Monday, May 31, 2010

DONATE LIFE ORGAN DONATION AWARENESS-UNITED STATES

Source: American Medical Association
PROFESSION

Organ donation should be part of health discussions


How should a primary care physician discuss organ donation with patients?

Scenario: How should a primary care physician discuss organ donation with patients?

Demand for organs in the U.S. continues to outpace the supply of donor organs available. More than 107,000 people were on the United Network for Organ Sharing's waiting list as of mid-May. Transplantation is unique among situations of medical resource scarcity in its dependence on donors, including living donors.

Reply:

The supply of transplantable organs in the U.S. is entirely dependent upon individuals' willingness to make their organs available voluntarily, either at the time of death or as living donors.

In light of the compelling need for donor organs and our dependence on voluntary donation, there is value in giving people the chance to consider if organ donation is right for them.

Experience has shown that too often our "systems solutions" lead to perfunctory inquiries that merely demonstrate compliance with a requirement. Consider, for instance, the manner in which the mandates of the Patient Self-Determination Act have been implemented by many health care facilities and clinicians. A registration clerk may ask about advance directives, and a pamphlet explaining them may be tucked in among other registration documents. Similarly for organ donation, when one gets a driver's license, there may be a box on a form or a clerk inquiring about one's wishes regarding organ donation. Although these approaches technically fulfill a mandate, they clearly do not engage individuals in contemplation about what they fundamentally value.

This is not meant to suggest that the primary care office visit should become the venue for philosophical speculation. Nevertheless, the primary care relationship can provide the context and an entrée for conversations about a range of advance care planning issues, including organ donation.

Optimal advance care planning compels us to understand patients' wishes and the values that drive them. Merely determining if one has or wants an advance directive or donor card is insufficient. An exploration of patient values allows for a richer understanding and more nuanced approach to decision-making for physicians and any who might serve as surrogate decision-makers.

This all sounds well and good ... and totally impractical for a busy clinical practice. A point I would willingly concede, if I were suggesting that an entire discussion of patient values could or should be neatly packaged and contained in a single office visit.

Actually, absent some pressing need to clarify advance care planning (for instance, on admission to the intensive care unit), this conversation is better pursued over time. Even planting the seed during an office visit, however, requires effort and preparation.

In a new patient visit or a health maintenance visit, the social history provides an occasion for framing the patient's context for decision-making. For example, in reviewing marital status or living arrangements, one might ask, "Who would you rely on to help you make medical decisions?" or "Is there anyone you want us to include in decisions or in sharing health information?" This approach also can prompt clarification about Health Insurance Portability and Accountability Act disclosures to one's spouse or other family. Similarly, in this context, one may wish to explore issues of religious affiliation or participation in a faith community.

Likewise, in reviewing the pertinent family history, an opportunity may arise to explore a patient's experience of end-of-life care, such as one's reaction to a parent, spouse or sibling's illness and death. This information may clarify the patient's wishes for the goals of care at the end of life. Similarly, a family history of organ failure, such as end-stage renal disease or its treatment, provides an occasion not only for thinking about the patient's health risk but also for considering his or her exposure to, and attitudes about, organ donation and transplantation.

Although familiarity with these issues is becoming increasingly common, introducing these topics may not occur naturally in an office visit. Providing a health planning summary at the end of the visit can be a segue to introducing or revisiting the topics. Just as one might summarize health and wellness advice or recommendations for preventive services, a review of advance directives normalizes the expectation that this is part of good, routine primary care. This approach can avoid the impression in the patient's mind, "I must be dying if she is talking to me about these issues," or "If I sign a donor card, they won't work as hard to keep me alive." Instead, it allows the physician to frame the discussion as, "These issues are so important that I discuss them with all of my patients and, from time to time, I hope we may revisit them."

In the acute care setting, it can be confusing to discuss the entire spectrum of advance directives, so there may be a tendency to focus on the living will or durable power of attorney for health care. Likewise, discussions of do-not-resuscitate orders may be appropriate in that context. Conversations with patients or families about organ donation in the acute care setting are emotionally charged, often calling for explanation of technical issues or processes, and are therefore best left to those most knowledgeable and best prepared to address them, such as the regional organ procurement organization representative.

Nevertheless, there are several advantages to the physician's having previously talked about organ donation. First, it can be raised in a less emotionally charged setting. It also allows the individual who would be the donor to make the decision, rather than his or her surrogate. Further, it may give individuals a chance to inform potential surrogate decision-makers of their wishes about organ donation or to enter their decision in a state-based organ donation registry.

The proportion of adults who have made a deliberate decision not to be organ donors seems relatively small; likewise, the proportion of those who have registered their intent to be donors is also modest. Allowing the undecided group to reflect on the impact of organ donation can have a profound effect. The doctor's experience with patients who have had or will need transplants can put a face on the compelling need that often is not captured well by soaring waiting list data. Personal exposure to this need and to the beneficial outcomes of transplantation may influence those individuals in the uncommitted group, leading them to make affirmative decisions about postmortem donation.

The doctor's guidance in an individual's consideration of living organ donation may present a more difficult challenge.

First, the consideration of living organ donation is most commonly seen in a loved one's need for a transplant; these situations may be colored by complex psychosocial considerations about which physicians have unique insight. Further, the relevant medical contraindications (such as pre-hypertension or pre-diabetes) may become increasingly fuzzy in the face of a prospective donor's insistence that he or she is willing to consent to increased risk. Here, the physician's unambiguous commitment to the donor's well-being, serving as a staunch advocate, is critical.

Physicians increasingly are encountering people exploring the possibility of living organ donation as a so-called "good Samaritan" or "altruistic stranger" donor; that is, one without a specified family member, friend or acquaintance as the designated recipient. The best source of information or route for such a prospective donor is difficult to determine. Whether organ procurement organizations or transplant centers serve as the more appropriate point of contact for individuals considering altruistic living donation varies around the country.

Regardless, physicians can serve a navigator function, directing patients to reputable sources of reliable information. The doctor's commitment to the patient's well-being may demand more than top-notch clinical care; assisting patients in navigating and assessing complex information becomes particularly critical in facilitating decisions about organ donation.

Primary care clinicians are uniquely positioned to appreciate both the need for and benefit from organ transplantation. Likewise, we have an opportunity to signal to our patients the importance of considering the merits of organ donation and to ensure that their wishes are honored. In the case of living donation, the primary care field may need to become more assertive in advocating for the patients' interests.

--Mark Fox, MD, PhD, associate director, Oklahoma Bioethics Center; associate professor, School of Community Medicine, University of Oklahoma


DONATE LIFE ORGAN DONATION AWARENESS-LOUISIANA

In Rapides Parish, Bolton High artists paint with passion and purpose

BY KARINA DONICA • KDONICA@THETOWNTALK.COM
Monika Daniels and Megan Elliottsmith have always enjoyed painting as a means of personal expression.

It's always been fun to use different techniques and colors to convey thoughts and ideas and then have your friends comment on it, say the students at Bolton High School in Alexandria.

But when they were tasked with creating art for the Louisiana Organ Procurement Agency and the Legacy Donor Foundation, they realized their impact could go far beyond their friends and family.

It was a growing experience.

"When making a poster, you are trying to make it work for the organization but at the same time you want to make it work for yourself and I think this really did both," said Monika, a 15-year-old sophomore.

Monika's poster illustrates human organs inside precious gems. "I wanted to show all the little gems that are inside people," Monika said.

Monika won first place in the Donate Life Louisiana 2009-10 contest and Megan, 18, a senior, won second place.

"I was really excited and really surprised because I really didn't think I would win at all," said Megan, who painted human nerves to represent a less popular organ. "I really like the way it looks, and since you can donate nerves, why not put it there?"

The Bolton High School students' art were among 69 contestants from across the state who were challenged to create art inspired on the importance of organ donation.

"I personally feel strong about organ donation so I decided to have my students participate," said Tracie Campbell, art teacher at Bolton.

Organizers of the contests said there are more than 105,000 people in the country waiting for life-saving organs transplants and 1,800 in Louisiana. Officials said the school competition helps share information on the significance of organ and tissue donation, therefore empowering the community help those in need.

Campbell said it is the first time the school has participated. "I was thrilled. We never won anything like this before," said Campbell, who originally had about 100 students participate. Campbell chose the two winning entries.

Daniels received an iPod shuffle, a trophy and a LOPA goodies bag, while

Elliotsmith got an iPod nano and a trophy. Campbell received a $250 gift card.

Campbell plans to make her students' participation an annual event. "The kids enjoyed it and the fact that the first time we entered it and we won first and second is a way to inspire them to do the contest next year," Campbell said.





DONATE LIFE ORGAN DONATION AWARENESS-NEBRASKA-DONORS IN DEMAND

Social Worker gives an anonymous gift of life


video
(Video may not display on iPads)
By Rachel Lake - At any given time, about 200 people in Nebraska are on a kidney transplant waiting list. They sometimes wait months, even years before finding a match. But recently a match was found for a man on dialysis… And that match came from a complete stranger.

As a social worker, Michelle Jack has served hundreds of dialysis patients over the years... But there is the story of one patient she will never forget.

“We had a patient who received an anonymous donation a number of years ago and it was the most miraculous thing really for him and one of the things that he said that stuck with me is that "I got my life back" so that's what I was hoping to do for some else,” said Michelle Jack.

So last year, Michelle decided to become an anonymous donor. “And that day I just decided that I had a good kidney that somebody could use,” said Michelle. Michelle contacted Omaha's Nebraska Medical Center... And the ball started rolling. “When I started the donation process I asked that the recipient be someone from Nebraska and on dialysis,” said Michelle.

Doctors found a man that met both criteria and scheduled a date for surgery. “The closer we got to surgery I had a few second thoughts. I kind of just though jeeze what did I get myself into but it just kind of came back to me that everything's gonna be okay,” said Michelle.

And everything was okay... The recipient's body accepted Michelle's kidney within an hour of the transplant. And Michelle said she is just as healthy as before.

“Life is back to normal, I'm doing everything I was before and hope the recipient can do the same,” said Michelle Jack.

Michelle is now sharing her story in hopes that other people will consider being donors. “To cause people to stop and think about the fact that they have an extra organ that somebody else could benefit from and that they can live a normal life if they were to donate,” said Michelle. To this day, Michelle does not know the identity of the recipient... But said she would like to meet him.

DONATE LIFE ORGAN DONATION AWARENESS-HUNTINGTON BEACH, CALIFORNIA


(Click HERE to visit the Tawn Mastrey Foundation)

Members of Dio, Great White and Xyz come out to rock with local Tribute bands Metal Knights, Masters of Reality and Lights Out to help raise much needed money for radio legend Tawn Mastrey at Martini Blues in Huntington Beach this past weekend.

Just a few months ago it was announced that hard rock radio
legend Tawn Mastrey had to quit her job at Sirius Satellite Radio due to health issues. Tawn is suffering from Hepatitis C and is in need of a life saving liver transplant. Having found herself in the position of not having any health insurance, major Rockers from all over are coming to her aid to help raise the needed funds so that she can have this life saving transplant.

This past Saturday night, July 28th at Martini Blues in Huntington Beach
a "Tribute for Tawn" took place with local metal tribute greats Metal Knights headlining a sold out show that included Masters of Reality and Lights Out as well as an all star jam at the end of the night that included Craig Goldy and Simon Wright from Dio, Tony Montana from Great White and Terry Ilous from Xyz. The show was an overwhelming success in that 100% of the door proceeds from the sold out event went to the Tawn Mastrey Supplemental Needs Trust as well as a Silent Auction and Raffle which brought in about an additional $1000 in cash for items such as a Bass signed by all members of Dio, including Ronnie James Dio and Rudy Sarzo.

The night was hosted by Knac.com on-air personality Diana Deville who got the crowd fired up between sets and informed them of how each and everyone could become an organ donor.

Donate Life America provided "DONATE LIFE" Flouresent green wrist bands and dog tags and donations were taken for Donate life from the sale of these items to help spread awareness and to help people learn how to become an organ donor. Please visit www.donatelife.net for more info.

The shows headliners Metal Knights is fronted by Robbie "Razor" Robfogel himself a transplant recipient. "Having worked in radio on air in the late 80s and early 90s I knew Tawn from that period and she was always so helpful to me that when Rudy Sarzo called to tell me of Tawn's situation and Rudy knowing what I went through I knew that I could help in some way to guide Tawn and her loving sister Cara through the medical side of things since I had been through it myself", states Robfogel. "This night of rock at Martini Blues was something that I helped put together, with the help of Jackie Davis who books the venue, and let me tell you that putting on a benefit is not an easy task. But I believe wholeheartedly in organ donation and the importance of getting the word out to help save lives. I have this past year become very involved with Donate Life America and Donate Life Rocks to help spread the word and tell people how important it is that we build up the organ donor pool in the country."

Robfogel goes on: "Tawn Mastrey is a perfect example of someone who is famous to many, but didn't have insurance and we all know that when it comes to medical care money talks in this world today. So we are doing what we can do to raise whatever we can to help Tawn right now. She needs medicines in the pre-transplant phase and certain organic foods to keep her healthy enough to withstand such a long operation
. Through our show this past weekend we were able to raise well over $2000 for her and this was just a little venue. Steps are in motion to have much bigger concerts at much larger venues with big name rock n roll stars. Tawn touched and helped a lot of musicians in the hard rock scene in her time on the air, and they want to come out and play to help her now."

The show was helped made possible by Sennheiser USA who donated an incredible wireless
set up for Metal Knights as well as Studio-949 owner Jeff Bresnahan who handled sound reinforcement for the 00004000 show.


Sunday, May 30, 2010

DONATE LIFE HOLLYWOOD - "THREE RIVERS" DONATE LIFE AMBASSADOR ALEX O'LOUGHLIN HOLLYWOOD, CALIFORNIA

"THREE RIVERS" CBS - AIRING SCHEDULE


Thank you Tenaya Wallace, Director, Donate Life Hollywood for posting this

We understand that Tenaya will be working diligently to bring us summaries of 109-112 in addition she will have a press release together about Carol Barbee, show creator, and her Crystal Heart award.

JUNE 5, 2010 - #100 - WIN-LOSS (OTO - Sat 8:00- 9:00PM)

JUNE 12, 2010 - #109 - A ROLL OF THE DICE (OTO - Sat 8:00- 9:00PM)

JUNE 13, 2010 PREEMPT: 64TH ANNUAL TONY AWARDS

JUNE 19, 2010 - #110 - EVERY BREATH YOU TAKE (OTO - Sat 8:00- 9:00PM)

JUNE 26,2010 - #111 - CASE HISTORIES (OTO - Sat 8:00- 9:00PM)

JULY 3, 2010 - #112 - STATUS 1A (OTO - Sat 8:00- 9:00PM)


Please get the word out!

INTERNATIONAL ORGAN DONATION AWARENESS-NETHERLANDS

Source: Alex O'Loughlin Fans for Donate Life

YES OR NO (JA OF NEE) is a large campaign the donate organisation has started in the Netherlands. It is posssible to register online with your DigiD id.
I cannot emphasise how important donor registration is. Hundreds of people die every year because there aren't enough organs or tissue.

If you have any questions, visit the dutch site
Donorvoorlichting or look at the site of the Department of Health Donorregister.

Thank you.

JA OF NEE is een grote campagne die de organisatie voor donorregistratie is begonnen in Nederland. Het is mogelijk om je meteen aan te melden voor registratie met je DigiD code.
Ik kan niet benadrukken hoe belangrijk dit is. Jaarlijks sterven er honderden mensen omdat er niet genoeg organen of weefsels zijn.

Voor vragen bezoek de site
Donorvoorlichting of ga naar de site van het ministerie van gezondheid Donorregister.

Bedankt.

DONATE LIFE ORGAN DONATION AWARENESS-TUCSON, ARIZONA

AFTER 4-YEAR WAIT, DONOR ORGAN COMES FROM A STRANGER AFTER 4 YEARS ON LIST FOR TRANSPLANT, DONATION STRANGER STEPS UP

Craigslist kidney just in time

Stephanie Innes Arizona Daily Star

On the left Jessica Cameron,cq,(JESSICA CAMERON), and Diane White,cq,(DIANE WHITE), hug each other and are holding back tears as they meet each other for the first time Thursday May 27, 2010,cq,(THURSDAY MAY 27, 2010) in Tucson, Arizona. Jessica gave Diane a kidney. Photo by Benjie Sanders/Arizona Daily Star

Diane White had been living without any kidneys for three months and had been on a transplant waiting list for more than four years when she received a call about a potential donor.

Weak and tired from spending nine hours a week in dialysis, White had begun praying more than usual. She was thirsty and suffering from headaches. She couldn't urinate, so she was only allowed to drink as much liquid as her body could absorb.

She'd had calls about donors before, but they'd always fallen through.

"This one felt different," said White, a 46-year-old southeast-side resident and mother of an adult son.

It was. And "different" would be a good way to describe that March 29 call, too. White is now recovering from a kidney transplant that by all indications was successful. It was also highly unusual.

Few transplant recipients receive kidneys from complete strangers who are still alive. And few find their donors on Craigslist - though the strategy could catch on as doctors and transplant coordinators increasingly encourage people needing kidney transplants to seek out living donors.

Statistically, it was a long shot for White to expect that a stranger would to step up and offer such profound, invasive help. Normally, organs for people on the waiting list come from deceased donors. In fewer than 3 percent of cases, an organ will come from a living, anonymous donor.

White had exhausted her options. Her husband, Stuart, was the wrong blood type. Her son, Nicholas, has spina bifida and wasn't considered healthy enough to be a donor. She tried a church newsletter and asked friends and other relatives.

There were volunteers, but no match.

The waiting list wasn't promising, either. White has Type O blood, the most common type and in the highest demand, so her spot on the list was barely moving up.

Trying Craigslist

In a healthy person, the kidneys - two organs in the upper part of the abdomen, toward the back - are each about the size of a fist.

Until they were removed in January of this year, White's kidneys had been as big as footballs, engorged by fluid-filled cysts from a genetic disorder called polycystic kidney disease.

She was diagnosed in 1998 and by August 2007 her kidneys were in such bad shape that her doctor said it was time to go on dialysis. She'd already been waiting two years for a kidney.

As she waited, Tanya Gutierrez - a woman White had met in dialysis - got fed up with her own wait.

Gutierrez, now 36, had a kidney transplant at age 19 but needed another. Her husband saw a CNN story about three sisters who found a kidney donor for their ailing father on Craigslist.com, a popular website for free classified ads.

"People sell all kinds of things on Craigslist. A lot of people read it," Gutierrez said. "And I didn't want to just sit around and wait. I wanted to do something for myself."

She posted an ad on May 3, 2009.

Responses poured in, many from people who insinuated that they wanted money, which ruled them out. Selling organs is illegal, so donors can take no compensation.

Then a 37-year-old single mother in Phoenix read the ad while she was on Craigslist to sell some of her son's toys. Three months later, Gutierrez had a new kidney and is now close friends with the donor.

Another man who answered the ad decided to give his kidney anonymously to someone in need.

"I never in a million years thought something that good would happen to me," Gutierrez said. "It's a miracle and a blessing."

Annette Whinery, the coordinator of University Medical Center's living donor program, says it is becoming common for patients to look for living donors - usually through church, work and friends.

Organs from a living donor have a shorter time outside of the body on ice. The shorter the "cold ischemic time," the better the outcome, Whinery said.

It's still rare, though, that a living donor is a stranger.

"A lot of them have had someone on dialysis who they could not help," Whinery said. "Or they are just very good people who out of the goodness of their heart can't stand thinking of other people suffering. It's like giving blood for some people."

Overcoming pride

Although she knew Craigslist had worked for Gutierrez, White was reluctant to take the same step.

"I didn't want to sound like I was begging," she said. "I don't like asking for help"

But she needed a kidney. So she typed up a simple listing under "community news and events."

"My name is Diane White and I am in dire need of a kidney," it said, going on to describe her condition, her family and donation details.

"Thank you and may God bless," it concluded.

Several media outlets ran stories about White's ad and soon she was barraged with offers of help from all over the country. More than 15 calls came in the first week. Whinery began working down the list, contacting prospective donors and screening them.

"We rule out more people than we use as donors," Whinery said.

One volunteer she contacted was Jessica Cameron, a 28-year-old Sierra Vista educator who served in Iraq in the U.S. Army in 2003. Cameron grew up in a family that donated blood and liked to volunteer.

"I have two kidneys," Cameron said this week, "and I only need one."

Because of the massive outpouring, at first it looked like Cameron's help wouldn't be needed.

But when the transplant program notified her earlier this year that everyone else had fallen through, Cameron drove to Tucson and went through three days of screening tests and a complex medical workup.

Donors must be in excellent health - no heart disease, diabetes or high blood pressure. They also need good kidney function, and to have a healthy weight. Also, donors must undergo a psychological evaluation.

Cameron's mother came to Arizona for the surgery and helped take care of her daughter while she recovered. Cameron is taking five weeks off work and said the pain when she woke up was worse than she'd anticipated. But she is not expected to have any lasting effects other than three little scars on her abdomen and one longer one below her bikini line.

She has no regrets.

White's medical insurance covered all the expenses of the donation, including pain medication and follow-up checks.

"They told me to avoid contact sports and I haven't wanted to do that in the last five years. I don't see myself developing an urge, either," Cameron joked. "The big pain is over now, so I'm going on with my life as normal."

If Cameron is ever in need of a kidney transplant herself, her status as a donor would push her to the top of the waiting list.

"We are very protective of the donor," Whinery said.

Cameron is reluctant to talk much about herself or her gesture and says she doesn't think she did anything particularly special. What she would like is for more people to consider being living donors.

"The only reason I'm talking about it is so that maybe other people will think about doing this," she said.

White got out of the hospital May 20 after suffering a complication - a tear in her bladder. She's on the mend now and expects to make a full recovery.

"It was such a good match. I started making urine as soon as they put it in," said White, who met Cameron for the first time on Thursday.

White and her husband Stuart are now looking forward to traveling, something they couldn't do while White was on dialysis. She wants to go to Italy.

"To be so unselfish, it just blows me away," White said of Cameron. "She has given me a chance to live out the rest of my life."

By the Numbers

Kidney transplants at Tucson's University Medical Center:

• Transplants in 2009: 86

• Percent from living donors: 36

• Number of Arizonans waiting for a kidney transplant: 1,392

• Number of Americans waiting for a kidney transplant: 85,066

• Median wait time: 1.7 years to 5.6 years, depending on blood type

SOURCES: University Medical Center, U.S. Department of Health and Human Services

How to Register

To register as an organ donor visit donatelifeaz.org or call 1-800-94-DONOR.

"To be so unselfish, it just blows me away.

She has given me a chance to live out the rest of my life."

Diane White, talking about Jessica Cameron, who donated her kidney to White after seeing a community news item on Craigslist