Record number of hospitals in Ontario championing organ and tissue donation

TORONTO, Oct. 29, 2013

Digital Journal

Nearly 30% more hospitals formally supporting organ and tissue donation than a year ago

TORONTO, Oct. 29, 2013 /CNW/ - Fifty hospitals are working with Trillium Gift of Life Network (TGLN) to promote and create a positive culture of organ and tissue donation in Ontario. That is an increase of nearly 30 per cent from a year ago.  By the end of 2013 there will be 55 hospitals and by next year, all 60 hospitals in Ontario with capacity to facilitate organ donation, will notify TGLN when a patient has died or is at high risk for imminent death to ensure that all potential opportunities for donation are identified.

Hospitals are also helping to promote organ and tissue donor registration in their communities and actively encouraging their staff to register consent for organ and tissue donation through registration drives. Since April 2012, 24 hospitals have run registration drives with the most successful to date being the tri-hospital drive done by University Health Network, Hospital for Sick Children and St. Michael's Hospital, which achieved almost 3,600 visits to Ontario's online donor registry.

"St. Michael's is proud to be a leader in organ and tissue donation and transplantation in Ontario," says Dr. Robert Howard, St. Michael's Hospital President and CEO. "The work we do in our hospital to facilitate organ and tissue donation at end of life and to encourage staff to register results in more lives being saved and enhanced in Ontario.

New data available today at www.BeADonor.ca shows that as of September 30, 2013, 24 per cent or 2.78 million Ontarians have registered their consent to save lives through organ and tissue donation, an increase of 57,806 registrations since June 30, 2013.

"Support for organ and tissue donation continues to grow in every part of our province. This is in large part because of the work of our hospital partners in their communities," says Ronnie Gavsie, TGLN President and CEO. "Our goal is to ensure that at end of life, all opportunities for organ and tissue donation are identified and pursued with family consent to save and enhance as many lives as possible."

Quick Facts:

• As of September 30, 2013, there were 1,483 people in Ontario waiting for a lifesaving organ transplant.
• One donor can save up to eight lives and enhance the lives of up to 75 more through the gift of tissue.
• Top five communities with the most improved registration rate, since June 30 to September 30, 2013 include: Hawkesbury, Essex, East/Central Prescott and Russell, Renfrew, and Cornwall.
• Ontario has made it very simple to register consent for organ and tissue donation: online at www.BeADonor.ca, in person at a ServiceOntario centre or by mail, download a copy of the consent form at www.giftoflife.on.ca.

Trillium Gift of Life Network is a not-for-profit agency of the Government of Ontario responsible for planning, promoting, coordinating and supporting organ and tissue donation for transplantation across Ontario and improving the system so that more lives can be saved.

SOURCE Trillium Gift of Life Network

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Lung transplant recipient overwhelmed by offers of support

By CINDY E. HARNETT / TIMES COLONIST 

A Saanich (British Columbia) man recovering from his second double-lung transplant is overwhelmed by the support he has received since his story was shared in the Times Colonist this month.

 Photograph by: LYLE STAFFORD, Times Colonist

James Reimer, 29, born with the genetic disorder cystic fibrosis, appealed for exercise equipment or a gym membership to help him recover after his second double-lung transplant was performed in Toronto on May 29.

Reimer was weak when he returned to Saanich on Sept. 18. He had waged a tireless fight for his life in hospital after it seemed like his body would reject his new lungs.

In answer to his appeal, Reimer, who grew up on Saltspring island, received a flood of offers, including a new Diamondback exercise bike from a local couple.

“I already feel the difference,” Reimer said. “It will help me get a lot stronger.”

Another family in Sidney has an elliptical machine waiting for him.

Reimer also received many offers of gym memberships, from such facilities as: Panorama Recreation Centre, the Pacific Institute for Sport Excellence on the Camosun College Interurban campus, Vikes Athletics and Recreation at the University of Victoria, and One to One Fitness.

A woman with lung disease also offered to pay for several yoga lessons for Reimer at the Iyengar Yoga Centre in Victoria.

Kathy Reimer, James’s mother, said the family was flooded with emails after the story appeared and has been buoyed by an outpouring of sympathy and support from across Vancouver Island and several prayer groups on Saltspring Island.

The family also has been helped along the way by community and online donations.

James Reimer’s older sister, Laura Jane, died of the same disorder in 1982, when she was five years old.

About five per cent of adults who undergo a double lung transplant will suffer a catastrophic surgical complication in the first few weeks. Another 10 to 15 per cent will die within the first year from an infection-related complication. By five years after a transplant, 60 per cent are still alive.

It’s projected that soon, 50 per cent will make it to 10 years.

Reimer had his first double-lung transplant in Toronto on May 12, 2011. A year later, he married his wife, Adena, and the next day his body began to reject those new lungs.

He is now breathing with his third set of lungs.

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Donate Life Float to Honor Living Legacies of 81 Organ, Eye and Tissue Donors in 2014 Rose Parade®

As long ago as I can remember one of the favorite things I like to do on New Year's Day is watch the Rose Parade and since my lung transplant I've made it a point to watch for the Donate Life Float. The parade is covered by all major TV networks and I especially like the coverage that KTLA, Los Angeles provides starting much earlier than the networks. Most TV providers run it as a super station. They get up close with each float and provide great descriptions. 2014 will be the 125th anniversary of the parade and include 45 floats.

Memorial "Floragraph" Portraits Represent 34 States, Korea and Taiwan; Dozens of Families to Apply Finishing Touches to Portraits at Local Events

"For many of their families, this is a unique opportunity to see their loved one shine before millions of people worldwide and to gain special recognition for their gifts of life and hope."

From Massachusetts to Hawaii and across the Pacific to Korea and Taiwan, the families of 81 organ, eye and tissue donors will complete memorial "floragraph" portraits of their loved ones that will "Light Up the World" as beacons of hope in the 2014 Rose Parade. Each honored individual is remembered by their generosity, compassion, and lives saved and healed through donations after death. The floragraphs will grace the lanterns of light that illuminate 30 float riders – all transplant recipients – and the 12 living donors who will accompany them on foot along the five-mile route seen by more than 40 million viewers nationwide.

"The donors' families and dozens of volunteers will decorate the portraits with grains, flowers, seeds, spices and other organic materials," said Bryan Stewart, chairman of the Donate Life float committee and vice president of communications at OneLegacy, the nonprofit organ and tissue recovery organization serving the greater Los Angeles area. "For many of their families, this is a unique opportunity to see their loved one shine before millions of people worldwide and to gain special recognition for their gifts of life and hope."

Read the Rose Parade Donate Life Float press release.

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Desperate plea for IPF patient needing lung transplant

"My name is Dan Bachmeier and Tracey Patterson is my partner. She may have been in contact with you, but I thought I would give you an update.

Tracey began showing IPF symptoms about 21/2 - 3 years ago. It was about a year ago that she went into St Joseph in Hamilton ON for a biopsy for a final diagnosis.

Three days after the biopsy she crashed and was intubated. She was in a drug coma fro 3 1/2 weeks, after which she couldn't move. After 10 weeks, she was sent home, using a walker, and she has been in constant physio ever since. She has regained some strength, but her weakening lungs prevent real strength exercises.

She was finally listed for lung (1 or 2) transplant on Sep 17 2013. Her oxygen needs have been growing for the past few months, and she has now become an inpatient at Toronto General. Her condition continues to deteriorate quickly, and she may need to begin ECMO therapy (Extracorporeal membrane oxygenation)

until her transplant. Her O2 sats drop to 70 when using the commode next to the bed, so she now has a catheter.

Tracey is scared almost to death. She knows that the only way she can ever go home, is with new lungs. But donors have been non-existent lately. Due to her dire need, she has moved near the top of the transplant list. It is a very nerve wracking time for everyone in her life. We are all saddened by the need for someone else to lose their life, so that she and others might live.

Please feel free to add her to your blog, if you wish. If her story can attract even a single new donor, then it is worth sharing.

Dan"

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Lungs awaiting transplant preserved 11 hours outside body

Lungs awaiting transplant preserved 11 hours outside body at room temperature

From Medical Technology Business Europe 

"Normally, the lung transplant is carried out before the liver transplant. A donor lung typically can only be preserved outside the body for a maximum of ten hours. And a lung transplant can only be successful if the liver is still working properly. That is why we needed to transplant the liver before the lungs for this patient. To keep the donor lungs in good shape long enough after removal from the donor and prior to transplantation, our medical team used a new preservation technique."

A transplant team at University Hospitals Leuven (Belgium) has successfully preserved a set of donor lungs for over eleven hours while waiting for completion of the patient's emergency liver transplant.

The world record preservation time was achieved with the help of a machine, the OCS Lung, that provided continual flushing and oxygen at room temperature, replacing the usual ice preservation.

The patient has since left the hospital and is in good health. The patient, who suffered from chronic lung failure, developed sudden acute liver problems and went into a coma. This gave the surgical team the only option of doing a combined lung and liver transplant.

The OCS Lung machine continually flushes and
oxygenates donor lungs at room temperature.

Such double transplants pose a serious timing problem, says Dr. Dirk Van Raemdonck, who helped perform the surgery: "Normally, the lung transplant is carried out before the liver transplant. A donor lung typically can only be preserved outside the body for a maximum of ten hours. And a lung transplant can only be successful if the liver is still working properly. That is why we needed to transplant the liver before the lungs for this patient. To keep the donor lungs in good shape long enough after removal from the donor and prior to transplantation, our medical team used a new preservation technique.

"The machine enabled us to keep the lungs outside the body for more than eleven hours with no negative effects, the longest period ever reported – a world first."

The machine also provides an analysis of lung quality and can even improve lung function in anticipation of the transplant. A similar machine already exists for kidneys and results show that older kidneys preserved using that machine functioned better immediately after transplantation than kidneys preserved on ice did.

Currently, however, the new technique is not being reimbursed by insurance providers. The technique is being used only in special cases. Costs for this transplantation were covered entirely by University Hospitals Leuven and the maker of the machine.

The combined lung and liver transplant was performed last July by University Hospitals Leuven's multidisciplinary transplant team, which includes specialists in hepatology, abdominal transplant surgery, pneumology and thoracic surgery.

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Northern Ireland Transplant waiting list rises as families refuse consent

The Belfast Telegraph

Just one-in-three people in Northern Ireland have signed up to become organ donors.

Despite a transplant waiting list of 190 people and up to 15 deaths-a-year, only 31% of the population has joined the NHS organ donor register.

Dr Eddie Rooney chief executive of the Public Health Agency (PHA) warned: "In Northern Ireland almost 200 people are currently waiting for a transplant and sadly the chance will come too late for many."

Last year, 123 transplant operations were carried out in hospitals across Northern Ireland. However, the level of demand has hit an all-time high, having jumped by 40% since 2001.

By becoming an organ donor one person can help save or significantly enhance the lives of nine others.

Dr Rooney, who also chairs the Northern Ireland committee for organ donation and transplantation, added: "Organ donation really is the gift of life. The generosity of donors and their families enhances or saves the lives of recipients across Northern Ireland."

General support for the concept of organ donation for transplantation is high (84%) and the majority of people (78%) said they would take an organ if they needed one.

But even though the number of names on the register has increased in recent years, more than a third of families have refused to give consent to the donation of their loved one's organs.

They cited spiritual beliefs, medical distrust and the so-called 'ick factor' over having body parts removed among the main reasons for their opposition.

Of those wishing to donate their organs after death, only 38% had discussed their wishes with family members.

And, despite a massive publicity drive by the Department of Health, around a third (36%) did not know about the organ donor register, with awareness particularly low among the 16-to-29-year-olds and the over 65s.

Around 56% said they would favour changing to an opt-out/presumed consent system – currently being considered by the Assembly – while 18% were opposed to any law change.

The findings are in a new report on public attitudes towards organ donation and transplantation carried out by the PHA.

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Celebrating 30 years of lung transplantation

On November 7th, 1983 Dr. Joel Cooper performed the world's first successful lung transplant and all are invited to a special dinner taking place Wednesday, November 6^{th, 2013} at the Four Seasons Hotel in Toronto to commemorate the 30^th anniversary of this stunning achievement at Toronto General Hospital.

The evening will be hosted by Dr. Keshavjee, Director of The Toronto Lung Transplant Program and Surgeon General of The University Health Network. Dr. Keshavjee is the surgeon who performed my lung transplant over 11 years ago and I look forward to attending this celebration.

Emceed by Ben Mulroney, A Celebration of Inspiration promises to be a fun evening of dining and entertainment. Anyone who would like to attend, please visit www.celebrationofinspiration.ca to purchase tickets.

Dr. Joel Cooper is now Chief of the Division of Thoracic Surgery at the Hospital of the University of Pennsylvania in Philadelphia, PA. At the time of the first successful lung transplant Dr. Cooper was head of thoracic surgery at University of Toronto.

I had the pleasure of meeting and chatting with Dr. Joel Cooper and he was kind enough to tell me the story of the first successful lung transplant. Until that time 44 lung transplants had been attempted worldwide and none of the patients lived more than a few weeks. 

Dr. Cooper had been experimenting with a new drug for treating organ rejection, cyclosporine, and results on tests with dogs were promising. The patient, Tom Hall, 58, was dying from pulmonary fibrosis and had little time left to live. He agreed to be patient number 45 and the rest is history. Previously, the only drug available to doctors was prednisone, but what they didn't know was that although it was a powerful anti-rejection drug it was also a powerful anti-inflammatory drug that prevented the inflammation necessary for wound healing and the airway connections fell apart after transplant. But cyclosporine worked for Tom Hall, who became the world's first lung transplant survivor and cyclosporine is still used today. (I take it twice daily myself).

Visit www.celebrationofinspiration.ca to purchase tickets for the Nov 6th celebration in Toronto.

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Organ regenerating blood vessel cells set to make transplants history

Zeenews.india.com

Washington: Damaged or diseased organs could be healed with an injection of blood vessel cells, which may eliminate the need for donated organs and transplants in future, researchers have claimed.

In the studies, the researchers show that endothelial cells-the cells that make up the structure of blood vessels-are powerful biological machines that drive regeneration in organ tissues by releasing beneficial, organ-specific molecules.

They discovered this by decoding the entirety of active genes in endothelial cells, revealing hundreds of known genes that had never been associated with these cells.

The researchers also found that organs dictate the structure and function of their own blood vessels, including the repair molecules they secrete.

Shahin Rafii, M.D., a professor of genetic medicine and co-director of the medical college's Ansary Stem Cell Institute and Tri-SCI Stem Center, said that together, the studies show that endothelial cells and the organs they are transplanted into work together to repair damage and restore function, says the study's lead investigator.

Rafii, who is also an investigator at the Howard Hughes Medical Institute, said that their work suggests that that an infusion of engineered endothelial cells could engraft into injured tissue and acquire the capacity to repair the organ.

He said that these studies - along with the first molecular atlas of organ-specific blood vessel cells reported in the Developmental Cell paper-will open up a whole new chapter in translational vascular medicine and will have major therapeutic application.

The 2 studies have been published in Stem Cell Journal and Developmental Cell.

ANI

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Irish mother makes desperate plea for donor heart for husband

Shane has been waiting 20 months for a heart transplant

Tricia O'Connell's anguish at delay finding donor for her sick husband Shane

Shane and Tricia

By David Coleman, Irish Mirror

A mum of three whose husband has been waiting for a heart transplant for 20 months has made a desperate appeal for organ donors.

Tricia O’Connell’s husband, Shane, 33, has been forced to live in the Mater Hospital in Dublin since being registered on a replacement list in February last year.

His debilitating Dilated Cardio Myopathy has left him dependant on 35 tablets every day, while an IV Milrinone Infusion pumps drugs though his veins 24 hours a day to keep him alive.

He has been living away from his loving wife and three children; Shauna, 13, Cadhla, aged four and one-year-old Michael.

A devastated Ms O’Connell, who remains at the family home in Castleisland, Co Kerry, revealed the couple are living in a constant state of uncertainty.

She said: “Waiting and hoping for someone to donate is very difficult and is like living in limbo.

“Many patients on the waiting list for a transplant have no quality of life. It cannot be termed a ‘life’ while waiting for a transplant, it is merely an ‘existence’.

“Shane is not bad at the minute but it’s difficult to remain in high spirits when you’re living in a hospital.

“He’s trying to remain upbeat so he can be stable while he awaits a transplant.

“All these treatments are great but if he’s not stable there’s nothing doctors can do.

“He misses our children and looks forward greatly to seeing them at weekends when we travel to Dublin.

“It’s very challenging for us as a family. We have three young small kids and it’s such a long drive from Castleisland all the way up.”

Ms O’Connell also spoke of the importance of families ensuring their loved ones’ organs go to a good cause.

She added: “Organ donation is such a selfless thing for a grieving family to consider but it gives someone else their life back whereas otherwise they would just be existing until their time runs out.

“Its legacy is that it can save the lives of so many people who along with their families will be forever grateful. It truly is a wonderful gift, the gift of life.

“I understand how difficult it is for families to be asked to give up the organs of a loved one.

“I’ve heard people who have agreed to donate a family member’s organs saying it feels great that even after death, they can still help save lives.

“It has been estimated that one person donating their organs can save the lives of five people.

“I hope that European Day for Organ Donation and Transplantation will help the general public become more aware of organ failure and the huge difference that a transplant can make to so many people.”

European Day for Organ Donation and Transplantation will be celebrated throughout Europe on Saturday, October 12.

For more information visit www.edqm.eu/en/European-day-for-organ-donation .

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Pulmonary Fibrosis diagnosis sometimes difficult

My experience with having my pulmonary fibrosis diagnosed was much quicker than John Morthanos ran into as told in his story here. My family doctor listened to my chest and heard something that alarmed him. He immediately sent me to an emergency clinic for an x-ray and the physician looked at it and declared "you have pulmonary fibrosis and I'm calling your doctor right away". Next came an appointment with a specialist who confirmed the diagnosis. The happy result for me was a lung transplant almost 12 years ago.

Connecticut’s own learn getting the right diagnosis takes effort, patience

John Morthanos 

By Ed Stannard, New Haven Register

John Morthanos is doing fine now. He received a lung transplant to treat his idiopathic pulmonary fibrosis, a rare, fatal, lung disease. He’s back to a normal life.

It took a while to get to that point, though, with doctors referring him to others who really didn’t recognize the disease or its seriousness.

It’s a medical journey with a lesson: Work with your doctor, take an active role in your care, and if you don’t feel you’re getting any better, find a doctor who has the expertise to diagnose and treat your disease.

Right. It’s not as easy as it sounds. But it can be done.

“The primary (doctor) that I’ve been using the last six years kept sending me to different specialists, partly because of my insistence and partly because of his concern that there was a problem that was not being diagnosed,” said Morthanos, 64, of Stratford and a self-employed magazine consultant.

Idiopathic pulmonary fibrosis is similar to other types of PF; idiopathic means the cause is unknown. Diseases like scleroderma and rheumatoid arthritis are risk factors. “There’s some fibrotic lung diseases that can be caused by exposures,” such as to animals, said Dolly Kervitsky, vice president for patient relations and medical affairs for the Pulmonary Fibrosis Foundation in Chicago.

Morthanos’ story actually starts in 2001, when he went to Milford Hospital’s emergency room with what he thought was a heart attack. “They didn’t find anything” but told him, “You’ve got a spot on your lung.” He became increasingly short of breath and dizzy, but his primary physician told him “Oh, don’t worry about it.”

To that, the ER doctor, who had ordered a follow-up, said, “Find a new doctor,” Morthanos said. Which he did. But the referrals from that doctor weren’t the right ones either.

After a while, he was clearing his throat constantly and reflux was suspected.

By 2006, “when I went up a flight of stairs or took a shower I’d become short of breath” and his fingertips would turn white while standing. A pulmonologist told him he was overweight — he’s 6 feet tall and 228 pounds — or allergic to cats, which he and his wife, Paula, have had for 20 years.

His new internist “saw some activity in my chest that concerned him.” A biopsy was done, but only one sample was taken instead of the standard three.

“In 2011, I was really having a hard time breathing … I’m unhappy with what’s going on with the pulmonologist.” He was referred to a cardiologist, who told him his heart was fine. Ironically, it was the heart doc who made the referral for Morthanos’ lung disease that saved him: it was to the Winchester Chest Clinic at Yale-New Haven Hospital, where he met Dr. Erica Herzog and Dr. Mridu Gulati. They accurately diagnosed his condition and told him that if he didn’t get a lung transplant, he’d die within two or three years.

Dr. Erica Herzog 

It got so he couldn’t screw in a wall plate without being out of breath, even on oxygen. Finally, he got the transplant at New York-Presbyterian Hospital.

Ego in the back pocket

Morthanos believes many doctors don’t know enough about uncommon conditions but are unwilling to admit it. “They have to put their egos in their back pocket and say, ‘Let me talk to somebody else,’” he said.

He blames himself too, for not catching on to clues that he had a more serious condition, especially when a doctor confused him with another patient in the waiting room who was in a wheelchair. “In hindsight I should have said, ‘What the hell is going on?’ My ego was too big.”

He’s lucky too. In seminars about treating IPF, “I’m sitting with 200 people, all on oxygen, waiting for a transplant. It’s a waiting game.” Only 68 lung transplants were performed in 2012.

Herzog, director of the Translational Lung Research Program at the Yale School of Medicine, said it’s common for IPF patients not to come in until their disease is advanced, because of “the non-specific nature of the symptoms and the delay in diagnosis. … Shortness of breath and cough — that could be almost anything.”

There is no approved treatment available for IPF either, although gene research at Yale may help determine whether a patient will have a short or long survival time, which could help determine when the patient should undergo a lung transplant.

“John was close to what we called end-stage, meaning his lungs were barely functioning,” she said.

Specialists like those at the Winchester clinic are more likely to diagnose IPF because “all we do is take care of various patients who have scarring of the lung,” at least half of whom have IPF, Herzog said.

She emphasized the patient’s vital role in care. “John was the ideal patient. … When he was diagnosed he became very motivated to stay alive. He worked with us to maximize our ability to support him.

“I think the patient really has to be an advocate for themselves and work with the physician to come up with a treatment plan he can follow.” Paula Morthanos was also a key support, both Herzog and John Morthanos said.

To find a specialist like Herzog and Gulati, the web is invaluable. “The Pulmonary Fibrosis Foundation has designated a network of care centers across the United States,” Herzog said. “These care centers will work closely with the community physician who lives in the patient’s town.

Asking for a second opinion is important too, she said. “In terms of finding a doctor who can give you a second opinion, first ask your own doctor (for names). … That’s actually most of our referrals,” Herzog said.

Kervitsky said, “Our website basically encourages people to look for certain signs … Many people think, ‘I’m breathless; I’m getting older.’ … It usually progresses to the point where people are more breathless with less exertion.”

PFF also lists specialists and other resources, such as guides and booklets that can be downloaded.

Orphan Drug Act is 30

Mary Dunkle, spokeswoman for the National Organization for Rare Disorders, which is based in Danbury, said this year is the 30th anniversary of the Orphan Drug Act and NORD, which supports research into treating rare diseases, those that affect fewer than 250,000 patients.

Since 1983, 447 new treatments have become available and research has begun on 2,907 potential treatments for rare diseases, Dunkle said. In 1983, there were 10.

While IPF now affects more than 250,000 people, it’s still listed on NORD’s website, where there is a report on the disease and resources. In all, NORD supports research into 7,000 rare diseases, so it’s a place to check out if a patient isn’t getting better.

“It’s become increasingly clear to us at NORD over the past year that diagnosis is still a really big issue … for rare diseases,” Dunkle said. “We’ve launched a new website where we’re posting information specifically for physicians and other medical professionals.”

She said patients should keep detailed notes and bring them to their doctor, and be sure the doctor will take time to discuss your symptoms. “You always want to feel like you have a physician who’s willing to listen,” Dunkle said. Not only should patients be advocates for themselves, but spouses should advocate for their loved ones, too.

So, how does Morthanos feel now? He reported, “At this point in time I feel like it’s 1982, except I’m not wearing paisley and polyester pants.”

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Anabel Stenzel, organ transplant advocate, dies

Anabel Stenzel battled cystic fibrosis. Photo: Lea Suzuki, The Chronicle

It's with a heavy heart that I post this announcement and my thoughts and condolences go to Ana's family and friends as we remember the amazing contribution she made to organ and tissue donation awareness. I had the pleasure of working with Ana at a conference in San Francisco and was impressed with her upbeat enthusiasm and zest for life in spite of going through the ordeal of two double-lung transplants. Merv.

By Kathryn Roethel, SFgate.com

Anabel Stenzel, a Bay Area woman with cystic fibrosis who received two double lung transplants and authored a memoir with her twin sister, also a double lung transplant recipient, that inspired a documentary film, ("The Power of Two") died Sept. 22 at her Redwood City home of cancer. She was 41.

When Ms. Stenzel and her sister, Isabel Stenzel Byrnes, were born with cystic fibrosis in 1972, doctors said they probably would not reach their 10th birthdays. Over the next four decades, Ms. Stenzel graduated from Stanford, earned a master's degree from Cal and married. She worked as a genetic counselor at Lucile Packard Children's Hospital for 16 years, was a competitive swimmer and runner who won more than 20 medals in six national transplant Olympic-like games and was an international advocate of organ donation.

Ms. Stenzel was born in Los Angeles to immigrant parents who called her Ana and her sister Isa. The twins shared everything, from hospital rooms throughout their childhood, to a dorm room at Stanford, to an apartment in Japan, where they both taught English after graduating Stanford in 1994.

TEDx talk in 2013

In May 2013, in what was one of Ms. Stenzel's last public appearances, the twins gave a TEDx talk in Menlo Park about their experience with cystic fibrosis, a disease that can lead to lung failure.

"What has really gotten us this far? I think it's our love," said Stenzel Byrnes, who is generally healthy as she approaches the 10th anniversary in February of her own lung transplant. "Illness can be a very lonely experience, and we feel very privileged that we have never, ever felt alone."

Ms. Stenzel received two lifesaving lung transplants, the first in 2000 and the rare second one after her body rejected her donor lungs in 2007.

"I want to encourage donor families to know that somebody out there is living and enjoying life and thinking of them on a moment-by-moment basis," Ms. Stenzel said in a 2010 San Francisco Chronicle interview. "I think of my donor family every single day."

In 2007, Ms. Stenzel and her sister published their memoirs, "The Power of Two." The book became a documentary directed by Marc Smolowitz.

Hawaii proposal

A few months before her second lung transplant, Ms. Stenzel met Trent Wallace through a dating website. Wallace was by Ms. Stenzel's side during transplant recovery and became attracted to "how strong she was." He proposed on a trip to Hawaii, and the couple wed in June 2010. The documentary film closes with scenes from their wedding.

Shortly after the film's fall 2011 premiere, Ms. Stenzel was diagnosed with small bowel cancer - a common complication for middle-aged cystic fibrosis patients.

While she was undergoing chemotherapy and clinical trials, Ms. Stenzel was the Northern California team manager for the 2012 U.S. Transplant Games and won gold medals in swimming and running. She also was a board member of Cystic Fibrosis Research Inc., co-founded an exercise boot camp for transplant recipients in the Bay Area and volunteered for several other nonprofits.

Stenzel Byrnes said her sister's donated lungs were "perfect, right until the end." And although cancer meant she could not donate organs or most tissues, the life-long advocate donated her corneas.

New edition

In the spring of 2014, publishers plan to issue a second edition of the twins' book, this time including a 50-page afterword they wrote together before Ms. Stenzel's death. "She wrote the conclusion to her life," Stenzel Byrnes said. "And what an extraordinary life that she has lived - that we have lived."

In addition to her sister and her husband, Ms. Stenzel is survived by her parents, Hatsuko and Reiner Stenzel; and her brother, Ryuta Stenzel.

A memorial service will take place at 2 p.m. Oct. 26 in Portola Valley at Valley Presbyterian Church, 945 Portola Road. Gifts in Stenzel's memory may be made to a cystic fibrosis oncology research fund at http://makeagift.ucsf.edu. The family also welcomes donations to Cystic Fibrosis Research Inc. and California Transplant Donor Network.

Kathryn Roethel is a freelance writer. E-mail: datebookletters@sfchronicle.com

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12 Living kidney donors to walk alongside Donate Life float in 2014 Rose Parade

Walkers Reinforce the Need for Living Donation to Meet Growing Transplant Waiting List

LOS ANGELES, Calif. – Sept. 30, 2013 – Twelve generous yet ordinary people who donated a kidney so that others could live have been selected to walk alongside the 11th annual Donate Life float in the 2014 Rose Parade, themed "Light Up the World." The living donors will walk the five-mile parade route to underscore the possibility of donating a life-saving organ while alive as well as demonstrate the vitality of people who have done so.

"As we begin our second decade of Rose Parade participation, we felt it important to honor the generosity of living donors, who are beacons of hope to people suffering from kidney failure," stated Bryan Stewart, chairman of the Donate Life Rose Parade Float Committee and vice president of communications at OneLegacy, the non-profit organ, eye and tissue recovery organization serving the greater Los Angeles area.

Each year, about one-third of the nearly 17,000 kidney transplants nationwide involve living donors. The recipients are mostly family and close friends of the donors, but increasingly often altruistic donors step forward to donate to a stranger, with the potential to start a chain of kidney transplants that can potentially free dozens of kidney patients from dialysis. Because the conditions allowing deceased donation to occur are extremely rare, increasing living donation is essential to helping the nearly 100,000 individuals currently awaiting a kidney transplant. Living donors also account for about four percent of liver transplants.

Five of the walkers will be just steps from their recipients riding on the Donate Life float.Kathleen and Justin Hostert (Fullerton, Calif.) both gave kidneys to float rider Craig Hostert, their husband and father, respectively. Kathleen's donation was 14 years ago; Justin's was last December. The family of four leads a 60-person committee to produce the Donate Life Run/Walk each April at Cal State Fullerton, the nation's largest donation-themed event.

Michael Cervantes (Chino, Calif.) will walk next to his brother and recipient, rider John Cervantes, whose transplant brought an end to 30 years of kidney-related health challenges and allowed him to return to his 17-year career as a police officer.

Lakishia White (Fresno, Calif.) and Jessica Jurado (Sacramento, Calif.) will walk alongside Lakishia's husband, rider JePahl White, who received his second kidney from Jessica via a paired exchange program. Jessica gave her kidney to JePahl, while LaKishia gave her kidney to a recipient in Pennsylvania. In turn, Jessica's mother received a kidney from another participant in the exchange.

Two walkers were inspired to donate by seeing stories about donation. 

Phillip Palmer(West Monroe, La.), news anchor at ABC7 Los Angeles, read a story about then-NBA star Sean Elliot, who received a kidney from a living donor. The concept of living donation was entirely new to him, but he knew he wanted to give to someone, some day. Years later, his co-worker and friend Dale Davis sickened quickly from kidney failure, and Phillip stepped up to donate his kidney. He encourages people to talk about donation. "You never know how that conversation will end or the lives you might save," he declared.

Kelly Wright, DVM (Newport Beach, Calif.) was inspired by seeing the Donate Life float in the 2013 Rose Parade. She resolved then to give one of her kidneys to a stranger, and through Facebook met a father of two in Massachusetts who was spending 12 hours a week on dialysis. Three months later, the transplant was a success. "I will never have a bigger accomplishment in my life than having one of my kidneys working inside of another human being who may have died without it," she reflected. "Living donation is a blessing for both donor and recipient."

Karen Willis (Northridge, Calif.) wanted to help a complete stranger in a big way; the idea of donating a kidney came very quickly. She liked the idea of helping many people in a kidney chain with her one altruistic donation. Through her participation in "The Chain," a documentary about the series of transplants she initiated, Karen was able to meet two other donors and two recipients, including her own. "I gave three people back their health, their dreams, and their ability to have a quality life with their families," Karen said.

Another who gave to a stranger was Teresa "Terie" Cota (Santa Maria, Calif.), who wanted to help someone else when she was not able to help her brother-in-law, Chris, who succumbed before the transplant could occur. Teri believed that her kidney could still help someone else through a non-directed donation. On the one-year anniversary of Chris's death, Terie received the news that a recipient had been found. "The decision was simple," she said. "I had been given the gift of health, and I wanted to share it. I believe the opportunities to make choices like these are the best part of being human."

Through his longtime career in tissue banking, Kevin Lucien Noyes (North Branch, Minn.) has long understood the importance of and need for organ and tissue donation. In March 2011, he learned that Marlin, his high school math teacher and father of a lifelong friend, needed a kidney transplant. Drawing on his conviction to do the right thing, Kevin underwent testing, lost weight to meet the transplant center's requirements, and restored life for Marlin. Kevin hopes his story inspires others to explore the opportunity for themselves.

Kathy Vochoska (Bakersfield, CA) watched as her college son Chris went into sudden kidney failure due to Berger's Disease. With Chris on dialysis, the need for a kidney was imminent, especially from a living donor in the family. Kathy found she could be his match, and she donated her kidney to him at the end of March 2011, and subsequently became a Donate Life Ambassador. "Although I hate that my son got sick, the silver lining of our journey is that I am now involved with the most compassionate and inspiring group of people I have ever met," she said. "My life has been forever changed."

J

eff E. Carter, Jr. (Getzville, NY) also had a son, Jeff III ("Jeffrey"), who developed kidney disease. Four years after being diagnosed with kidney disease, 18-year-old Jeffrey's kidneys completely shut down, followed by three years of dialysis and numerous hospitalizations, surgeries, and near-death occasions. Once Jeffrey was cleared for a kidney transplant, Jeff did not hesitate to donate. Tragically, however, nine years after he donated his kidney, Jeff's youngest daughter Rebekah died. "Rebekah's organs and tissues were donated, and we know that her life continues in others," said Jeff.

The 2014 Donate Life Rose Parade Float entry features a festival of lanterns illuminating 30 riders and 12 living organ donors walking alongside the entire five-mile route. The float's five enormous lanterns are adorned with 78 memorial floragraph portraits of deceased donors whose legacies of life shine brightly. The riders are seated throughout a dedication garden filled with thousands of roses bearing personal messages of love, hope and remembrance.

Since its debut on New Year's Day 2004, the Donate Life Rose Parade float has become the world's most visible campaign to inspire people to become organ, eye, and tissue donors. The campaign began as an idea expressed in a letter by lung recipient Gary Foxen of Orange, Calif., who wanted to show gratitude to donors who make life-saving transplants possible. Now, in addition to the 40 million viewers who view theRose Parade in the stands and on TV, hundreds of events are held in cities and towns around the country to put the finishing touches on floragraph portraits and present dedicated roses to donor families and community partners that play a role in making donation possible.

The 2014 Donate Life float is built by Phoenix Decorating Company from a design by Dave Pittman and is coordinated by Los Angeles-based OneLegacy, the world's largest organ, eye and tissue recovery organization. Each year, the Donate Life float campaign is supported by more than 140 official sponsors from coast to coast, including organ, eye and tissue recovery organizations, tissue processors, hospitals, transplant centers, state donor registries, funeral homes, donor family foundations and affiliated organizations. 

Joining OneLegacy as top-level benefactors are:

American Association of Tissue Banks (AATB), which is dedicated to ensuring that human tissues intended for transplantation are safe and free of infectious disease, of uniform high quality, and available in quantities sufficient to meet national needs;

Dignity Memorial^® network, North America's largest network of funeral, cremation and cemetery service providers;

Donate Life America, a nonprofit alliance of national organizations and state teams across the United States committed to increasing organ, eye and tissue donation;

Donate Life Run/Walk Committee, the Orange County-based producer of the nation's largest donation-themed 5K fundraising event;

Josiah's House, a Tennessee-based nonprofit ministering to boys in the Dominican Republic in honor of Josiah Berger;

The Order of St. Lazarus, an international community of Christian men and women devoted to ecumenical spirituality, worldwide charity and chivalric tradition;

SightLife, a nonprofit eye bank focused on eliminating corneal blindness in the United States and worldwide; and

TBI/Tissue Banks International, a nonprofit network of eye and tissue banks and the largest provider of ocular tissue in the world.

      

The Donate Life Rose Parade Float's family of sponsors urges viewers to help make dreams come true for more than one million people in need of life-saving and healing organ, tissue and cornea transplants. Join America's 113 million registered donors so that everyone whose life and livelihood depends on a transplant can have one. Sign up when renewing your driver's license or by visitingwww.DonateLifeAmerica.org. Further information about the Donate Life float can be found at www.donatelifefloat.org.

The Pasadena Tournament of Roses is a volunteer organization that annually hosts the Rose Parade^® presented by Honda, Rose Bowl Game^® presented by VIZIO and various associated events. The 125th Rose Parade presented by Honda, themed "Dreams Come True," will take place Wednesday, Jan. 1, 2014, at 8 a.m. (PST) featuring majestic floral floats, high-stepping equestrian units and spirited marching bands. Following the parade, the 100th Rose Bowl Game presented by VIZIO will kick off at2:10 p.m. and feature an exciting match-up between two of the top collegiate football teams in the nation. For additional information on the Tournament of Roses please visit the official website at www.tournamentofroses.com.

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