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Twin organ recipients breathe life into Japanese transplant advocacy

21 Comments
By Jessica Ocheltree

Take a deep breath. Can you feel your lungs expanding inside your chest as the delicate sacks called alveoli pluck oxygen from the air to power the cells in your body? Now breathe out, and let your lungs effortlessly switch from gathering O2 to expelling CO2, a gas that would otherwise build up and send you convulsing to your death. Have you ever stopped to think about what a miracle working lungs are?

Anabel Stenzel and Isabel Stenzel Byrnes have. They struggled for decades to get their lungs, crippled by cystic fibrosis, to do the very thing we all take for granted. Now in their 30s and with donor lungs helping them breathe easily, they’ve come to Japan to try and break down some of the cultural barriers against organ transplantation.

Ana and Isa, as they are known, are something of an anomaly. They were born to a Japanese mother and German father. Cystic fibrosis is a genetic disease which only presents when both parents are carriers. Given the disease’s extreme rarity among Asians and the unlikelihood of identical twins, their physicist father calculated that there was a 1 in 1.8 billion chance of having half-Japanese twins with CF.

The sisters spent much of their young lives undernourished, enduring long hospital stays on IV antibiotics to fight killer bacteria. Although they weren’t expected to live through adolescence, they went on to attend prestigious Stanford University. But every day they had to strike a balance between optimism and realism.

“How were we going to live the best life that we could with this weight on our shoulders that maybe we wouldn’t see our high school graduation or maybe we wouldn’t go to college and maybe we wouldn’t even get married?” asks Isa.

CF was slowly killing them. Ana and Isa both suffered drops in their lung capacity in their 20s. They didn’t have the energy to enjoy their lives and became highly dependent on supplementary oxygen. It was becoming clear that they needed to consider the option of donor lungs.

Transplantation is not a cure-all — one doctor has likened it to exchanging one disease for another. Recipients must spend the rest of their lives on a cocktail of immunosuppressant drugs, which puts them at risk of infection and a long list of side effects. In the end, both Ana and Isa decided to take the risk, receiving new lungs in 2000 and 2004, respectively. With those precious gifts, they had a new capacity for life.

“I filled my days with bountiful energy to live hard — to see and do as much as I could to make up for lost time,” says Ana.

The sisters have indeed been living hard. In addition to fulfilling personal goals like climbing the intimidating Half Dome in Yosemite Park, they give lectures, lead workshops and participate in awareness-raising events, including the U.S. Transplant Games. After co-authoring the memoir "The Power of Two: A Twin Triumph Over Cystic Fibrosis," the sisters teamed up with Academy Award-nominated producer Marc Smolowitz ("Weather Underground") to make a documentary about the importance of organ donation and CF research, which is tentatively scheduled for release in 2011.

Their trip to Japan last month involved work on the film and promotion for the Japanese version of their book. It was also serendipitously timed, as Japan has recently changed its famously restrictive donation laws, allowing people under 15 to be donors and relaxing the rules for establishing consent.

While celebrating the decision, Ana wonders if it will do much to increase the donor pool, as it provides little funding for education or outreach. “It’s a huge step forward. The only problem is now, children are in the same situation as adults in Japan, which means they might wait ten years for a kidney or 20 years for a liver or never get a heart because people don’t want to donate the heart. They’re still in the same dire straits as the adults.”

Still, the twins hope that their efforts and those of locally based advocates can eradicate misconceptions.

“Organ donation is not about taking something from families — it’s about giving them an opportunity to help other people in their tragedy,” says Isa. “We aren’t saying that our lives as recipients are more important than the donor’s lives. That life of the donor is so valuable, but it’s already been let go. Organ donation is the one last act that a person can perform after they have died to help other people.”

To find out more about "The Power of Two," see www.thepoweroftwomovie.com. Also see the Japan Organ Transplant network (www.jotnw.or.jp; English and Japanese) or the Japan Transplant Recipients Organization (www.jtr.ne.jp; Japanese).

This story originally appeared in Metropolis magazine (www.metropolis.co.jp).

© Japan Today

©2024 GPlusMedia Inc.


21 Comments
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Hopefully Japanese attitudes will change. It kind of makes me sick when Japanese people say it's against their culture to give an organ, yet would happily accept one should their life depend on it.

Personally, I think their should be some sort of registry in each country and only people signed up to donate are eligible to receive. Then perhaps, registries could be linked internationally. None of this, "Giving organs is terrible and un-Japanese. BTW, let's raise money for my sick son so we can get a new kidney in America/China/India/etc."

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zentraedi,

spot on comments! Unfortunately most japanese have a narrow view on this topic, they simply dont cant comprehend the gift of life wrt donating organs, wud be nice if more japanese good see the light on this one then they wudnt have to go overseas

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Hopefully Japanese attitudes will change. It kind of makes me sick when Japanese people say it's against their culture to give an organ, yet would happily accept one should their life depend on it.

To be fair, many of the advocates of donation in Japan, as elsewhere, are people who have either lost a loved one, or seen a loved one suffer and be helped by transplant. Many of these have campaigned for years to try and bring change here. There are also taboos against live donation, people seem to have a much more deeply ingrained selfishness here. When my Peruvian brother in law had his interview here with the Japanese social worker about his motive for donating his kidney to my husband, she asked him "Why do you want to donate?" and Ricardo laughed at the absurdity of the question, and said "because I love my brother!" and the social worker kind of got lost for words, like she'd never had to contend with such an answer before.

But I totally agree as far as cadaveric donation goes, people really don't care where the kidney comes from, thinking that money buys the right to it, and they don't want to consider any ethical questions (like the donor is poverty stricken and has sold it, as in many poor countries, or has been forced to sign a "donation" form prior execution, as in China, or simply that they are feeding into a system where there is more reciprocity and there are waiting lists, and more consciousness that it's a two way thing, as in the UK, or US or Spain). I think the it's our culture thing is just a convenient way to avoid thinking issues through. Most don't seem to have issues accepting a "foreign" kidney into their Japanese are different body.

Anyway, credit to these two for coming here and trying to help change things.

I also hope there will be more comments posted on here, or is it that JT readers are more interested in gory stories?

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how about asking the question on drivers licenses, simple yes/no, make an answer mandatory when renewing, simple fact is a lot of organs from car accidents cud save a lot of lives, but I wud expect the vast majority wud pick no.........

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how about asking the question on drivers licenses, simple yes/no, make an answer mandatory when renewing, simple fact is a lot of organs from car accidents cud save a lot of lives, but I wud expect the vast majority wud pick no.........

apparently it depends on how the question is asked, from minute 5 http://www.youtube.com/watch?v=9X68dm92HVI

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**as_the_crow_flies at 10:04 AM JST - 26th November

Hopefully Japanese attitudes will change. It kind of makes me sick when Japanese people say it's against their culture to give an organ, yet would happily accept one should their life depend on it.

To be fair, many of the advocates of donation in Japan, as elsewhere, are people who have either lost a loved one, or seen a loved one suffer and be helped by transplant. Many of these have campaigned for years to try and bring change here. There are also taboos against live donation, people seem to have a much more deeply ingrained selfishness here. When my Peruvian brother in law had his interview here with the Japanese social worker about his motive for donating his kidney to my husband, she asked him "Why do you want to donate?" and Ricardo laughed at the absurdity of the question, and said "because I love my brother!" and the social worker kind of got lost for words, like she'd never had to contend with such an answer before.

But I totally agree as far as cadaveric donation goes, people really don't care where the kidney comes from, thinking that money buys the right to it, and they don't want to consider any ethical questions (like the donor is poverty stricken and has sold it, as in many poor countries, or has been forced to sign a "donation" form prior execution, as in China, or simply that they are feeding into a system where there is more reciprocity and there are waiting lists, and more consciousness that it's a two way thing, as in the UK, or US or Spain). I think the it's our culture thing is just a convenient way to avoid thinking issues through. Most don't seem to have issues accepting a "foreign" kidney into their Japanese are different body.

Anyway, credit to these two for coming here and trying to help change things.

I also hope there will be more comments posted on here, or is it that JT readers are more interested in gory stories?**

You took my words out of my mouth, thank you.

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The United States performs more organ transplants than any other country. It also has more people on the waitlist to receive organs, over 80,000 currently. Japan was likewise a pioneer in transplantation surgery. However, between 1969 and 1999, Japan shut down heart transplantation and refused to allow cadaveric organ donation. It continued to allow and perform living donor transplants of kidneys, and developed and perfected techniques for living donor transplantation of a portion of the liver. Why the difference? Japan did not legally acknowledge brain death as death until 1997, and then it is only acknowledged for patients who are over 15 years of age, and have previously declared formally that they wish to be organ donors. Those who do not meet these criteria are treated as alive even after a declaration of brain death, and are kept on respirators until heart failure occurs.

One difference is in the Japanese beliefs about the nature of the self. For a traditional Japanese person, the self or soul is diffused throughout the body. In the western, post-Cartesian view, the self is associated only with the brain. It is the brain that makes a person who he is in United States' culture, and therefore when the brain is dead, the individual is dead.

Another difference in attitude between the United States and Japan is in the difference between how the two peoples view gift-giving. The Christian tradition is one of altruism, loving and giving gifts to strangers. In the Japanese tradition gift-giving is reciprocal. The idea of giving someone a body part when that person is neither a friend nor a relative is very strange to the Japanese mind.

The most important differences that relate to this difference in practice between the U.S. and Japan is the difference in attitudes towards western medicine. Japanese have a great distrust of western medical doctors. There are constant reports in the Japanese media about medical schools that sell diplomas or doctors who have bought their way into medical school or cheated on the exams. Doctors in Japan make the majority of their money off of prescriptions, rather than examination, diagnosis, and nonpharmaceutical treatment. In contrast, the average person in the United States has a very great respect for the medical profession. In studies of patients in clinical trials, for example, the vast majority of patients believe that the experimental medication must be of benefit to them personally or the doctor would not have prescribed it. Despite careful explanations that the patient needs to inform himself or herself about the experiment to be sure s/he wants to participate, patients have such trust in doctors working for their welfare in the United States that they feel no need to read the literature.

Moreover, although it has long been the case that the majority of Americans die in the hospital, this is only just recently true in Japan. As a result, Japanese tend to think of death in the context of family and society, while for Americans it is more and more removed from family and society. To accept brain death as death is to accept that hospitalization is required for a diagnosis of death.

Finally, and probably most importantly, the first heart transplant in Japan was performed under such suspicious circumstances that the Japanese people developed a strong fear of the procedures and doctors who wished to perform it. The first transplant, in 1969, was performed by a doctor from western Japan -- considered a somewhat outlaw region -- who had been trained in western medicine outside of Japan. The donor in this case had been injured in a drowning and seemed to have been recovering, but then was brought to the hospital where the transplant was to take place beforebeing declared braindead. The doctor who declared the donor braindead was the same doctor who performed the transplant. This is no longer allowed, even in the United States, for conflict of interest reasons. There was some question as to whether the recipient really needed a heart transplant. The doctor and transplant team were accused of murder, because the recipient did not live for very long after the transplant.

Upon investigation it was found that the doctor had replaced two valves on the defective heart with defective valves from another heart to make sure that the heart looked as though it had needed replacement. In fact, only one valve of the heart needed replacement or repair. The doctor had performed an unnecessary heart transplant using a donor heart from someone he himself had declared braindead. The people of Japan were obviously frightened by this murderous hoax being perpetuated by a team of surgeons for their own greater glory.

Even though brain death was legally declared death in Japan in 1997, the second Japanese heart transplant was not performed until two years later, in 1999. Even now, most Japanese people do not want to donate organs. They fear that they will be declared braindead when they are not in order to obtain useable organs.

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miyaratmosphere,

if you cut & pasted that you shud say so

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Another difference in attitude between the United States and Japan is in the difference between how the two peoples view gift-giving. The Christian tradition is one of altruism, loving and giving gifts to strangers. In the Japanese tradition gift-giving is reciprocal.

That is a good point, miyaratmosphere. I've never thought of it that way. Japanese rarely - if ever - give gifts without (non-explicitly) demanding something in return. I guess the concept of organ donation here will take many, many years to catch on. The crazy thing is, Japanese seem to support it when they - or a family member - desperately need a transplant. China does a roaring trade in selling organs to Japanese patients.

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They don't look like Germans...i thought their father was a german

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GW at 08:45 PM JST - 26th November

miyaratmosphere,

if you cut & pasted that you shud say so

Why asking what you already know? Giving pieces of information isn't a crime, isn't it?

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BurakuminDes,

and You haven't seen anything yet, hon..I spend a couple of hours on the net last night doing some personal research and what I found makes your skin crawl...Ughh...let me see if I can find something more.

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BurakuminDes, Read this:

Japan's rich buy organs from executed Chinese prisoners

Hundreds of well-off Japanese and other nationals are turning to China's burgeoning human organ transplant industry, paying tens of thousands of pounds for livers and kidneys, which in some cases have been harvested from executed prisoners and sold to hospitals.

When Kenichiro Hokamura's kidneys failed, he faced a choice: wait for a transplant or go online to check out rumours of organs for sale. As a native of Japan, where just 40 human organs for transplant have been donated since 1997, the businessman, 62, says it was no contest. "There are 100 people waiting in this prefecture alone. I would have died before getting a donor." Still, he was astonished by just how easy it was.

Ten days after contacting a Japanese broker in China two months ago, he was lying on an operating table in a Shanghai hospital receiving a new kidney. "It was so fast, I was scared," he says. The "e-donor" was an executed man; the price: 6.8m yen (about £33,000).

Beijing does not reveal how many people it executes, but analysts estimate as many as 8,000 people are killed each year. Reports of Chinese authorities removing organs from executed prisoners have been circulating since the mid-1980s, when the development of a drug called Cyclosoporine-A made transplants a newly viable option for patients.

Until now, most of the evidence linking executions to the organ trade has been anecdotal and has not been helped by a lack of transparency in the Chinese criminal justice system or the secrecy that surrounds prison executions.

A recovering Mr Hokamura claims he is concerned with where his new kidney came from. "My translator said my donor was a young executed prisoner," says the businessman. "The donor was able to provide a contribution to society so what's wrong with that?"

"It was cheap," adds Mr Hokamura, now back in Japan. "I can always earn more money."

Rumours of problems with follow-up care and patients dying within one to two years of returning from China have failed to stem the tide.

A single broker has helped more than a hundred Japanese people go to China for transplants since 2004 and the trade is growing. Official figures almost surely underestimate the numbers of people, many of whom fly without government knowledge. Mr Hokamura says his family is so pleased that his daughter has put his experience on the internet. In her blog she says she feels sorry for others to have to wait years for transplants and provides a link to a support centre in Shanghai. "Other people should know about this," she writes.

Sources say the cost of a kidney transplant runs to £37,000 and for a liver up to £88,000. Mr Hokamura paid another million yen for transport costs. There is little attempt to conceal the origins of the organs, the bulk of which are taken from executed prisoners.

Alarmed by the growing traffic, the Japanese health ministry has begun a joint research project with transport authorities in a bid to gain some control on the trade. But the government is likely to find it difficult to stop desperate people who have money from making the short plane hop to China. Says Mr Hokamura: "I was on dialysis for four years and four months. I was tired of waiting."

The Chinese government insists it is trying to crack down on the market in illegal organs. According to regulations, even in the case of a donation by a close living relative, both patients and donors must provide legal proof of the relationship by blood or marriage or submit to a DNA test.

But the signs spray-painted on the walls outside clinics and hospitals in many parts of China tell a different story. Simple and direct, these show a mobile phone number and the character for shen, which means "kidney", written alongside. Postings on numerous online bulletin boards and other internet sites also offer kidneys for sale.

The sale of organs for transplants is illegal in China, but the black market is flourishing. And it's not just the small private hospitals and clinics springing up all over the country - even bigger hospitals in the capital Beijing and the business hub of Shanghai have adverts in toilet cubicles and on the walls of wards.

"We have to wipe off the notices again and again. They even visit doctors, make numerous calls or write letters again and again," said Professor Ding Qiang, the head of Urology at Huashan hospital, part of Fudan university in Shanghai. "Donations that are subsequently made are surely organ trading, but 'organ donation' for money is strictly banned," said Professor Ding.

However, China is a huge country and, as the proverb goes: the mountains are high and the emperor is far away. The legal ban may have an impact on the illegal organ trade in major public hospitals but the private clinics and small hospitals, which are run for profit, are extremely difficult to regulate, leaving room for profitable, illegal organ trading.

Generally, there is a lack of awareness in China about transplants. As in Japan, a cultural taboo, strongly related to Buddhist beliefs, has traditionally been associated with donating organs. The procedure is seen to make the body imperfect and, in some ways, it means the donor is being unfilial, even if the donation is to a family member.

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As in Japan, a cultural taboo, strongly related to Buddhist beliefs, has traditionally been associated with donating organs. The procedure is seen to make the body imperfect and, in some ways, it means the donor is being unfilial, even if the donation is to a family member

Thanks for the interesting post, Miyaratmosphere. It's sad to think that many of these desperate people could have avoided going to china to purchase an organ - which will probably fail - if there was more understanding and acceptance of organ transplants, and less belief in a nonsense religion.

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miya

I didny know I suspected, guessed, you shud use the quote function so people dont confuse/attribute what you copy/paste as yr own words

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Thanks for all the information Miya. I checked it out too and found similar facts. It seems that there is still cultural resistance to becoming an organ donor because of the belief that the body and soul and connected. As with many things in Japanese society, it seems as if there are these unwritten rules, laws and moral code that people follow. What bothers me about this is that people are not making an educated, individual choice but rather basing their decision on what other people are doing or simply in fear. More awareness is still needed. Hopefully, more success stories like this one will be heard and people will start to realize the benefits of organ donation. About 12,000 people are awaiting transplants right now in Japan.

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GW, I'm trying to use the quote button for ages..ughh...but somehow it just doesnt work on my piece of crap "brand new" NEC laptop. wtf, right?

Dolphingirl, You're most welcome, girl :)

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While organ donation/transplant could stand to be more 'popularized' in Japan, in countries where they ARE popular there remain serious issues about who benifits from a very limited resource. There are never enough organs to meed the need.

Therefore, the REAL push has to be in two other directions ... synthetic organs and xenotransplantation (using animal organs while suppressing immune rejection of the mismatched tissue).

Advances ARE being made with synthetic organs, some simple ones (bladders, livers) might be availible soon, followed later by hearts and maybe kidneys (a structurally complex organ).

Xenotransplants potentially offer a "right NOW" fix (for people/cultures that aren't squeamish about such things) except for the immune rejection issue. Find ways to fool the body into gracefully accepting 'alien' tissue and there would suddenly be an unlimited supply of 'spare parts'.

And yes, there are subsidiary approaches such as using stem cells to repair bad organs, even artificial organs (mechanical/semi-mechanical) to some extent, but nothing beats genuine natural protoplasm-based organs for long-term performance and stem cells can't deal with a crisis situation where there's just no time for a slow re-build.

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Found out that even if the Donor states it clearly that they want to donate, family can overrule the departed. Selfish.

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As for iyaratmosphere comments about Buddhist beliefs, Japanese are no religious at all. They say they are Buddhist, however when asked even the popular teachings of Buddha, nothing can be states. It like being Christian or Jewish and not knowing even 1 commandment. What a joke of a comment. Japanese are simply too concerned with themselves. ie my comment: They are just selfish.

That said, so many fly to the US to take American Donor Organs, a practice I do not support. Americans are waiting in line. Protect Americans first.

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As for iyaratmosphere comments about Buddhist beliefs, Japanese are not religious at all. They say they are Buddhist, however when asked even a few popular teachings of Buddha, nothing can be repeated. It is like being Christian or Jewish and not knowing even 1 commandment. What a joke of a comment. Japanese are simply too concerned with themselves. ie my comment: They are just selfish.

That said, so many fly to the US to take American Donor Organs, a practice I do not support. Americans are waiting in line. Protect Americans first.

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