Just passing through: seven months since transplant

January 8 came and went as night follows day. It was a routine Wednesday for most. For me it was another benchmark for a relatively newly transplanted heart patient. 

I'm now seven months down range from my heart transplant and feeling better daily. For example, climbing stairs was slow and strenuous for many weeks.  Resting on a landing was routine.

Cardiac rehab is having a progressively good effect, it seems. Stairs are not as big a problem as they were just weeks ago. 

There are no guarantees in life as everyone knows. There are fewer donor hearts available each year and this is the year when more LVAD operations will be performed than heart transplants, roughly 2,300 LVADs versus about 2,200 donor hearts.

A friend of mine with an LVAD has been listed for a heart transplant at Abbott Northwestern Hospital in Minneapolis.  He's been on the 1-A list for over 100 days.  1-A status is the highest priority for a candidate for a new heart. 

His job requires him to travel but his doctor nixed travel plans for next week, saying he needed to be close by because a heart is around the corner.

The friend's dad made the pair unique because he was just implanted with a HeartMate II.  The pump gives the recipient a second chance to live.  So until the son is transplanted, the pair are the only father and son LVAD owners. Here's a link to his blog http://waitingforanewheart.blogspot.com

The significance is clear to me:  LVADs can help young and old alike.  As few as 10 years ago, none of us--the father and son or me--would be here for long, once congestive heart failure reared its head.  The LVAD has made all the difference, allowing me and my friend to await a suitable donor and having a good quality of life during the wait.

A New Year's Resolution: determination is good

About four years ago, I was basically a goner.  Of course, the sick person is the last to know.  Congestive heart failure can sneak up on you. I had no family medical history except anecdotally.

The signs, though, are clear. Breathing, walking, talking, sitting, standing, sleeping all become difficult or impossible. 

I am most fortunate because I was healthy enough, despite smoking off and on for several decades, to be eligible for a left ventricular assist device or LVAD. There are at least two such devices approved for use in the U.S. Thoratec's HeartMate II LVAD and HeartWare's MVAD.  Both are life savers.

I was implanted with a HeartMate II on April 2, 2010 at St. Marys Hospital of Mayo Clinic.  I learned later that my heart had become so inefficient that I would not have lasted but a few days or weeks at most.

Eligibility for an LVAD follows a strict protocol.  A candidate must have bodily systems--kidneys, liver, lungs etc.--that are healthy.  It took the Mayo team a week of testing to ensure that I was fit enough to accept an LVAD.  My age was also a factor.  I was 65 at the time.

Once I received the LVAD and was discharged from Mayo, I kept the LVAD or rather it kept me for the next 38 months and six days.
Mayo declined to list me as a heart transplant candidate because of my age and that I had an LVAD.  Go figure.

Most of the LVAD/Heart Transplant support group in Fargo were implanted or transplanted at the University of Minnesota Medical Center. After about a year of driving to Rochester from Fargo and back (about 5 hours each way), I decided to see whether the U of MN would accept my aftercare with an LVAD in April, 2011.  I was approved and was listed as a heart transplant candidate in October, 2011.

My LVAD performed as designed until about November, 2012, when problems arose. I got a driveline infection.  It was thought to be an external infection but when the pump and driveline were eventually removed, I learned that the infection was internal as well. A driveline infection can be fatal.  

A few months later, there were signs of clotting in the pump.  Since the pump is made of titanium, a clot or signs of clotting cannot be seen directly.  Experience of the cardiologists and some blood tests are the bellwethers of clotting, which can be fatal.

As a consequence, I spent from November through late May, 2013, as a hospital patient.  I returned to Fargo, observed my 69th birthday on June 2, and got the call(there had been two prior dry runs) that a suitable donor heart was available.

That was June 8, 2013.  The miracle of a new heart happened.

I had no idea what to expect when I got the LVAD and certainly had no expectation of ever receiving a donor heart.  I'm convinced that most people do not know what to expect.  

I am grateful for the three-plus years of life the LVAD gave me. A new heart is another ball game entirely.  I wouldn't want a do-over.  Too much stress on wife, family, and friends.  But I'm here to begin 2014. I'll be doing it a day at a time as we all do but with enhanced appreciation for being above ground.

What got me through was determination not just my own but that of my caregiving wife, children, friends, and the whole team of physicians and nurses who got me through the odyssey so far.

Everyone knows there are no guarantees in life. I awake with a smile and thankfulness for another day that I did not expect to see. 

Syndicated columnist Sidney J. Harris once wrote:  "When I hear somebody sigh 'Life is hard,' I am always tempted to ask, 'Compared to what?' 

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."