Transplants: an update

The focus of this blog has been living with an LVAD and, now that I have a new heart, life beyond having a left ventricular assist device.  

The world of transplantation of solid organs--kidneys, livers, hearts--is undergoing landmark changes.  

Remember that one in three persons on a heart transplant waiting list will die before he or she receives a heart. Others die awaiting other solid organs as well.

A friend got a liver via transplant and is doing well. I've been posting about heart transplants but saw an article in a British newspaper about a live birth from a woman with a transplanted uterus. 

And two mothers in Britain have donated their uteruses to relatives who could not conceive a child.

It happened in Sweden and will be reported in the British medical journal, The Lancet. A British woman is expected to give birth later this year in the same manner with a womb transplant.

Then there was the news from Australia that surgeons successfully transplanted three heart that had stopped beating, essentially a cadaver heart or a dead heart. 

The process involves injecting a specially formulated solution into the "dead" heart and then placing it in a box that supplies it with blood and nutrients until it can be transplanted.  

It took doctors 12 years to develop the method. So far it has been used only in Australia.

As it is now, the basic practice is to remove and place on ice for transport, and to transplant a donated heart within a few hours of the time it is taken from the donor.  

Icing the donated heart can cause damage to the muscle tissue of the organ, making it more difficult for the recipient to recover fully. 

The "heart in a box" technique could minimize damage to the heart muscle and aid in recovery.

Miraculously, I received a heart transplant after 38 months and six days with an LVAD. Apparently my new heart was damaged during the "keep it on ice" process, because it didn't work properly for a week.  

At a year and a half down range from transplant, things are going well.  But as the immortal Satchel Paige has been quoted as saying:  Don't look back. Something might be gaining on you.

Become an organ donor the American way and save lives

The organ transplant program in the United States is based on the spirit of volunteerism. That is not the case in other parts of the world. This post is about China's murderous system of organ theft from live "donors."

We have an "opt in" system in the United States. If you want to be an organ donor in this country, you have to say so.  Typically, a person wanting to be a donor, says so on his/her driver's license. 

Telling next of kin, family, or significant others that you want to be a donor is acceptable.  Even those who make no election before they die can have their organs (heart, lungs, kidneys, liver, pancreas, bone marrow, skin) harvested with approval from next of kin. The U.S. system uses only volunteers, there is no coercion.

However, electing to be a donor on one's driver's license guarantees nothing.  A person has to die under "hospital conditions" and be on life support to be eligible to donate anything.  Those who die in traffic accidents, for example, do not qualify. Their organs die with them.  Live organs are required.

Most European countries have an "opt out" system of donor registration, meaning that all drivers are prospective donors. They must physically "opt out" of the system telling the driver licensing  or other authorities that they do not want to be registered donors. It is still a voluntary system.

China's "system" is a different story. Organ transplants are a growth industry sanctioned by the Chinese Communist Party.  The government sponsors the collection of organs, hearts, kidneys, livers among others from live prisoners.  There is no "voluntary," (not to mention) lawful system of organ collection for transplants.  

The "business" of organ transplantation involves the prisons,  military,  police, and doctors and surgeons and  hospitals.  They all collaborate to traffic in human organs. With its population of 2 billion or so prospective donors, China's prison system targets organs of all types. Organ trafficking is lucrative.  China has no organized system of organ donation.

Mostly the targets of forced organ donation have been adherents of Falun Gong, a spiritual movement founded by Li Hongzhi, now 63. He has since left China and lives in the United States. 

Falun Gong is based on Buddhist teachings and discipline. Practitioners combine choreographed "slow" movements and meditation with a moral philosophy based on truthfulness, tolerance, and compassion. Master Li first taught the practice publicly in 1992 in northeast China. Soon Falun Gong adherents exploded in numbers, exceeding membership in the CCP.  Adherents were persecuted by the government.

The Chinese Communist Party saw the movement as a national security threat and in1999 the CCP began a push to exterminate. Falun Gong practitioners in all of China.

Amnesty International said the CCP launched a multifaceted extermination campaign that included anti-Falun Gong propaganda, a program of enforced ideological conversion and re-education, forced labor, arrests, torture, even death to those who would not renounce the movement. Torture and death of Falun Gong practitioners became a ready source for organ trafficking.

A Wikipedia article on practitioners of Falun Gong reports that: "A...(special unit of government) called the 6-10 Office was created to lead the suppression of Falun Gong. [A]uthorities mobilized...state media, judiciary, police, army, education system, families and workplaces against the group.

"...There are reports of systematic torture, illegal imprisonment, forced labor, organ harvesting and abusive psychiatric measures with the apparent aim of forcing practitioners to recant their belief in Falun Gong."

It has been estimated that Falun Gong practitioners, numbering in the millions, have been targets of what amounts to a pogrom. Easy pickings and easy profits for dedicated organ traffickers in search of "matches." Transplants are arranged by middlemen between forced donors and those, mainly tourists, seeking a transplant. Specific dates for the transplant operation are selected in advance.

When a "match" occurs, hearts and kidneys are literally ripped out of  the targeted "forced" donors. The organs are then sold for transplants. 

Prison populations, where Fulan Gong inmates makeup a large percentage of inmates, are culled for donor matches. When a client, willing to pay tens of thousands of dollars for an organ, the search and collection process kicks into high gear. A prisoners' health data and blood type cause prison officials to select them for involuntary donations.

It has been reported that prison officials and police, who get money for organs pillaged in this way, create conditions and circumstances where the targeted "donor" is forced into physical decline.  Selected prisoners are killed over short period of time by their mistreatment, malnourishment, drug therapy that doesn't effect the organs' viability.

There is a group dedicated to ending the lucrative practice in China. Its called the International Coalition to End Organ Pillaging in China. Ethan Gutman is one of the directors of the IDEOPC.  As a journalist, he's been doing research of China's organ donation/transplant system.  In his book, The Slaughter, published last month, Gutman estimated that some 65,000 Fulan Gong practitioners were "killed" for their organs between 2000 and 2008.

The CCP considers the death of a Fulan Gong practitioner as "suicide," giving hospitals the right to harvest organs without any formal procedure.  The organ harvesters can schedule the "murder" of a donor to permit the "tourist" recipient to make travel arrangements.  The wait for an organ in China is typically one to four weeks, while in he United States, it may be years for a would be recipient's wait on a transplant list. In fact at least 18 people die each day in the U.S. waiting for a life saving organ.

I'm reading Gutman's book so there will be more to this story.

Never a dull moment: dance like nobody's watching

Having a new heart gave me a second chance. A gift of life.  

By themselves, second chances are rare.  I'm not talking about do-overs but continued existence in the here and now.

A second chance for life is a magnificent gift and I am grateful everyday.  I am hopeful that all my brothers and sisters with LVADs who are eligible for second chances, get them. There are things that matter that a new heart's potential makes possible.

For example, while I had my left ventricular assist device, my wife and I were able to see, talk to, hold and hug our granddaughter, Aria, now 3 1/2 (going on 25), a couple of times.  Travel by air was an ordeal with my bionic device and all the gear I had to carry.

This year Aria came to our son's August wedding with her mom and dad. They traveled from Connecticut to Fargo. It was a delight being around her.  We even danced at the wedding. 

I'm six feet tall and she is about 3 feet tall, which is stretching it a little. In the end I held her in my arms and cut the rug.  We had fun, fun, fun (and no one took the T-bird away, with apologies to the Beach Boys).  A new heart brings hope.

There is some good news about left ventricular assist devices.
Thoratec, the California based developer and manufacturer of the HeartMate II, which kept me alive for 38 months plus, is now testing the HeartMate III in clinical trials.  LVADs are hope perhaps the only hope for those who need a new heart.

The new device aims to solve some of the issues that surfaced with the HM II, such as reduction of friction (which causes wear and heat), and "friendlier" blood contact surfaces that ease the flow of blood without shredding cells (the point of this is to keep blood clots from happening in the pump). 

Meanwhile, some 17,000 cases of heart failure have been helped by the implantation of HM II.  No small feat. The implantation of LVADs has surpassed heart transplants. Here is a link for further reading:  http//www.thoratec.com/vad-trials-outcomes/ongoing-clinical-trials/hmiii-usa.aspx

Dog days of summer 2014

Dogs surround us in fact, in legend, in literature, and in daily life references.  My factual/actual dogs, Watson, a 10 pound miniature dachshund, and Teddy, an 18 pound Peek-a-Poo, I call "the subwoofers."  

They're comforting, mischievous, entertaining--sometimes all at once.  They don't ask much and are faithful, always greeting returning humans with enthusiasm.

The language is full of dog references. Like dog-and-pony show, dog days, dog ear, dog-eat-dog, dog house, dog-in-the-manger, dog leg, dogs of war, hair-of-the-dog, dog paddle, dog tags, dog tired, dog trot, dogsbody, dogged, to list a few.  Hounds get similar but lesser treatment: chow hound, hounding (hot on the heels of), houndstooth (a cloth pattern) etc.

From Argos (Homer's name for Ulysses's dog) to Yukon King(wolf dog of Sergeant Preston of the Royal Canadian Mounted Police of radio/tv drama fame, dogs are with us to stay.

E.B. White, author of Charlotte's Web. wrote a charming letter about his dachshund, which I have appended below.

12 April 1951

The American Society for the Prevention of Cruelty to Animals
York Avenue and East 92nd Street
New York, 28, NY

Dear Sirs:

I have your letter, undated, saying that I am harboring an unlicensed dog in violation of the law. If by “harboring” you mean getting up two or three times every night to pull Minnie’s blanket up over her, I am harboring a dog all right. The blanket keeps slipping off. I suppose you are wondering by now why I don’t get her a sweater instead. That’s a joke on you. She has a knitted sweater, but she doesn’t like to wear it for sleeping; her legs are so short they work out of a sweater and her toenails get caught in the mesh, and this disturbs her rest. If Minnie doesn’t get her rest, she feels it right away. I do myself, and of course with this night duty of mine, the way the blanket slips and all, I haven’t had any real rest in years. Minnie is twelve.

In spite of what your inspector reported, she has a license. She is licensed in the State of Maine as an unspayed bitch, or what is more commonly called an “unspaded” bitch. She wears her metal license tag but I must say I don’t particularly care for it, as it is in the shape of a hydrant, which seems to me a feeble gag, besides being pointless in the case of a female. It is hard to believe that any state in the Union would circulate a gag like that and make people pay money for it, but Maine is always thinking of something. Maine puts up roadside crosses along the highways to mark the spots where people have lost their lives in motor accidents, so the highways are beginning to take on the appearance of a cemetery, and motoring in Maine has become a solemn experience, when one thinks mostly about death. I was driving along a road near Kittery the other day thinking about death and all of a sudden I heard the spring peepers. That changed me right away and I suddenly thought about life. It was the nicest feeling.

You asked about Minnie’s name, sex, breed, and phone number. She doesn’t answer the phone. She is a dachshund and can’t reach it, but she wouldn’t answer it even if she could, as she has no interest in outside calls. I did have a dachshund once, a male, who was interested in the telephone, and who got a great many calls, but Fred was an exceptional dog (his name was Fred) and I can’t think of anything offhand that he wasn’t interested in. The telephone was only one of a thousand things. He loved life — that is, he loved life if by “life” you mean “trouble,” and of course the phone is almost synonymous with trouble. Minnie loves life, too, but her idea of life is a warm bed, preferably with an electric pad, and a friend in bed with her, and plenty of shut-eye, night and days. She’s almost twelve. I guess I’ve already mentioned that. I got her from Dr. Clarence Little in 1939. He was using dachshunds in his cancer-research experiments (that was before Winchell was running the thing) and he had a couple of extra puppies, so I wheedled Minnie out of him. She later had puppies by her own father, at Dr. Little’s request. What do you think about that for a scandal? I know what Fred thought about it. He was some put out.

Sincerely yours,

E. B. White

My pair of subwoofers are a delight.  They became dearer to me after my heart transplant and remain so today 14 months later.

So even in the dog days of summer, the hottest part of the year, when things are sluggish and calm, I delight in my subwoofers.

Fly fishing again: the gift of a new heart

Memorial Day weekend is the usual Minnesota bass fishing season opening. With the HeartMate II for 38 months, I missed a few openers.

But this year, sans LVAD and feeling good with my new heart, I got to go fishing with my son on Big Detroit Lake, 50 miles east of Fargo.  My new heart keeps giving me gifts. Going fishing might not seem like much of a gift to the able bodied  but to me it was sublime. 

This year I am waterproof and do not carry lithium ion batteries to power my heart pump and do not have to worry about sudden immersion like falling overboard.  Sudden or any immersion with an LVAD was no joke. You short out the pump/electrical system and you may short out your existence. 

Although last year I became waterproof I wasn't physically up to being an active fly fisherman.

I am holding positive thoughts for a friend waiting for a new heart at Abbott-Northwestern Hospital in Minneapolis. Some of his wiring is wearing out.  

It is the Achilles Heel of the HeartMate II system, the internal driveline, which carries power from his batteries through a paperback sized computer on his waist. The driveline has frayed at the pump. The pump is internal and the driveline is too. What to do? Replace the pump or wait as an inpatient in the hospital for an acceptable match. His attitude is good.  As an Army Ranger, he knows how to adapt and overcome.

The fraying has caused temporary--so far--short circuits, which have reduced the pre-set speed of his pump.  Mine ran at 9200 rpms, hence the running title of this blog.

When a short circuit happens, and there is no predicting when one will occur, the pump drops in speed, slowing the flow of blood to the heart and major organs.  

A short circuit could cause the pump to fail and stop working.  The result simply stated could be death.
You can read about his situation on his blog,
www.waitingforanewheart@blogspot.com

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.

Another form of rejection emerged this week

For me as a relatively new human heart transplant recipient I find the adage "there's always one more s.o.b. than you counted on" is painfully true.

I'm back in the U of MN hospital for a stab at overcoming a suspected organ rejection episode. 

The newly (for me) type of rejection is biopsy negative rejection or BNR for short. In overview, BNR has to do with antibodies in the blood that have developed and may be silently attacking my new heart. It is thought to be rare, but has been picking up investigative attention.

As the name suggests, BNR falls in between the lines.  Although my biopsy procedure at the U of MN is designed to weed out the two more common rejection forms and reveals those forms, cellular rejection and a limited number of antibody rejection factors.

BNR is one of those grey areas that only a few institutions are actively investigating. The Johns Hopkins University Medical School is one of them.  I've learned there are hundreds and hundreds of antibodies that could show up in the blood.  

The well known ones are identified by a staining method, which produces a colored microscope slide that is interpreted by a pathologist.  But not that many antibodies that impact rejection are well known and those that are are caught by the current process at U of MN's lab.

So I'm generalizing when I say that the learning curve for heart transplant patients has some hidden elements that apparently surface on a need to know basis. 

Well this week, it became my need to know. My ejection fraction seemed to mysteriously drop from 60-65 per cent efficiency to 40-45 per cent efficiency. What happened? I feel good. What's causing the problem.

Turns out that my transplant cardiologist is doing research on BNR with her mentor at Cedars Sinai Hospital in L.A.  Cedars performs more heart transplants than any other U.S. transplant center. Eighty have been done this calendar year to date with six in the last week.

That was news to me, but pleasing news. When my doc asked to see a copy of the article in the January 2013 issue of the Journal of Transplantation, she recognized the author as one she's known a long time and is her mentor.  Here's the link. http://www.hindawi.com/journals/jtrans/2013/236720/ 

I'm hopeful that my cardio team will get this sorted out. The Johns Hopkins lab results are not expected for several weeks.  Meanwhile I underwent another right heart (site of the 'new' heart) catheterization for biopsy samples and pressure checks.  It is unusual to order two such procedures in two days but the situation demanded it.

Meanwhile, I'm composing my unaddressed letter to my donor family to thank them for my gift of life from their selfless family member.  I wanted to wait a year.  

Federal law bars hospitals from identifying participants in a transplant procedure without their permission.  I write first.  Maybe I'll get a response.

At any rate I'm here, alive and waterproof. This amazing saga continues. Now if I could only catch a fish.

First "Heart-aversary"

A year ago June 8, I received a heart transplant. Not exactly breaking news, right?

Despite some formidable setbacks both expected and unexpected, I survived the first year.  Thrived might be a better word. In my age group, the first year survival rate can range up to 80 per cent.  

Sounds great, except for the 20 out of 100 who don't see their first "heart-aversary."

From the edge of a crypt in early 2010, through 38 months with a left ventricular assist device to a walking, talking, fly fishing 70 year old. 

I am most fortunate.  

Not all of those in need of a new heart get one.  First, there are about 2,000 heart transplants a year nationwide. Second, the donor ranks are thin. Marking "donor" on your driver's license doesn't mean your heart, liver, or kidneys--for example--will be taken if you die in a car accident.

Anecdotally, as I renewed my driver's license last week, I overheard six people in line with me say they did not want to be listed as donors. 

My wife and I chose "donor." 

So in my anecdote, 75 per cent of my admittedly skewed sample said no to being a donor. It was not a particularly busy time at the licensing facility, but if the situation I encountered is in any way  representative, and we'll never know if it is from a one sample  experience, organ donation is not at the top of the "to do" list of things we can control. 

That's a shame.  Donating an organ is a gift of life for recipients.

I am reliably informed that only about one in one hundred deaths occur under hospital conditions that are a necessary precursor to organ donation and eventual transplant.  

The donor organs simply are not collected at the scene of a vehicle crash, shooting, stabbing, drowning, or a victim of smoke inhalation. Hospital life support is required. 

The point is that without designated donors there would be no transplants, no lives saved, no hope. None. Period. Game over.

Meanwhile, my friend with the fractured LVAD driveline, has been moved from Abbott-Northwestern Hospital in Minneapolis to Cedars Sinai Hospital in Los Angeles. Without a new heart, it is likely he won't make it. 

There is hope at Cedars Sinai, the largest and most technically advanced heart transplant center in the country, doing 120 heart transplants per year and being able to deal with issues with anti-bodies and rare blood types. His doctors believe the move is necessary to save his life. 

Godspeed, friend.

Milestone: 11 months and counting, day by day

May 8 came and passed.  It is significant to me because 11 months ago I was in the process of receiving a heart transplant. Talk about second chances.

My faithful companion, a HeartMate II left ventricular assist device, was disconnected during the procedure.  I was present but unaware of the transplant or the LVAD disappearing from my life. 

It kept me going for 38 months, months I would not have had without it.  Thirty eight months was a long time.  The last 11 months bring the added span to 49 months.

Who knows what tomorrow will bring?  For now, I'm among the living for a while.  Don't get too cocky, I tell myself.  I've viewed first hand how everything can change in an eye blink.

Meanwhile, son Kevin and I attended the annual trout fishing season opening day last Saturday in central Wisconsin.  It was a treat for many reasons.  The primary one being that I was there.

My friend and newspaper colleague greeted me with a "Welcome corpse.  It walks and talks."  We watched the 1974 Mel Brooks' movie the Young Frankenstein, starring Gene Wilder.  I don't believe in coincidences.

Another friend is waiting for a new heart in Abbott-Northwestern Hospital in Minneapolis.  His HeartMate II is giving up the ghost, driveline is separating from the pump itself, which could kill him. His cardio team ordered him into the hospital for the duration. He is the younger of a father and son team, both having LVADs a the same time.  The son, my friend, didn't let a bum ticker slow him down much.  He did the Insanity Workouts, for example, progressing through most of the levels.  I get tired just watching the easiest video.  At any rate, he's been 1-A for five months and counting.  A strong spirit for sure.

To all those readers who know or are related to a transplant recipient or a would be recipient using a mechanical life support device, you know what I mean when I say easy days are a wish but if wishes were horses then everyone would ride.  Attitude is everything for those of us who have taken this road to transplant and beyond.  

Annually for 40 some years a group of newspaper reporters, businessmen, and assorted raconteurs have met on or near the Mecan River in Central Wisconsin to mark the start of trout season. 

It's always the first Saturday in May, which sometimes conflicts with Mothers' Day weekend.  About 20 years ago, the group shifted from its Mecan River site to the South Fork of Wedde Creek.   It's a mile as the crow flies from the Mecan. I've attended many trout opener gatherings over the years.

I've been fly fishing for trout and bass for nearly 50 years and joined the group after the move to Wedde Creek. The point is that I was unable to attend last year because of complications with my LVAD.  

Little did I know that I would get a second chance at life with a new heart in early June, 2013. At any rate, son Kevin and I (now waterproof once more) are headed east 500 miles to join chums and colleagues.  The donated heart gave me that chance. 

Trout are no longer at the top of the list of opening weekend activities as most of us are in our 70s and up. The eldest is 86, but he still fishes. I wet a line but routinely get skunked. But the camaraderie is priceless.  Being outdoors along a trout stream is priceless. 

We have all learned, like Thoreau once said, "some men go fishing all their lives and never realize it is not the fish they are after."

As I get to my 11th month post heart transplant, I am more grateful than ever for the gift of life.

Biopsy Procedure is a Heart Transplant Necessity

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thoughts on getting a new heart: it's a team effort

After my most recent visit to the U of MN Heart Clinic in Minneapolis last month, I came home thinking how little I know about heart transplant after care. 

I have become aware that everything that happens to the other organ systems post-transplant is interrelated. 

A heart transplant can cause a myriad of unexpected consequences.

The anti-rejection medications interact with other medications and issues arise.  The suppression of the immune system is unpredictable and you can more readily develop infections from bacteria, viruses and fungi.

The point is I don't know what I don't know. Fortunately, the cardio team finds answers.  Experience counts. And they all have the help of other transplant team consultants.

 I now have

--one principal cardiologist and a host of heart consultants (the cardio team has the final say about my care and treatment); 

--a nephrologist for my kidneys, which seem to have issues that are likely drug induced based on my regimen of the anti-rejection meds;

--an infectious disease doc, sorting out my pneumonia susceptibility; 

--a dermatologist, sorting out pre-cancerous lesions;

--an endocrinologist, helping me with steroid induced diabetes;

--an ophthalmologist, helping with drug induced eye issues,  and 

--a consulting transplant pharmacist.  

That's at least a thimble full.  There will undoubtedly be more.

Every day brings a challenge and a new issue, it seems.  No one promised fair winds and following seas.  The new heart is only the first step.  Clearly, it takes knowledge and work to maintain and to keep the gift of a new heart. 

Without the help and support of my caregiving wife, I literally would not be here. She is at once: a factotum; an advocate, ever  vigilant and an effective cross examiner of the team of doctors and nurses.  She gets answers and results.

It takes time to accept the reality of the constant vigilance and preparedness.  My next scheduled clinic follow up is later this month.

Over the drill ground (called the grinder) at Coronado, California, home of Navy SEAL training, there is a slogan on the building that fronts the drill area:  

                                The only easy day was yesterday.

The SEALs are a "mission driven" outfit.  When a SEAL team completes a mission, and survives--often in the face of death--the team faces a new day and a new mission.  The implication is that surviving yesterday guarantees no easy future.  So "the only easy day was yesterday."

The slogan takes on new meaning for me with each passing day. The saying was first used when the SEAL teams were formed during the Kennedy Administration. 

If it's good enough for them, it is more than good enough for me.

Eight months and counting: not at full throttle yet, noticing improvement

I'm not Polyannaish, but all things considered, I'm doing more and feeling better each day.  It is hard to accept that I'm eight months down range from transplant. But the calendar says so.  The good saga continues.

Dwelling on yesterday's problems, is a poor use of time, not to mention emotionally draining.  As Will Rogers once quipped,  "Don't let yesterday use up too much of today." That sums up an attitude that works.  Makes sense, but takes practice.

It's about minus 20 F. here in Detroit Lakes, Minnesota, as I survey the frozen lake tableau out the lakeside windows. It's a weekday, so the snow machines are quiet, the only evidence of them are the tracks. Being here is a significant plus.  There is no hustle and bustle.  I would not be here to experience peaceful nature in winter if not for the HeartMate II and my good fortune in receiving a transplant.

The only critters moving in this weather are the occasional rabbit, a murder of crows, and a few hawks, mostly red tailed hawks.  Whether the groundhog saw his shadow last week, is immaterial at this latitude.  There will be snow until late April at least.

I return to the U of MN next week for more tests. Kidneys are not filtering as well but no need for dialysis yet. 

Immuno-suppressive meds are still in the adjustment mode. Steroid induced diabetes is gradually moving toward the normal range. Overall, no complaints.  I continue to have swelling in the lower legs and feet.  Thigh high compression hose help. And the 10 minutes I spend wrangling them on is a little inconvenient but no bigee.

The tale of a fungus and other recent developments

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

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

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

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

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

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

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

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

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

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

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?'