Donors, Many Risks to Weigh
By JANE E. BRODY
Published: September 4, 2007
Linda Fox of Brooklyn donated a lobe of her liver to save her husband, whose own liver had failed. The transplant took, and Ms. Fox said although recovery from the surgery was no picnic, she would willingly do it again.
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Stuart Bradford
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Personal Health: The Solvable Problem of Organ Shortages (August 28, 2007)
Will Maloney, also of Brooklyn, donated a kidney to his brother, who was struggling to survive with the aid of dialysis. The operation was anything but simple, and Mr. Maloney suffered significant complications. Worse yet, the transplanted organ quickly failed, and his brother was again in need of a donated kidney, which he eventually received from a deceased donor.
In 2004 and 2005, the number of organ donations from living donors surpassed those from dead donors. And although dead donors are once again more common, many people risk surgery and the loss of an organ to save the lives of people they love — and increasingly of strangers, as well.
In addition to a kidney and lobe of a liver, living donors can give the lobe of a lung and bone marrow. Almost half of all kidney donors in the United States are living donors, a total of 6,434 last year. Living donors last year also provided lobes of the liver to 288 recipients and lobes of a lung to five recipients. Transplants between unrelated donors are now highly successful, thanks to improved methods of immune suppression that reduce the need for close tissue matching to prevent rejection.
But many problems can complicate transplants from live donors. It is important that potential donors know about them and take the time to resolve them before deciding whether to go ahead with a donation, which carries the potential for serious physical and emotional risks.
Ethical Concerns
Dr. Robert D. Truog, professor of medical ethics and anesthesia at the Harvard Medical School, lists three categories of living organ donation: directed donation, to a loved one or friend; nondirected donation, in which the organ goes to the general pool to be transplanted into the recipient at the top of the waiting list; and directed donation to a stranger, in which a donor gives to a specific person with whom there is no emotional connection.
And, Dr. Truog added in an essay in The New England Journal of Medicine in August 2005, “Each type of donation prompts distinct ethical concerns.”
When, as with Ms. Fox and Mr. Maloney, the donated organ is destined for a loved one or friend, there is the possibility of coercion — intense pressure on the potential donor to risk the surgery, as well as the chance that the transplant will not succeed. For those who do not want to go forward with a living organ donation and say so to the doctors involved, transplant teams are typically willing to provide a reasonable medical excuse to enable the person to bow out gracefully.
But, Dr. Truog noted, there are “situations in which people feel compelled to donate regardless of the consequences to themselves.” He told of a case in which a child was dying of respiratory failure. Both parents “insisted on donating lobes of their lungs in a desperate but unsuccessful attempt to save her life.”
He maintains that in such cases it is not enough to obtain informed consent from the potential donor. Rather, he said, “physicians are obligated to prevent people from making potentially life-threatening sacrifices, unless the chance of success is proportionately large.”
In nondirected donations to the general transplant pool, it is important to explore what has motivated the person to make such a sacrifice for an anonymous recipient.
The possibilities include personality or emotional disturbances like depression, low self-esteem, an abnormal desire for attention or a desire to become involved in the recipient’s life. Or the person may simply want to repay a kindness to society, perhaps because a loved one’s life was saved by an organ from a deceased donor.
But when the motive is suspect, transplant teams are supposed to assess the reasons and prohibit donations that raise serious concerns.
Helping Strangers
Recently, there has been an increase in organ donations directed to strangers who may advertise their need for transplants through the news media, the Internet and even on billboards. Although there is nothing illegal about soliciting a donor organ, the practice is inherently unfair and raises the possibility of buying and selling organs, which the medical community considers highly unethical. Donated organs are considered a “gift of life,” not a commodity to be bought and sold.
There is a national list of people awaiting transplants, and those who are the sickest, though rarely the wealthiest, are at the top. But when donations are directed to strangers, potential recipients “who have the most compelling stories and the means to advertise their plight tend to be the ones who get the organs, rather than those most in need,” Dr. Truog said.
There are other possible wrinkles in donations directed to strangers. The donor may insist that the donation not go to a recipient of a particular race, religion or ethnic group. One case, in which a white brain-dead donor specified that his organs go just to white recipients, prompted Florida to pass a law prohibiting patients and families from restricting donations in this way.
Another case was less clear-cut. A Jewish man in New York learned of a Jewish child in Los Angeles who needed a kidney and said he would donate a kidney to help this child. This is clearly a discriminatory donation, even though it would enable those below the child on the transplant list to move up a notch. On the other hand, if the donation was not allowed, no one would benefit, because the man would not offer his kidney to anyone else.
Live Donor Swaps
Pressure is mounting to establish a national registry of live donors, people who were willing to donate organs to relatives or friends but were not good matches.
Through such a registry, patients anywhere in the country could “swap” one of their donors who is not a match for a donor who is. Such programs have the potential to increase significantly the donor pool and the success of transplants, because the surgery can be done before the patient is deathly ill. In recent years, small donor exchange programs have been established by the Johns Hopkins Medical Center, the New England Organ Bank and the Ohio Paired Donation Consortium.
Promoting Organ Donations the Gift of Life
Wednesday, September 5, 2007
Tuesday, September 4, 2007
Organ Donations
Although willingness to donate organs has risen in recent years,: By JANE E. BRODYNY NY TIMES NEWS SERVICE, NEW YORK Tuesday, Sep 04, 2007, Page 16
When the wife and younger daughter of Rear Admiral Kenneth Moritsugu of the US Navy were fatally injured in separate automobile accidents, he authorized the donation of organs and tissues from both of them.
Moritsugu, acting surgeon general of the US, calls organ donation "the ultimate act of human kindness." But the number of donor organs falls far short of the need. As of June, 97,000 people awaited lifesaving transplants in the US, and each day the waiting list grows five times faster than the donation rate.
People typically wait three to five years for donated organs, and each day 17 of them die.
But, as Moritsugu noted recently in The Journal of the American Dietetic Association, "The shortage of donor organs is a medical problem for which there is a cure."
When the decision is made to donate, he said, those families, "often in a time of grief and tragedy, rise above personal concern to help others in need of lifesaving transplantation."
The parents of Laurie McLendon, 42, chose to donate when their daughter suffered cardiac arrest at New York-Presbyterian Hospital. Two women received her kidneys, a burn unit received skin, her corneas went to an eye bank, and her liver was transplanted into a 61-year-old pediatric oncologist, Michael Harris of Englewood, New Jersey, who had contracted hepatitis C years earlier while caring for a patient.
Other organs and tissues that can be donated are the heart, pancreas, lungs, intestines, bone marrow, heart valves and connective tissue. A kidney, part of a liver, lobe of a lung and bone marrow can be obtained from living donors. But three out of four transplanted organs come from people who die and had indicated their willingness to be donors by signing an advance directive or by telling the person designated to speak for them when they can no longer speak for themselves.
Although willingness to donate has risen in recent years, major hurdles remain. Some people, for example, believe incorrectly that patients who might otherwise be saved are sometimes "killed" for their organs. Strict regulations are in place to prevent this.
In the early days of transplantation, donated organs and tissues came from victims of cardiac death, people who were no longer breathing and had no pulse, and whose hearts could not be revived. Often by the time organs could be removed after a cardiac death, they had been without a blood supply for too long and were unusable or unlikely to survive in the recipients.
In 1968, death was redefined as occurring when the brain ceased to function, although the heart may continue to beat with the support of drugs, and breathing is sustained by a ventilator. With a brain-based definition of death, organs are often in much better condition for transplants.
But just 1 percent to 2 percent of patients who die in hospitals are declared brain dead. And because continuous circulation is needed to keep organs healthy, deaths that occur outside a hospital are almost never a source of usable organs. Thus, donation after an unexpected fatal cardiac arrest is rare.
There are several ways to increase the supply of organs. They include persuading more people to agree to be donors when they die, putting hospital policies and procedures in place to foster organ donation, obtaining more organs donated from the victims of brain death and cardiac death and increasing the number of live donors, especially people unrelated to the recipients.
The success of any transplant program depends on the number of individuals who indicate in advance of their death their willingness to be donors. While most Americans say they approve of donation, only about one person in four has indicated that by signing forms. In Europe, where you are considered a potential donor unless you expressly declare that you do not want to be one, more than 90 percent of people are organ donors.
Age is no longer a limit to donation. So consider indicating willingness to be a donor on your driver's license or in your living will. Even more helpful is to tell your next of kin or health care agent that you want to be a donor. And carry a signed organ donor card in your wallet.
Through the efforts of the national Organ Procurement Transplantation Network and its regional chapters, more hospitals today have a system in place that fosters donation. When patients who may be suitable donors are dying, families are more often asked to consider donations.
But more hospitals need to expand their use of brain-dead donors who are less than perfect, including people older than 60 and those with high blood pressure. Studies have shown that their organs can be successfully transplanted.
Another approach is to retrieve more organs from individuals who suffer cardiac deaths, that is irreversible loss of heart and respiratory function rather than irreversible loss of all brain functions, the criterion for brain death. Although organs retrieved from victims of cardiac death account for just 8 percent of donations from dead donors, they are the most rapidly increasing source of donations.
According to Robert Steinbrook, a consultant for The New England Journal of Medicine, the potential for a much higher percentage of donations from victims of cardiac death has been demonstrated at organ banks in Wisconsin, the Boston metropolitan region and the Finger Lakes region of New York, places where cardiac death donors account for more than 20 percent of all deceased donors.
Steinbrook said potential donors included patients on ventilators after devastating and irreversible brain injuries, as might follow a hemorrhagic stroke, as well as patients with high spinal cord injuries and terminal musculoskeletal diseases like ALS, for whom further medical treatment is deemed futile.
These patients are technically not dead. But if they are considered suitable donors and the families agree to donation, life-support measures are ended. When the patient's heart stops, doctors wait five minutes before declaring the patient dead and removing viable organs for transplant.
If the heart does not stop within a reasonable time, planned donations have to be canceled, which occurs in about one in five cardiac deaths.
To be transplanted successfully, the liver has to be retrieved within 30 minutes and the kidneys and pancreas within an hour after a patient is removed from life support. When this protocol is followed, Steinbrook said, the success of a transplant after cardiac death is similar to that of a transplant after brain death. This story has been viewed 154 times.
When the wife and younger daughter of Rear Admiral Kenneth Moritsugu of the US Navy were fatally injured in separate automobile accidents, he authorized the donation of organs and tissues from both of them.
Moritsugu, acting surgeon general of the US, calls organ donation "the ultimate act of human kindness." But the number of donor organs falls far short of the need. As of June, 97,000 people awaited lifesaving transplants in the US, and each day the waiting list grows five times faster than the donation rate.
People typically wait three to five years for donated organs, and each day 17 of them die.
But, as Moritsugu noted recently in The Journal of the American Dietetic Association, "The shortage of donor organs is a medical problem for which there is a cure."
When the decision is made to donate, he said, those families, "often in a time of grief and tragedy, rise above personal concern to help others in need of lifesaving transplantation."
The parents of Laurie McLendon, 42, chose to donate when their daughter suffered cardiac arrest at New York-Presbyterian Hospital. Two women received her kidneys, a burn unit received skin, her corneas went to an eye bank, and her liver was transplanted into a 61-year-old pediatric oncologist, Michael Harris of Englewood, New Jersey, who had contracted hepatitis C years earlier while caring for a patient.
Other organs and tissues that can be donated are the heart, pancreas, lungs, intestines, bone marrow, heart valves and connective tissue. A kidney, part of a liver, lobe of a lung and bone marrow can be obtained from living donors. But three out of four transplanted organs come from people who die and had indicated their willingness to be donors by signing an advance directive or by telling the person designated to speak for them when they can no longer speak for themselves.
Although willingness to donate has risen in recent years, major hurdles remain. Some people, for example, believe incorrectly that patients who might otherwise be saved are sometimes "killed" for their organs. Strict regulations are in place to prevent this.
In the early days of transplantation, donated organs and tissues came from victims of cardiac death, people who were no longer breathing and had no pulse, and whose hearts could not be revived. Often by the time organs could be removed after a cardiac death, they had been without a blood supply for too long and were unusable or unlikely to survive in the recipients.
In 1968, death was redefined as occurring when the brain ceased to function, although the heart may continue to beat with the support of drugs, and breathing is sustained by a ventilator. With a brain-based definition of death, organs are often in much better condition for transplants.
But just 1 percent to 2 percent of patients who die in hospitals are declared brain dead. And because continuous circulation is needed to keep organs healthy, deaths that occur outside a hospital are almost never a source of usable organs. Thus, donation after an unexpected fatal cardiac arrest is rare.
There are several ways to increase the supply of organs. They include persuading more people to agree to be donors when they die, putting hospital policies and procedures in place to foster organ donation, obtaining more organs donated from the victims of brain death and cardiac death and increasing the number of live donors, especially people unrelated to the recipients.
The success of any transplant program depends on the number of individuals who indicate in advance of their death their willingness to be donors. While most Americans say they approve of donation, only about one person in four has indicated that by signing forms. In Europe, where you are considered a potential donor unless you expressly declare that you do not want to be one, more than 90 percent of people are organ donors.
Age is no longer a limit to donation. So consider indicating willingness to be a donor on your driver's license or in your living will. Even more helpful is to tell your next of kin or health care agent that you want to be a donor. And carry a signed organ donor card in your wallet.
Through the efforts of the national Organ Procurement Transplantation Network and its regional chapters, more hospitals today have a system in place that fosters donation. When patients who may be suitable donors are dying, families are more often asked to consider donations.
But more hospitals need to expand their use of brain-dead donors who are less than perfect, including people older than 60 and those with high blood pressure. Studies have shown that their organs can be successfully transplanted.
Another approach is to retrieve more organs from individuals who suffer cardiac deaths, that is irreversible loss of heart and respiratory function rather than irreversible loss of all brain functions, the criterion for brain death. Although organs retrieved from victims of cardiac death account for just 8 percent of donations from dead donors, they are the most rapidly increasing source of donations.
According to Robert Steinbrook, a consultant for The New England Journal of Medicine, the potential for a much higher percentage of donations from victims of cardiac death has been demonstrated at organ banks in Wisconsin, the Boston metropolitan region and the Finger Lakes region of New York, places where cardiac death donors account for more than 20 percent of all deceased donors.
Steinbrook said potential donors included patients on ventilators after devastating and irreversible brain injuries, as might follow a hemorrhagic stroke, as well as patients with high spinal cord injuries and terminal musculoskeletal diseases like ALS, for whom further medical treatment is deemed futile.
These patients are technically not dead. But if they are considered suitable donors and the families agree to donation, life-support measures are ended. When the patient's heart stops, doctors wait five minutes before declaring the patient dead and removing viable organs for transplant.
If the heart does not stop within a reasonable time, planned donations have to be canceled, which occurs in about one in five cardiac deaths.
To be transplanted successfully, the liver has to be retrieved within 30 minutes and the kidneys and pancreas within an hour after a patient is removed from life support. When this protocol is followed, Steinbrook said, the success of a transplant after cardiac death is similar to that of a transplant after brain death. This story has been viewed 154 times.
Granting needy children the gift of life
(04-09-2007)
by Nguyen Minh Huyen
Bone marrow transplant surgery at the National Paediatrics Hospital. The Gift of Life live music show will be held on September 18 to raise funds for organ transplants at the hospital. — VNA/VNS Photo Huu Oai
Ha Noi — For children awaiting organ transplants at the National Paediatrics Hospital every day they have to wait longer is a question of life or death.
It is not just a shortage of organs that is the problem, as it is in many countries, but a lack of funds is also delaying transplant procedures.
For this reason, hospital managers set up the Gift of Life Fund in 2005, and mobilised their staff to visit companies, organisations and businesses, to ask for donations to pay for transplant operations for poor children who needed the surgery. The fund raising campaign culminated in a charity music show in May that year, with more than VND1.2 billion (US$75,000) was raised.
The event will be repeated again this year, and as previously, ahead of the event, doctors and nurses at the hospital, as well as youth union members, are rushing around trying to raise as much money as they can.
To donate to the Gift of Life Fund, contact:
Trinh Ngoc Hai, Administrative Office HeadThe National Paediatrics Hospital18/879 La Thanh Road, Dong Da District, Ha NoiTel: 047755335/0903225892Fax: 047754448Account number: 934 01 011 at the Ba Dinh Treasury, Ha NoiOr please visit the hospital’s website for more information at http://www.benhviennhitu.org.vn/
The Gift of Life live music show, to be held at the Municipal Opera House on September 18 and broadcast live on the Viet Nam Multimedia Corporation (VTC1) channel, will consolidate their efforts.
Most of the children who will benefit from the Gift of Life Fund are being treated for liver or kidney failure or leukaemia. Deputy Director of the hospital Tran Phan Duong said the event was being held not only to raise funds for operations, but also to encourage society to empathise with these needy children, and do something to make their lives a little brighter.
"We at the hospital are responsible for treating patients only, but this is a humanitarian act, so we are doing all we can to raise society’s awareness, and change attitudes so that people will care for these sick and poor children," Duong said.
The Law on Human Tissue and Organ Donation, which makes it legal for individuals and non-governmental organisations to set up tissue and organ banks, should make more organs available. However, the law only came into effect last July and it is impossible to say yet whether it is having this effect or not. But regardless of the number of organs available, the lack of funds for transplant operations is still a pressing issue.
A kidney transplant operation costs about VND300 million ($18,700), for liver transplants the cost is double — VND600 million; a bone marrow transplant costs VND400 million ($25,000), and these figures do not include the cost of the medication and medical care needed before and after surgery.
Many patients who have been recommended for kidney transplant, have already had dialysis. Each dialysis session costs about VND350,000, and three sessions are required per week. So, with a monthly cost of about VND4 million ($250), it is easy for the families to use up all their savings, before they get to the transplant stage.
After the transplant, immune-suppressants must be taken everyday for the rest of the patient’s life to stop the body rejecting the new organ. The drugs cost VND3 to 5 million ($200 to 300) a month.
It is extremely difficult for families with average incomes to pay that kind of money, and for poor households it is almost impossible.
Until now the hospital has picked up the bill for transplant operations when it could not pass it on to the State funding or heath insurance system, but it cannot keep doing this forever, Duong said. "Any fund runs out of money if it is not constantly replenished," he aptly pointed out.
This is where the Gift of Life Fund comes in. So far, more than a dozen needy children have had their kidney, liver and marrow transplants paid for by the fund. "We had to distribute a little to each case otherwise it would have only been enough for just two cases," Duong said.
Still, Duong said, it does not matter how much people donate, as everyone gives as much as their circumstances will allow. But even the smallest gift shows that the giver cares for children, he said recalling a vegetable seller in central Nghe An Province who donated all the money she had made that day — a total of VND55,000 ($3).
Lives count down
Le Ngoc Hoang, 17, is from Nong Cong District in central Thanh Hoa Province. Hoang was rushed to hospital last October when he vomited blood. Doctors at the Paediatrics Hospital concluded that Hoang had cirrhosis, which caused swelling of the liver and spleen and portal hypertension. He had an emergency operation and since then Hoang has had to go to Ha Noi for check-ups every one or two months.
"We give him drugs to prevent the swelling and portal hypertension," said doctor Ho Thi Hien, deputy head of the Digestion Ward. "But that is only a palliative measure, in his case, it is just a matter of time before he needs a liver transplant."
Hoang’s parents, Le Ngoc Cung and Nguyen Thi Binh, are both farmers. Asked if they could pay VND600 million ($37,500) for Hoang’s future liver transplant, his mother Binh said in tears: "We don’t know what to do, where on earth can we farmers get that much money?"
Doctor Hien said that many of the cases she was treating now, would eventually need liver transplants. For instance, the Kasai operation to restore biliary flow is only a temporary treatment for patients with biliary atresia, a condition in new-born infants, in which the common bile duct between the liver and the small intestine is blocked or absent. "In this case, liver transplant is needed in the first years of the patient’s life," Hien said.
Treatment for liver failure caused by Wilson’s disease is also a transplant. The liver of a person who has Wilson’s disease does not release copper into the bile as it should, and the build-up of copper in the body damages the liver, kidneys, brain and eyes.
In cases of acute poisoning with mushrooms or drugs leading to liver failure, a transplant is also needed to save the person’s life.
Meanwhile, at the Clinical Haematology Ward, Nguyen Mai Duyen from the northern Thai Nguyen Province was taking her 8-year-old son Tran Quoc Huy to do a series of tests to prepare for a bone marrow transplant.
Huy was diagnosed with leukaemia and has been receiving chemotherapy since last November. However, the disease is not reacting to the treatment as quickly as it needs to and doctors have recommended a bone marrow transplant for Huy. His sister will be the donor.
"Health insurance does not cover the costs for organ donors [such as tests, and drugs to take before, during, and after the surgery], so the hospital has to take that money from its Gift of Life Fund," Tran Van Hoc from the Planning Office explained.
Doctor Professor Tran Dinh Long, head of the Nephrology Ward, said he had about 20 patients waiting for kidney transplants and two scheduled for transplants in the next week or two.
Because donors and recipients need at least 60 tests each, doctors often let the patients go home to prevent them catching infections at the hospital and to relax before the operation. "Come here next week you’ll meet plenty," Long said, hurrying to a patient’s room.
Deputy Director Duong said the hospital plans to turn the Gift of Life fund raising activity into a regular event, and hopes to raise as much ahead of the charity music show on September 18 as in 2005.
The show will be held one week before the mid-autumn Moon Festival. It is a Vietnamese tradition to present gifts to children on this occasion, and there is no better gift than the gift of life. — VNS
by Nguyen Minh Huyen
Bone marrow transplant surgery at the National Paediatrics Hospital. The Gift of Life live music show will be held on September 18 to raise funds for organ transplants at the hospital. — VNA/VNS Photo Huu Oai
Ha Noi — For children awaiting organ transplants at the National Paediatrics Hospital every day they have to wait longer is a question of life or death.
It is not just a shortage of organs that is the problem, as it is in many countries, but a lack of funds is also delaying transplant procedures.
For this reason, hospital managers set up the Gift of Life Fund in 2005, and mobilised their staff to visit companies, organisations and businesses, to ask for donations to pay for transplant operations for poor children who needed the surgery. The fund raising campaign culminated in a charity music show in May that year, with more than VND1.2 billion (US$75,000) was raised.
The event will be repeated again this year, and as previously, ahead of the event, doctors and nurses at the hospital, as well as youth union members, are rushing around trying to raise as much money as they can.
To donate to the Gift of Life Fund, contact:
Trinh Ngoc Hai, Administrative Office HeadThe National Paediatrics Hospital18/879 La Thanh Road, Dong Da District, Ha NoiTel: 047755335/0903225892Fax: 047754448Account number: 934 01 011 at the Ba Dinh Treasury, Ha NoiOr please visit the hospital’s website for more information at http://www.benhviennhitu.org.vn/
The Gift of Life live music show, to be held at the Municipal Opera House on September 18 and broadcast live on the Viet Nam Multimedia Corporation (VTC1) channel, will consolidate their efforts.
Most of the children who will benefit from the Gift of Life Fund are being treated for liver or kidney failure or leukaemia. Deputy Director of the hospital Tran Phan Duong said the event was being held not only to raise funds for operations, but also to encourage society to empathise with these needy children, and do something to make their lives a little brighter.
"We at the hospital are responsible for treating patients only, but this is a humanitarian act, so we are doing all we can to raise society’s awareness, and change attitudes so that people will care for these sick and poor children," Duong said.
The Law on Human Tissue and Organ Donation, which makes it legal for individuals and non-governmental organisations to set up tissue and organ banks, should make more organs available. However, the law only came into effect last July and it is impossible to say yet whether it is having this effect or not. But regardless of the number of organs available, the lack of funds for transplant operations is still a pressing issue.
A kidney transplant operation costs about VND300 million ($18,700), for liver transplants the cost is double — VND600 million; a bone marrow transplant costs VND400 million ($25,000), and these figures do not include the cost of the medication and medical care needed before and after surgery.
Many patients who have been recommended for kidney transplant, have already had dialysis. Each dialysis session costs about VND350,000, and three sessions are required per week. So, with a monthly cost of about VND4 million ($250), it is easy for the families to use up all their savings, before they get to the transplant stage.
After the transplant, immune-suppressants must be taken everyday for the rest of the patient’s life to stop the body rejecting the new organ. The drugs cost VND3 to 5 million ($200 to 300) a month.
It is extremely difficult for families with average incomes to pay that kind of money, and for poor households it is almost impossible.
Until now the hospital has picked up the bill for transplant operations when it could not pass it on to the State funding or heath insurance system, but it cannot keep doing this forever, Duong said. "Any fund runs out of money if it is not constantly replenished," he aptly pointed out.
This is where the Gift of Life Fund comes in. So far, more than a dozen needy children have had their kidney, liver and marrow transplants paid for by the fund. "We had to distribute a little to each case otherwise it would have only been enough for just two cases," Duong said.
Still, Duong said, it does not matter how much people donate, as everyone gives as much as their circumstances will allow. But even the smallest gift shows that the giver cares for children, he said recalling a vegetable seller in central Nghe An Province who donated all the money she had made that day — a total of VND55,000 ($3).
Lives count down
Le Ngoc Hoang, 17, is from Nong Cong District in central Thanh Hoa Province. Hoang was rushed to hospital last October when he vomited blood. Doctors at the Paediatrics Hospital concluded that Hoang had cirrhosis, which caused swelling of the liver and spleen and portal hypertension. He had an emergency operation and since then Hoang has had to go to Ha Noi for check-ups every one or two months.
"We give him drugs to prevent the swelling and portal hypertension," said doctor Ho Thi Hien, deputy head of the Digestion Ward. "But that is only a palliative measure, in his case, it is just a matter of time before he needs a liver transplant."
Hoang’s parents, Le Ngoc Cung and Nguyen Thi Binh, are both farmers. Asked if they could pay VND600 million ($37,500) for Hoang’s future liver transplant, his mother Binh said in tears: "We don’t know what to do, where on earth can we farmers get that much money?"
Doctor Hien said that many of the cases she was treating now, would eventually need liver transplants. For instance, the Kasai operation to restore biliary flow is only a temporary treatment for patients with biliary atresia, a condition in new-born infants, in which the common bile duct between the liver and the small intestine is blocked or absent. "In this case, liver transplant is needed in the first years of the patient’s life," Hien said.
Treatment for liver failure caused by Wilson’s disease is also a transplant. The liver of a person who has Wilson’s disease does not release copper into the bile as it should, and the build-up of copper in the body damages the liver, kidneys, brain and eyes.
In cases of acute poisoning with mushrooms or drugs leading to liver failure, a transplant is also needed to save the person’s life.
Meanwhile, at the Clinical Haematology Ward, Nguyen Mai Duyen from the northern Thai Nguyen Province was taking her 8-year-old son Tran Quoc Huy to do a series of tests to prepare for a bone marrow transplant.
Huy was diagnosed with leukaemia and has been receiving chemotherapy since last November. However, the disease is not reacting to the treatment as quickly as it needs to and doctors have recommended a bone marrow transplant for Huy. His sister will be the donor.
"Health insurance does not cover the costs for organ donors [such as tests, and drugs to take before, during, and after the surgery], so the hospital has to take that money from its Gift of Life Fund," Tran Van Hoc from the Planning Office explained.
Doctor Professor Tran Dinh Long, head of the Nephrology Ward, said he had about 20 patients waiting for kidney transplants and two scheduled for transplants in the next week or two.
Because donors and recipients need at least 60 tests each, doctors often let the patients go home to prevent them catching infections at the hospital and to relax before the operation. "Come here next week you’ll meet plenty," Long said, hurrying to a patient’s room.
Deputy Director Duong said the hospital plans to turn the Gift of Life fund raising activity into a regular event, and hopes to raise as much ahead of the charity music show on September 18 as in 2005.
The show will be held one week before the mid-autumn Moon Festival. It is a Vietnamese tradition to present gifts to children on this occasion, and there is no better gift than the gift of life. — VNS
Monday, September 3, 2007
Waiting for the greatest gift of all
Monday September 03 2007
At 28, life was good for Triona Sheehan. Living happily with her husband Harry in Greystones, Co Wicklow, Triona loved her job in IT. She had a son of seven whom she adored, and to crown her joy she was pregnant with her second child.
Then, while eight months pregnant, Triona developed complications. "I had protein in my urine, and oedema -- fluid -- in my legs too," she says. "I was taken into hospital, and, realising I had a kidney malfunction, they brought in a specialist from St Vincent's.
"I was getting progressively worse each day. They decided to take the baby out early to stop the regression, but it didn't work. The condition kept progressing, and when Holly was six weeks old, I was put onto dialysis."
Dialysis is a process that removes the waste products from the body by passing the patient's blood through a filtering machine that mimics the kidneys.
Triona performed peritoneal dialysis, at night, at home. Fluids were passed through her abdomen, in a tube, into the abdominal cavity to remove wastes from the blood, and she would connect it up each night.How did she cope? "It was a shock," she says. "But the first year was easier than the second. I could actually function normally. I was doing the dialysis at night -- my husband, Harry was the one getting up to do the night feeds -- and I was going into the clinic every eight weeks. I thought, "this isn't too bad for a critical illness.'
"Since then, though, I have been sick a few times. I've had peritonitis three times; that's like having a burst appendix.
"You get progressively worse on dialysis," she explains. "In the second year I became lethargic. I've got the onset of osteoporosis; I've got muscle atrophy, and my heart is under pressure. I've become anaemic too. I'm getting to the stage where I can't manage everyday life.
"It's hard coping with one income and I'm not used to being stuck at home. I can't get the children up every morning, and I can't clean the house. Luckily, I have a supportive family," she says. "Harry is amazing, and one of my sisters comes in and helps me." And the children -- who are now nine and two -- suffer as well.
"Karl started acting up a year ago when he realised I can't do what I could before. It's difficult for him. He knows exactly what is going on, and has heard my family talking about it. He understands. He turned round one day and said, 'mummy, you can have my kidney'."
"Holly understands, too. She comes and sits on my bed all day when I am sick. It's tough on them and everyone, but I have to make the most of the situation." Triona has been on the transplant list for two years now. "We're hanging on just hoping," she says."I am a stronger person than I was," she says. "And I'm less naïve. It has made us closer as a family. We know, now, that bad things can happen. We take life day by day."
Last year, 234 people in Ireland had an organ transplant, and it was all thanks to the generosity of 91 deceased donors and their families. That makes it a record year, but there are still 600 people waiting for a transplant.
Presumed consent
In England, they have been debating the laws around the issue of organ donation.
The Government Chief Medical Officer, Sir Liam Donaldson, suggested that everyone's organs should be available for transplant after death, unless they state otherwise -- in effect presumed consent.
Mark Murphy, CEO of the Irish Kidney Association, is not in favour of presumed consent. "In Ireland we have informed consent, and I strongly believe that is the best way," he says.
And it's not enough for people to carry a donor card. They have to tell their families because, in the case of death, it is the next of kin who gives permission for the organs to be donated.
"Most people are willing to donate and the family are not aware of it," he says.
"We don't talk about death within the family; it is not the Irish way. But if more people let others know how they feel, relatives won't be trying to second guess it when their loved one dies."
The problem, Murphy says, is the timing. "In that moment when someone is dead, but a machine is making their blood go round, it is hard to realise that they are dead. And that dreadful moment is the only time we have, to ask about donation.
"There are countries in the EU who have presumed consent, but they don't use the law. The next of kin is still allowed to say no.
"Spain has the law, and say it didn't make a difference in the refusal rate; but there, they ask a great deal more people if they are willing to donate.
"Every intensive care unit in Spain has a donor co-ordinator. They will stay with the families as long as they are needed."
Meanwhile, Mark is busy raising awareness. He is in Thailand with the 23-strong Irish team for the 16th World Transplant Games.
While there, his pitch to hold the 2010 European Transplant Games in Dublin was sucessful
At least 21 countries will take part in the games from all the way across Europe.
Over 450 athletes will come to Dublin and demonstrate how fit they are with new kidneys, livers and hearts.
Double transplant
However, only one of them has received a double transplant. Bridie Nicholson from Sligo received a new kidney and a new pancreas in 2000.
"I'd had diabetes since I was a child. I was insulin dependent," says Bridie, who is in her early 40s. "And as I grew up, I got complications.
"For the first six months I used a machine at home. I'd get back from work, go for my walk, and go on the machine for 10 hours. But then I got sick and had to go into the hospital system."
There Bridie had haemo-dialysis -- which involved running her blood through an artificial kidney machine. Then, late one Tuesday night, the call came. A kidney and pancreas were available at Beaumont Hospital.
"I was so excited, I thought I would never get to theatre quickly enough" says Bridie.
The operation went well, although afterwards Bridie had a setback. she developed a clot and ended up in intensive care.
"But I got over that, and every day I felt a bit better," she says, praising all the nurses and staff who looked after her so well.
Seven years on, Bridie is fighting fit.
"Walking out of hospital on a cold winter's evening knowing I had survived a double transplant -- and no longer had diabetes -- nothing replaces that feeling," she says.
"I am so grateful to the family who donated. They've given me my life back."
For further information, visit www.ika.ie or www.rip.ie
At 28, life was good for Triona Sheehan. Living happily with her husband Harry in Greystones, Co Wicklow, Triona loved her job in IT. She had a son of seven whom she adored, and to crown her joy she was pregnant with her second child.
Then, while eight months pregnant, Triona developed complications. "I had protein in my urine, and oedema -- fluid -- in my legs too," she says. "I was taken into hospital, and, realising I had a kidney malfunction, they brought in a specialist from St Vincent's.
"I was getting progressively worse each day. They decided to take the baby out early to stop the regression, but it didn't work. The condition kept progressing, and when Holly was six weeks old, I was put onto dialysis."
Dialysis is a process that removes the waste products from the body by passing the patient's blood through a filtering machine that mimics the kidneys.
Triona performed peritoneal dialysis, at night, at home. Fluids were passed through her abdomen, in a tube, into the abdominal cavity to remove wastes from the blood, and she would connect it up each night.How did she cope? "It was a shock," she says. "But the first year was easier than the second. I could actually function normally. I was doing the dialysis at night -- my husband, Harry was the one getting up to do the night feeds -- and I was going into the clinic every eight weeks. I thought, "this isn't too bad for a critical illness.'
"Since then, though, I have been sick a few times. I've had peritonitis three times; that's like having a burst appendix.
"You get progressively worse on dialysis," she explains. "In the second year I became lethargic. I've got the onset of osteoporosis; I've got muscle atrophy, and my heart is under pressure. I've become anaemic too. I'm getting to the stage where I can't manage everyday life.
"It's hard coping with one income and I'm not used to being stuck at home. I can't get the children up every morning, and I can't clean the house. Luckily, I have a supportive family," she says. "Harry is amazing, and one of my sisters comes in and helps me." And the children -- who are now nine and two -- suffer as well.
"Karl started acting up a year ago when he realised I can't do what I could before. It's difficult for him. He knows exactly what is going on, and has heard my family talking about it. He understands. He turned round one day and said, 'mummy, you can have my kidney'."
"Holly understands, too. She comes and sits on my bed all day when I am sick. It's tough on them and everyone, but I have to make the most of the situation." Triona has been on the transplant list for two years now. "We're hanging on just hoping," she says."I am a stronger person than I was," she says. "And I'm less naïve. It has made us closer as a family. We know, now, that bad things can happen. We take life day by day."
Last year, 234 people in Ireland had an organ transplant, and it was all thanks to the generosity of 91 deceased donors and their families. That makes it a record year, but there are still 600 people waiting for a transplant.
Presumed consent
In England, they have been debating the laws around the issue of organ donation.
The Government Chief Medical Officer, Sir Liam Donaldson, suggested that everyone's organs should be available for transplant after death, unless they state otherwise -- in effect presumed consent.
Mark Murphy, CEO of the Irish Kidney Association, is not in favour of presumed consent. "In Ireland we have informed consent, and I strongly believe that is the best way," he says.
And it's not enough for people to carry a donor card. They have to tell their families because, in the case of death, it is the next of kin who gives permission for the organs to be donated.
"Most people are willing to donate and the family are not aware of it," he says.
"We don't talk about death within the family; it is not the Irish way. But if more people let others know how they feel, relatives won't be trying to second guess it when their loved one dies."
The problem, Murphy says, is the timing. "In that moment when someone is dead, but a machine is making their blood go round, it is hard to realise that they are dead. And that dreadful moment is the only time we have, to ask about donation.
"There are countries in the EU who have presumed consent, but they don't use the law. The next of kin is still allowed to say no.
"Spain has the law, and say it didn't make a difference in the refusal rate; but there, they ask a great deal more people if they are willing to donate.
"Every intensive care unit in Spain has a donor co-ordinator. They will stay with the families as long as they are needed."
Meanwhile, Mark is busy raising awareness. He is in Thailand with the 23-strong Irish team for the 16th World Transplant Games.
While there, his pitch to hold the 2010 European Transplant Games in Dublin was sucessful
At least 21 countries will take part in the games from all the way across Europe.
Over 450 athletes will come to Dublin and demonstrate how fit they are with new kidneys, livers and hearts.
Double transplant
However, only one of them has received a double transplant. Bridie Nicholson from Sligo received a new kidney and a new pancreas in 2000.
"I'd had diabetes since I was a child. I was insulin dependent," says Bridie, who is in her early 40s. "And as I grew up, I got complications.
"For the first six months I used a machine at home. I'd get back from work, go for my walk, and go on the machine for 10 hours. But then I got sick and had to go into the hospital system."
There Bridie had haemo-dialysis -- which involved running her blood through an artificial kidney machine. Then, late one Tuesday night, the call came. A kidney and pancreas were available at Beaumont Hospital.
"I was so excited, I thought I would never get to theatre quickly enough" says Bridie.
The operation went well, although afterwards Bridie had a setback. she developed a clot and ended up in intensive care.
"But I got over that, and every day I felt a bit better," she says, praising all the nurses and staff who looked after her so well.
Seven years on, Bridie is fighting fit.
"Walking out of hospital on a cold winter's evening knowing I had survived a double transplant -- and no longer had diabetes -- nothing replaces that feeling," she says.
"I am so grateful to the family who donated. They've given me my life back."
For further information, visit www.ika.ie or www.rip.ie
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