle tone was gone.  I had to learn to swallow again. Because of the large dosages of anti-rejection drugs, I couldn't sleep for three days, and still sleep fitfully. Once the meds are regulated, I'm told sleeping will  not be so difficult.

Now I can use light (2#) dumbbells to increase upper body endurance and the treadmill for 20 minutes.  Big improvement. Balance is returning.  But lack of a vegas nerve, which helps control heart rate, takes some adjustment.  I cannot just get up and get going but have to go slowly. Fainting is the problem because the new heart takes time to catch up with activity level.

So here I am in Minneapolis with an entirely different set of medications, anti-rejection meds, and a steroid among many others.

I was absolutely dependent on my HeartMate II, so it is not surprising that I looked for my waist carried controller several times in the first days I was conscious and could not believe I was alive without it.  The mind can play tricks. But I'm here and this post is not battery powered, for which I am forever grateful to my donor, my family, and my supporters. As an LVAD says, "the good saga continues." 

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: Third call for a donor heart but alas no hat trick

Waiting on an organ transplant list has its ups and downs. Nothing new about that. My comrades and I joked in the military about hurrying up to wait. It was true more often than not.  But if you missed a troop movement or your ship sailed without you, the potential for a court martial stared back at you.

So far I have remained in readiness as a candidate on the heart transplant waiting list at the University of Minnesota since Hallowe'en 2011or about 18 months.  Since the number of donor hearts has been shrinking slightly each year, the waiting time is necessarily longer.

But still, I keep my cell phone charged and at the ready in case "the call" comes.  So far, I've had three calls, but none resulted in a transplant.  I'm calling it a reverse hat trick.  A hat trick is three scores in a sporting event like ice hockey by one player in one game.  For those who remember Gordie Howe, "Mr. Hockey," of the Detroit Red Wings, his version of a hat trick was to score, get an assist, and get into a fight in the same game. But I digress.

The first time I got "the call," I was told to stand down within 20 minutes.  Twenty minutes is enough time to upset anyone's applecart.  That time I did not get airborne.  The plan is to be flown by air ambulance from Fargo to Minneapolis.

The next time I got "the call" I was in Detroit Lakes, MN, about 50 miles east of Fargo. It was also a dry run. The weather was snowy, foggy, and winter like. DL was pre-approved as a launch point because it is closer to Minneapolis. My wife and I met the air ambulance at the Detroit Lakes Municipal Airport, watched the landing lights illuminate based on a radio transmission from the aircraft, and were whisked to the University of Minnesota Medical Center at Fairview.

I was fully prepped for surgery, which means ingestion of an array of medications including anti-rejection, immune system suppressants and others.  About 20 different, doctors and medical personnel talked with me about the "procedure" during the three hours I spent in "pre-op."

When my appointed time to meet with the transplant surgical team arrived, an LVAD coordinator told me the transplant investigative team called off the operation.  Better to find as suitable a donor heart as possible before hand than to risk problems after transplant,  I was told.  I agree.

Trying to fix something after installation can result in a whole set of problems that no one could have anticipated.  So there I was, along with my faithful wing woman, at the brink of the transplant operation when we were told to stand down, get dressed, and leave the facility.  

We repaired to a nearby hotel for the night and returned to Fargo by car the next day.

The third time I got "the call" was last week.  It came about supper time and the call was from my cardiologist.  After talking about the donor heart, which was described as "strong," I agreed to accept it.

Within about 30 minutes, the cardiologist called back and told me to stand down.  The investigative cardiology transplant team examined the donor heart in person and found that it would not be suitable for me after all.

So I've been through a "reverse hat trick." No heart but my faith and hope are strong.  Every day I am thankful that my LVAD, a HeartMate II, allows me to wait for a suitable donor heart.  

My Life at 9200 rpm's: It takes a licking and keeps on ticking.

John Cameron Swayze, the late TV newsman and Timex watch pitchman, made the phrase a well recognized advertising slogan for the wrist watch company in the l950's and into the 1970's.  Once, Swayze met an ocean liner as it landed, removed a Timex from the ship's keel, and uttered "It takes a licking and keeps on ticking."  Well done.

As for me, I'm still ticking with my HeartMate II LVAD, three years and three weeks after implant.  There have been a few challenges but the cardiologists at the University of Minnesota Medical Center, Fairview, overcame them and I and my family and friends are forever grateful.

A kidney infection and signs of a blood clot forming in the pump, caused me to be flown by air ambulance from Fargo to Minneapolis March 20.  I was in and out of the hospital (mostly in) over the next month, returning to Fargo as the Red River of the North tried to make up its mind whether to flood the city.

Because the LVAD is a continuous flow device, it pumps blood at a fixed pace until the pump cannot pump.  My fixed flow is 9200 rpm's, which moves more than five liters through my system every minute.  One effect of this constant flow through titanium is to break up some red blood cells.  

The shearing of parts of red cells can begin the clotting process because the body cannot tell that it should not stop the blood flow.  The doctors use medical terms for all of this but I've reduced it to English.

Since there is no way to see inside the pump, blood tests for things like hemoglobin and plasma hemoglobin have been used as indicators of what is happening within the pump.  Hemoglobin is the blood's oxygen carrying capability.  Measuring plasma hemoglobin gives a view of how many red blood cells are being cutup by the pump.

The point is that if the causes of the cell shearing cannot be slowed, stopped, and reversed, replacing the LVAD becomes a real possibility. The body cannot help itself in deciding to try to clot the perceived wound.  

Fortunately, after IV drug treatment and adjustment of medications that can negatively affect kidneys along with adjustments to other medications, my hemoglobin and plasma hemoglobin values began to stabilize.

No LVAD replacement for me for now.  I continue on the heart transplant list, awaiting a suitable donor heart.  As I've said repeatedly, without my LVAD, I would be toast.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My Life at 9200 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: Helpful LVAD communities on the web

The longer I have my LVAD, the more worthwhile I find that sharing experience of life with a mechanical circulatory support device/LVAD can help others.  

Those thinking about getting an LVAD, for those who, for lack of time to consider the option because death is around the corner, and wakeup to find they have an LVAD, and for those somewhere in-between, here are some resources that you may find helpful.  

I got my LVAD almost three years ago and had little choice in the matter.  If I wanted to remain alive, a HeartMate II, was the only option.

Facebook has several groups I belong to:

LVAD Warriors,

LVAD Inc. and Beyond, and

LVAD Friends.

The posts are current, relevant, encouraging, and helpful. Some of the posts will make you glad. Others share brutal, sad reality.  The point is, these are places to share: triumphs, setbacks, daily living-- "the full catastrophe" as Anthony Quinn, acting in the 1964 movie  Zorba the Greek said.  

Zorba seemed to mean experiencing all of life not thinking a catastrophe was certain disaster. Having an LVAD is not the end, the unraveling, but another phase of living.  Celebrate. 

Any person with an LVAD, no matter what the brand, and all those with an interest can join.  You need approval from the moderator. Search for them on Facebook and contact the moderator.

Google search for left ventricular assist devices and take your pick.

I visit MyLVAD.com often.  The forum section has plenty of practical information based on experience that only comes from having the LVAD experience. Take what you like and leave the rest. 

Another spot I visit is WebMD.com.  Thoratec and HeartWare each have websites that have useful information but no sharing in the Facebook sense.

The point is to have a place to share.  By sharing, I find comfort and hope.  I am not alone.

My Life at 9200 rpm's: An LVAD Warrior on the front lines

When I waved in the rear view mirror at St. Marys Hospital of Mayo Clinic in May, 2010, I knew that my life link to medical information for survival would come from my LVAD Coordinator.    

At the time, Mayo did not assign a particular coordinator to a particular patient. It was a potluck situation:  you got the coordinator on duty.  When I transferred my care to the University of Minnesota Hospital, I was assigned a specific coordinator.  I like the U of M system because it builds a relationship, a bond, based on trust.  

I don't dislike the Mayo method which treats coordinators and patients as interchangeable.  But at the U of M, I don't feel like a number.

Coordinators are universally well trained, experienced registered nurses. Their level of dedication is beyond passionate. They work closely with LVAD teams of surgeons, cardiologists, other health care professionals and are the conduit through which LVAD patients receive vital information and referrals to specialists.  They are like a football quarterback, who takes the whole picture into account before calling a play and carrying it out.

My friend and fellow LVAD recipient, Kristi Mardis, has obtained the ideal job: an assistant LVAD coordinator for her LVAD implantation center and hospital, Baptist Health in Little Rock, Arkansas.  The hospital is fortunate to have her.

She has the hands on knowledge and experience with her HeartMate II, LVAD, that is unavailable from any other source.

A recent article about her decade long heart failure journey is available at http://www.imperialvalleynews.com/index.php/news/health/3048-lifesaving-technology-provides-promise-for-heart-failure-patients.html

My LVAD Life at 9200 rpm's: A heart, a heart, my kingdom for a heart

Shakespeare quoted King Richard III, the last Plantagenet English monarch, as shouting during a fatal battle some 500 years ago:  "A horse, a horse, my kingdom for a horse."

My paraphrase of the quote just popped into mind.

Richard, a reputed blackguard, was in his final battle against Richmond/Henry VII and Richard III found himself without a horse to continue the fight. Hence, his shout for a horse.  The demand went unanswered and Richmond/Henry VII killed the king in a battle on Bosworth Field in 1485. 

Richard was the last king of England to be killed in battle. That battle ended the War of the Roses.

In thinking about this narrative, unlike Richard III, I am clearly not in a demanding mode at all.  Also clearly I have no kingdom to offer in exchange for a horse/heart.  The point of the use of Shakespeare's Richard III quote was to call attention to the recent story of the archaeological discovery of the skeleton of Richard III.  

His bones were found under a parking lot in Leicester England, northwest of London.  Originally Richard III was buried in the floor of the cathedral at Greyfriars in Leicester.  The successor king was a Tudor.  The Tudors wrote the history of Richard III and other Plantagenets, casting him and others as evil and underhanded.  It was the Tudors who hanged his corpse on public display and permitted hacking at the body.

The successor Henry VII, and his followers were in charge of Richard III's burial.  The body was found in an unmarked grave. There was no evidence found of a coffin or shroud, and the naked body was put in the ground in a grave that was too short for the king, who as about 5'8" tall.  It took modern science to sort out his identity.

The story of the archaeological find gets complicated because the Leicester Greyfriars cathedral, home of a Franciscan order of Catholic monks, was destroyed during the Dissolution of Monasteries in the middle 1500's, when England's state religion became Anglican and Catholicism was banned.  Eventually, the site of the razed cathedral became a parking lot. Who knew?

The skeleton of a male was uncovered at the Greyfriars cathedral site last September and its DNA was tested.  Earlier this month, the lead archaeologist from the University of Leicester announced that the results of the DNA testing confirms that the skeleton remains are likely Richard III, beyond a reasonable doubt. 

Conclusive tests are pending, but the king's scoliosis (curvature of his spine) and various "humiliation" wounds (sword slashes to the face, an axe wound in the head, and a stab wound in the buttocks, for example) on the skeleton match accounts of Richard III's demise. The remains are scheduled to be reburied in Leicester cathedral. The Times of London suggested that the remains be buried in Westminster Abbey, the rightful final resting place for British monarchs.

Meanwhile, my LVAD is performing as designed.  The machine allows me to wait for a new heart.  With the HeartMate II LVAD, I have no signs of my end stage congestive heart failure: shortness of breath, easy fatigue, wheezing and assorted other deficiencies.

I continue as a listed candidate for a heart transplant at the University of Minnesota Hospital. 

Because of an infection at the driveline site, which is treated as a wound and dressed daily under sterile conditions, that I continue to   fight, I have not been able to exercise since last December 5.  Any additional abdominal movement, such as that during the use of a treadmill, elliptical machine, or recumbent bike, caused the fragile wound site to bleed and weep.

But in the last week, the site has sealed to the point that I've begun to use a treadmill at home. I'm not breaking any speed or endurance records and find it very tiring.  It is amazing the diminished conditioning level you experience, when you aren't exercising regularly. 

Another issue has been the level of anticoagulant medicine I need to keep a constant INR. The medicine most LVADs take to keep their blood from clotting easily and clogging the pump is affected by exercise, diet, and the antibiotics I'm taking.  If the INR is too low, clotting can occur. If it is too high, a bump to the head could produce fatal results. 

The journey continues.  I am among the most fortunate, and a beneficiary of modern science and technology. The alternative could have been burial, whether under a parking lot or not, is immaterial.

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

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

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

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

Here is the link to his story:

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

My life at 9200 rpm's: 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: 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.

My Life at 9200 rpm's: 33 months and counting, another milestone on an LVAD

My life at 9200 rpm's began April 2, 2010.  9200 rpm's is my LVAD pump speed, which typically varies downward by 20 or so rpm's before returning to the signature speed.  

Every LVAD is different and can be programed to run at a different speed. How Mayo surgeons decided on 9200 was never fully explained. That speed works for me.

At any rate, I've had a monthly heartaversary--number 33--as of today.

No complaints.  The HeartMate II is functioning as designed and quite well actually.  

I have been battling a driveline infection since early December.  The site where the driveline enters/exits my abdomen has been an open wound for most of the last month. 

Driveline site infections are potentially life threatening for LVADs.  In essence, the path along the driveline is a direct route to the heart and the pump itself.  Surgeons can fix some of the problems.  Replacing the LVAD at $75,000 per pump, a long surgery and recovery, is another option.  

The figure is for the hardware and does not include installation and aftercare.  Another, permanent, option is a heart transplant, but no one can count on that happening because the matching process for donor-donee accounts for fewer than 2,400 transplants a year.  

There are many thousands more in need of heart transplants.  I am one of the fortunate few who have an LVAD keeping me alive.  In that sense, LVADs have a breather--some time to wait for a heart--while those without LVADs are in greater immediate need for a scarce supply of suitable hearts.

A friend and fellow LVAD shows the HeartMate II on his blog, From The Bottom of My LVAD.  He described it as looking like door hardware, I prefer calling it toilet tank hardware.  Pretty expensive hardware, whatever the name.

The site has been tender and at times uncomfortable and somewhat scratchy. I changed the method for carrying my two batteries from a 5.1.1 Tactical holster shirt made of stretchy material that caused discomfort to a pair of Thoratec Go-Gear shoulder holsters.  Those cut down the irritation.  Oral antibiotics (two kinds) are doing what they should do.  

Next week I'll return to the University of Minnesota Clinic for a checkup.  That will include an assessment of the driveline site by a surgeon, and an infectious disease specialist's review of my situation and the medications I've taken.  I feel matters are in good hands or else I'd be hospitalized for the administration of IV antibiotics. 

Marking the 33rd month heartaversary is a significant milestone for me.  Some LVADs have and are having more months fly by but there are many more whose heart conditions could not be helped with an LVAD.   

I'll take a heartaversary over the alternative anytime.