THE KIDNEY DILEMMA

Some thirty-five years ago, when organ transplants began to take root as a viable medical procedure that saves lives, the controversy also began. Before a regulated list came into being, donors and recipients were matched according to need, compatibility and availability. Thankfully, I was among the first to receive a liver thirty years ago, which brings me to the topic of this blog post.

Human beings are born with two kidneys, a right and a left one. They are located towards the back, on both sides of the spine, below the rib cage. Kidneys are a little larger than a fist. They perform all kinds of functions one of which is allowing us to urinate. A human can live very well with one kidney, I should know, I only have one…a transplanted one.

Kidney trafficking has become widespread, especially in poorer countries, and newly autonomous countries still struggling to take shape. It’s illegal to sell your kidney for profit; and yet it is done pretty much everywhere. The law of supply and demand. Poor countries, like the Philippines for instance, have a thriving, willing and able kidney donor population. A family living off of $800donationm  a year will gladly give up a kidney they don’t need for the price of two years wages or more.

In the slums outside of Manila, predominantly men sign up with organ brokers to become kidney donors for the price of a laptop. The money they’ll earn, $1600.00 to $2500, will allow them to move to the country, buy a house or a piece of land and start a business. Of course plenty blow the money within a year, but others find a way of lifting their families out of the abject conditions of the slums to slightly less abject conditions in the countryside.

Meanwhile, here in the US, kidney donation by law must be altruistic. And thus, the waiting lists are anywhere from four to six years. Something is wrong with the entire picture. In fact, illegal donors as well as the regulated kidney donor list are both out of touch with reality and defeat the purpose entirely. On one hand, the legal avenue isn’t viable. Worldwide 118 people an hour die while waiting for a kidney. On the other side of the spectrum, the poor donors aren't getting fair compensation.

In Turkey, Dr. Yusuf Somnvez performed countless illegal kidney transplants from a hospital in Kosovo called Medicus. Aiding him in this extensive network undertaking were Moshe Harel, the surgery logistic man, and Dr. Zachi Shapira a prominent kidney transplant surgeon. In an interview with Dr. Shapira who lives in Israel, he continues to question the validity of a law that, as it stands, means a death sentence to so many.

Meanwhile, in Canada Mary-Jo’s mother, who’s been on dialysis for 18 years, sits in a wheelchair, her arms distorted from so many needles. She’s fifty-three and looks like she’s eighty. Her muscles have deteriorated, her energy level is non-existent and her skin is that of an old lady. Mary Jo herself is on a kidney transplant list in Ontario and has been waiting for over eight years!

Dialysis is a temporary solution, but not an alternative to kidney failure. The best option today is transplantation. The demand in Western counMedicustries far outweighs western supplies. As things stand 10 to 15% of kidney transplants are illegal. Raul Fain was in need of a kidney. He chose the illegal route with Dr. Yusuf Somnvez. The pre and post care at Medicus in Kosovo, according to him, was flawless. His donor, Anna from Moldova, spent some time at the hospital as well. She was compensated with $12,000.00. She was happy to help someone out and to get much needed cash. The entire experience was smooth and professional both donor and recipient said.

However Interpol views this transaction as an international crime and has been chasing Dr. Somnvez and his aids for years. Raul Fain paid $120,000.00 for his surgery, which included bribing local police to warn the doctors when detectives for Interpol would show up and check Medicus’ activities. According to Dr. Shapira, they would put casts on all the patients (sometimes 7 or 8 were transplanted in a day) and when detectives checked, they only saw people recovering from "broken" arms and legs.

Interpol is facing an uphill battle. Organ trafficking will continue as long as poor people will need money, and wealthier people are willing to pay for life. Illegal donor lists in the Philippines (apx.$1600 per kidney), Egypt ($2000), India ($1000), Moldova ($12,000), China ($2500) continue to grow, and with it, the potential for mishaps. Like the broker in the Philippines said, “When the guy comes back from the hospital to the slums and waves his hand flashing all that cash, the others get jealous and are even more eager to become donors.”

Interpol doesn’t stand a chance. The system is broken. For it to work, it needs to acknowledge the needs of all parties. The moral issue, “Selling your kidney for cash is wrong,” doesn’t hold up. It’s asking the wrong question. The moral issue should be, “How do we help as many people as possible”? As things stand, the moral issue is immoral. Patients die waiting, and poor people living in squalor get taken advantage of. No wonder Dr. Shapira is considered a hero in Israel. He has saved over 3600 lives, many of which illegally. Does that make his actions less honorable? I think not. Just ask those he has saved.

THE BOOK

I began writing my book more than ten years ago. I had just survived a very difficult and serious second liver transplant. It seemed like the appropriate time to seek closure from years of illness. The process of writing a book took much longer than I had anticipated. I had heard this cliche before and was sure it wouldn't apply to me. Yeah right...

I sat at the old graphics design table in the quietest room of our house one night, and began to write. Before connecting pen and paper, I asked myself, how am I going to do this when I've never written anything before, especially never in English? I spoke well enough, but did that mean I could write an entire book? Maybe I should write it in German.

I decided to write in English. The majority of my hospital stays had still been in Germany up to that point, but the transplants had taken place in the U.S., and therefore medical expressions and terminology were at the tip of my tongue. The first outline was done within a few days.

The words flowed out of my mind onto the keys of my computer and lit up its screen. A month after the outline, I had typed over 800 pages. For someone like me who is not particularly known for my memory, I was amazed that every detail was in my mind as if things had happened yesterday. It seems that traumatizing events stay with you. Once this first draft was finished, I put it away for several months. Although I had written a lot, I didn't have a conclusion to my story.

I picked up my manuscript much later and read it again. I couldn't believe what I had written. The story was fine, after all it was pretty much carved in cement since it was a faithful account of my life. But rather because I never realized how poorly I spoke English. The grammar was fine. My mother had seen to this growing up. However, expressions and wording of sentences, all of it was 'off'.

I began listening much more closely to the radio and television. Whenever a particular expression suited what I was writing about I used it. Little by little, the second and third drafts came together. Even though, I still didn't have a conclusion.

While my English was improving, my story wasn't. Not until I gave it to my husband to read did he point out the immense flaw. The solution might be simple, the execution of it, not so simple. I put the manuscript away for several more months still unsure how to fix it.

In my manuscript I had cast myself as a superhero defeating death. My story lacked honesty; honesty, first and foremost, towards myself. I had become so adept at burying my feelings in order to deal with my health issues, that I couldn't bring them to the surface anymore. I hadn't included them in my writing. The act of putting events on paper forced me to confront emotions I had never dared face before. Draft by draft I began removing layer after layer of thick skin. Like an onion, I peeled off a barrier at a time to get to the real story. I imagine this is the type of work therapists do.

By the time I reached draft number XXL, I felt as if I had spent years in therapy. The more I delved into my state of mind during my illness, the deeper the sense of relief. My manuscript was taking shape, but I still didn't have a conclusion.

Ten years flew by in a flash, but illness didn't let go of me. I wound up having a third liver transplant and a new kidney. This last physical trauma had to become my conclusion, the final chapter after twenty-eight years of roller-coaster health.

Finally, I felt confident enough to relinquish my finished manuscript to my most genuine critic. My husband's talent to take a story and find its heart proved invaluable. Once again I ended up under the knife...well, my manuscript did. He and I slashed the repetitive moments, carved out my sometimes harsh words, surgically removed all boring lengths and stitched my story together by keeping the best moments. Hopefully we succeeded.

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 THE BOOK IS AVAILABE FOR PURCHASE AT BARNES AND NOBLE

http://www.amazon.com/s/ref=nb_sb_noss/177-2814359-9266907?url=search-alias%3Daps&field-keywords=four+livers+and+no+funeral&x=0&y=0

3RD WORLD TRAFFIC

I got in my car and switched on the radio as I always do when driving back home from the gym. As usual, Larry Mantel was on, and his guest was Scott Carney. I’d never heard his name before but you can be sure my ears perked up when he said, ‘…organ trafficking.’

Scott Carney is a contributing editor for Wired magazine and an investigative reporter who used to live in India. He became interest in organ trafficking after a friend of his died there. The vultures immediately began to circle (not literally). Before his friend was dead, organ brokers came out of the woodwork, asking Scott what he intended to do with his friend’s body parts.

India is a growing economy, but there are still plenty of Third World characteristic in the way the country functions. One of these is a lack of basic, essential, well-organized, regulatory mechanisms i.e. laws on the books that are actually enforced. In this case (and countless others), it means supervised and controlled organ donation, retrieval and transfer laws. According to Carney, ever since organ transplants have become commonplace, life expectancy has risen around the world by thirty years. The problem is the means by which this life expectancy has been attained.

China is pretty much in the same boat when it comes to organ trafficking, but India seems to have the most blatant problem. On one hand, consider the 25 billionaires who have emerged from India’s steadily growing economy. On the other hand, consider over 51% of the Indian population don’t have a toilet. It would be presumptuous of me to say “don’t have a toilet in their home” because stacked cardboard boxes hardly qualify as a ‘home.’ 51% of India’s population means twice the population of the United States uses a toilet outside of their dwelling or, a plastic bags...if it’s available. Add lack of social standards, rampant corruption and mismanaged, inefficient bureaucracy to this equation and you have a recipe for exploitation.

I can tell you in all certainty that the 25 billionaires don’t become targets of organ trade rings. However I’m not so sure about the five hundred million who don’t have toilets. Everybody from broker, to doctor, authorities, hospital and donor are in on the scam. Scott Carney went on to mention a group of eighty women post tsunami so desperate to feed their family they sold their kidney for less than $2,000. When you don’t have a toilet, it sounds like a lot of money. But it isn’t. It was quickly spent, and the families ended up in even worse situations than before (is that even possible?), especially in those much too often cases where the organ retrieval hadn’t been done properly.

Speaking of retrieving an organ properly…most recently, a seventeen-year-old boy in China really wanted an iPad 2. So much so that he was willing to do anything to get one, even sell his kidney. And it was much too easy for him to do this. A broker contacted the teen on the Internet. The teen ended up following the broker’s instructions, and going to hospital #198 in Chenzhou without notifying his parents, and having his kidney removed.

This story is disturbing on so many levels. It turns out, hospital #198 wasn’t qualified to perform such a surgery. You’d ask yourself, why would they accept to do the job? As a result, the boy is having serious health complications due to…a poorly retrieved organ. China, the up and coming economy just like India, has plenty of corruption to go around. No matter how illegal, everyone is a willing participant if it means a payday. Organ trafficking has become a very lucrative way to compensate for low paying jobs, joblessness and poverty.

Now about the boy; this is an example of the increasing consumerism among Chinese youth. There’s a strong likelihood peer pressure from friends or classmates pushed the teen to these extreme measures. Perhaps he wanted to fit in. Or he fell pray to the ‘keeping up with the Jones’ mentality now rampant in the newly materialistic China. The boy received $3,400 for his organ, got an iPad 2, but might die because no one ever stopped him along the way.

No system is perfect. Here in the United States, some doctors have slipped through the cracks. In 2005, St. Vincent hospital in Los Angeles had to shut down the liver transplant department. Doctors gave a Saudi national who was #52 on the list, a liver that was meant for a near-death person. He ended up passing away. While it’s sad such an unethical decision was made, it’s also true that the checks and balances worked. A thorough investigation shed light on the fraud. Dr. Lopez, head of the transplant department, had to resign.

What is the conclusion if you live in India or China and need an organ? Best case scenario is that you’re somehow related to one of the 25 billionaires. Short of that, you’re pretty much on your own. 

TRANSPLANTS

We all know what the word ‘transplant’ means, but what exactly does it entail? I’ll try to explain the process without putting you to sleep.

Dr. Christiaan Barnard performed a successful transplant on a black woman in South Africa in 1969. She lived twelve years and six months with her new heart. In 1967, Dr. Barnard had first tried several heart transplants but the patients died. For many years the effectiveness of transplants was debated. Then, in 1981, Dr. Starzl (my hero who transplanted me in 1984) championed the anti-rejection drug Cyclosporine. Prior to then, rejection occurred almost 100% of the time. The way to stop rejection was high levels of steroids, which ended up killing the patient. Once Dr. Starzl found the solution to keeping patients alive (Whew! Am I glad…), other transplant centers came into being, and with it a need for regulation (1984).

All transplant candidates have been evaluated and suffer from confirmed end-stage organ failure. At that point they are placed on ‘the list.’

The list, that mysterious word every transplant patient pronounces with pathos, becomes the first step on the long road to an operating room. The list is kept in Richmond, VA at a place called the United Network of Organ Sharing (UNOS), a complex national bank of organ data, which it collects and manages. UNOS operates twenty-four/seven, continually updating and changing the list as information becomes available.

Being on the list is not a linear thing. One doesn’t get a number and wait in line. The list is actually a pool functioning according to patient data. This patient data is regularly modified to ascertain placing on the list. A score called Model for End-stage Liver Disease or MELD score is one of the many criteria used. It’s based on certain levels in a candidate’s blood test: the worse the levels, the higher the score. This information and other such as organ, blood type, tissue, size and match will determine the candidate’s position.

But wait…there’s more. UNOS, the headquarters of the list located in Richmond has tentacles. They’re called OPOs or Organ Procurement Organizations, to be precise eleven of them scattered throughout the United States. These organizations see to it that donated organs from their specific region get used at their transplant centers first. If an organ cannot be used in their region, then it goes to the next closest OPO region. Should it not be needed, the organ will be free for distribution to any other transplant centers in the country. The reality though, is that the majority of organs are used in their OPO region. Because the list is a pool, patients’ waiting time varies. All things being equal, it’s the patient with the greatest need that will be transplanted first.

Are you still with me?

The average waiting time for a heart is from three to eight months, a liver eight to fifteen months, a lung fifteen months to two years, a kidney three to five years. Currently there are between 80,000 and 100,000 people waiting for an organ. On average, eighteen people die every day waiting. 15,000 people are added to the list yearly.

There are plenty of horror stories out there with respect to organ retrieval. I should know. My husband was offered a script about steeling kidneys in India. I’m glad he didn’t make that movie. To be fair, the script was exciting: the topic lends itself to an action flick. But when I read it, the flaws were too obvious, which, for someone like me, is unacceptable.

Transplant myth A: “If you die, your organs will be taken without your consent.” You cannot take an organ from a dead person. If the heart has stopped beating and oxygenation of the body has ceased, so has oxygenation of the organs. Organs can only be retrieved from the certified brain-dead. That person has zero or very little brain activity, and therefore, is a corpse with blood flow and oxygenation of the organs. There is no recovery from brain death. Period.

More recently ‘non heart-beating organ donation,’ is experiencing resurgence. If you’re in the hospital and have a directive to become an organ donor, after your heart stops and you are proven dead (checks and balances) your organs are retrieved before they deteriorate. This practice has helped narrow the gap between donors and recipient.

Transplant myth B: “There’s a black market out there for organs.” The United States does not have an organ black market. There are no hidden, fully equipped, sterile, state-of-the-art operating rooms floating about where people are kidnapped and anesthetized to harvest their insides. Everything regarding transplants of any kind, be it living donor, tissue or organ is regulated and verifiable.

Transplant myth C: “If I say I’m a donor and I’m in the hospital they might let me die.” The person who came up with this conspiracy theory has obviously never been in a hospital. Need I elaborate more than to say that doctors, nurses, orderlies, more nurses and more doctors pass through your room at all times? The likelihood of something getting past them is as unrealistic as a mother committing suicide to give her remaining kidney to her daughter. The script definitely needs a rewrite.

But, forget the myths and the regulations. None of it would mean a damn thing if not for the most important component to organ transplants, which is…(drum roll…) organ donation. And here the scariest statistic of all: practically every American adult (98%) has heard of organ donation, however, only 30% take the trouble of becoming donors. All you healthy people out there, this is your chance for greatness. The gift of an organ is a purely altruistic and trusting act. It comes from a place of generosity and caring for your fellow human. Whether you are a living donor, or a deceased one, the decision to donate organs is by far the kindest and humblest accomplishment in your life. 

THE HOSPITAL ZAGAT

“Where should we go for dinner?” I asked my husband a few days ago. He casually picked up the Zagat, which seems to always be close by. He began flipping through the pages. This small book full of culinary treasures is our guideline to pleasing our palette. This time however, his mind and mine drifted away from our taste buds. Suddenly, we had a “Siamese” moment as I call it. I knew what he was thinking because I was thinking the same thing. Lately, I had been complaining of “bloggers block.” I couldn’t figure out what I wanted to write about. In that meeting of minds it became clear to my husband and me. “Honey,” he said, “you’ve spent more time in hospitals than restaurants.” That’s all he needed to say. What if there was a hospital Zagat? And an idea was born.

UCLA Medical Center a “delight” for the patient and their spouse who want to spend "quality time" together in the emergency room. Bring a game of Monopoly or Trivial Pursuit, or a book like War and Peace as you “savor” the five-hour wait to be seen. Allow yourself to get into a “contemplative” mood while staring at the “mesmerizing” off-white walls, and listening to the “soft” moans of those around you. Sadly, UCLA Medical Center lost a few points  when the drunken homeless guy sat down next to me. Instead of 29 I give it 25 for emergency room services and 28 for patient care (once we got to that point).

THE BEAUTY OF REPLACEMENT PARTS

REPLACEMENT PARTS

Recently I heard that a replaced knee only lasts fifteen years. I am in my tenth year with one of my knee replacements (the other is in it's eight year) and can't imagine that it will fail me at some point. I spin three times a week. I've been doing this since before receiving the new parts and have only intensified m y workouts after getting the new parts. Yes, I said parts since I have two knee replacement and two hip replacements. With all my fairly "new" parts, I have taken up road biking as well.

The beauty of having these metal instead of hips and knees, is that osteoarthritis has become an afterthought. I'd like to say that it has completely disappeared but unfortunately I can't. Why? Because, just like a used car, when you fix one thing, another goes haywire. My hips and knees might be fixed, but my ankles, elbows and wrists...well no comment.

Still, I’m thankful to live at a time when replacing bad parts with new ones is feasible. Forget about the hips and knees, I'm on my 4th liver. Yes, I have replaced that too...3 times. End of October it will be two years since the new replacement part (the newest liver and kidney...my first). Ugh! I'm exhausted just thinking about it.

If anyone has been wondering what life is like after replacement parts, well from personal experience I can say pretty damn good.