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Thursday, May 21, 2015

Almost Two Years Post-Transplant and Counting

Walking in the desert for several weeks gave me a better appreciation for what matters most: being healthy and enjoying life.

On June 8,2015, I will pass the two year mile stone for survival after a heart transplant.  Amazing.  My second "heartaversary."

My cardiologist has changed twice since June, 2013, and, as would be expected, there have been the predictable and some unpredictable troughs and triumphs.  Stay in the game as best you can, is the advice I give, if asked. 

A day at a time. That means take care of what you have and try to live in the moment.  It is harder than it sounds since so many of us are driven by our calendared future events.  The track of the past is only a history of where we have been and is no predictor of any future plans or promises.  

That is not to say that I do not make plans because I do.  But planning guarantees nothing.  You can plan the plan but not the outcome. Times, conditions and things change.  I am not prone to philosophical thinking.  These are not pearls of certitude.

I am pleased to be here to see another birthday, another heartaversary, and another cardiologist.

Some words to leave you with that are powerful to me:

     Without the organ donor, there is no story, no hope,
no transplant.
     But when there is an organ donor, life springs from death, sorrow turns to hope, and a terrible loss becomes a gift. 

                                       --United Network of Organ Sharing.







Monday, January 26, 2015

Greetings from Arizona's Sonoran Desert


First of all, I'm grateful to be here to enjoy life in the desert. It has been nearly five years since heart failure literally stopped me cold. 

A HeartMate II left ventricular assist device, a battery powered internal heart pump, kept me going for 1,161 days as I waited for a suitable heart for transplant. When you're on a transplant waiting list, there are no guarantees.  The wait for me was just over three years but I am most fortunate.  I am heart recipient number 788 in the University of Minnesota Heart Center's continuing transplant program, having received the gift of life June 8, 2013.  But back to the desert. I've been hiking in the desert almost daily for the last several weeks.


The desert landscape is fascinatingly beautiful and potentially dangerous as well.  The transplant team at the U of MN cleared me to travel out here and enjoy some warm weather.  Warm at this time of year is in the 60s during the day.  That's 60 degrees above Zero. 

The desert is unique for a person more accustomed to leafy trees, flowing water, still water, flat land and rolling hills, and growing grass. 

Here, east of Phoenix, the mountains rise all around forming a valley. You can see a pollution film, a haze hanging over parts of the valley. It's common most days and causes breathing alerts.

Breathing is actually a large part of the potential danger of the desert. For those with suppressed immune systems, airborne fungus spores are the menace. It's not the scorpions, poisonous snakes or gila monsters that pose the problem, but simple airborne spores. 

The spores are in the ground but after a rain the wind stirs them up. Farming, road construction, general construction activities disturb the soil and fungal spores, too tiny to be caught by the average surgical mask, come to the surface and can be carried hundreds of miles through the air. Therein hangs the tale. 

It's called Valley Fever and you never see it coming. The federal Center for Disease Control calls it a "silent epidemic." Persons affected often get a bronchitis or pneumonia-like condition. There is no proven vaccine. The disease usually clears up  on its own but it can recur or be permanent and is sometimes deadly, especially for those with compromised immune systems.

Oral anti-fungal medications for humans have proven effective in serious cases. But dogs and cats as well as all mammals in zoos and in the wild are susceptible.

The endemic areas where the infection is present includes the southwestern United States: Arizona, New Mexico, Utah, Nevada and California.

Two state prisons in Southern California on the western edge of the San Joaquin Valley recorded 3,000 cases per 100,000 people in 2005-06. A lawsuit against the state for permitting inmates to be subjected to Valley Fever conditions. A receiver appointed to oversee the prisons ordered susceptible inmates to be moved out of danger.

The incidence of Valley Fever varies widely.  Here in Maricopa County Arizona around Phoenix there were 3,450 cases reported in 2007, which converts to 1 case per 100,000 persons in an estimated population of 3.8 million.

By contrast in New Mexico there were 35 cases reported in 2008 and 23 cases in 2007. Those figures are for the entire state and converts to 1 case in 56,685 persons.  The estimated population of New Mexico was 1.9 million.

Valley Fever incidence is on the rise nationally. In 2011 the reported number of cases nationally was 42.6 per 100,000 persons.
That was an increase from 1998 of 5.3 per 100,000 people. That's a significant almost explosive increase.

As for prevention, that is a difficult question in a Valley Fever endemic area.  If you're here, you are potentially exposed.  So stay out of blowing dust and dust storms.  You can see the serious dust storms--haboobs--coming from 20 to 30 miles away. They don't happen often, fortunately.  Since you cannot see the micro sized spores, stay out of high wind situations.
  

Tuesday, December 2, 2014

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.




Wednesday, September 24, 2014

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.




Saturday, September 20, 2014

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

Wednesday, August 20, 2014

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