Archive for August, 2009

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“Why I gave the gift of life to someone I never met”

Thursday, August 27th, 2009

http://www.thisisplymouth.co.uk/features/GAVE-GIFT-LIFE-MET/article-1248387-detail/article.html

A PLYMOUTH woman who anonymously donated her kidney has revealed why she chose to give the gift of life to a complete stranger.

Julie Saunders from West Park went through six months of tests, both physical and mental, and a gruelling operation last year – but says she has no regrets and feels healthier than ever.

She now wants to let the public know how important it is to sign up to the organ donation register, which allows doctors to help others by using your organs after you die.

“Giving up my kidney was meant to be and, although it was painful, I have no regrets,” said the 43 year-old.

“Everyone has the ability to give the gift of life and I wanted to be alive when my body is healthy and can fully help others.”

Julie decided to give the organ after an eye disease, Kerataconus, meant she needed a cornea transplant to help save her eye sight.

Her transplant operation in 2000 left her with 12 stitches in her eye ball which remained for three years while her body ‘took’ to the new tissue. Her eyesight has since rapidly improved.

“I was so grateful to receive my cornea,” she said.

“People say the eyes are the windows to your soul and going through the operation made me realise that sight is everything.”

She added: “I love art and photography and get excited by seeing the sunset and looking at clouds.”

“Since that operation I couldn’t stop thinking about donating something of mine,” she said.

Altruistic donation is one of the new types of donation that the Human Tissue Authority has allowed since 2006 and involves a living person, who has never met the possible recipient, becoming a donor.

Julie says her experience helped her make a decision but there was another factor.

After seeing someone very close to her go through an illness for many years, she felt helpless not being able to do anything.

“I know how it feels to be at mercy without any control over the health of your body,” she said.

“I finally decided that I had to do something positive. I can’t help him but I thought I could at least help save someone else.

“Hopefully if there’s any karma in the world, it might come back to help the person close to me.”

She added: “Besides, I don’t view it as a sacrifice, I view it as a gift.”

“I feel so passionately about getting people onto the donor register and families talking about their wishes before they die so that it’s not a taboo subject anymore.”

“All life is precious. The fact that I wasn’t related to the person doesn’t make their life any less valuable.”

The advantages of a living donation are extra time to plan the procedure and opportunities to test people and find the perfect match.

When patients receive organs from someone who’s died doctors have just two hours to transfer the organs.

Julie went through months of tests, scans and psychological assessment to ensure she was ready. She said the process was so thorough and gave her and her family proper time to get used to the idea and answer any questions.

She said: “I was so well informed and I never felt pressured at any point and they always made it clear that I could opt out if I wanted to.”

Julie had many burning issues to consider before making a decision on the donation. One of these was that she had no control over who her kidney ended up with.

“It could have been given to a murderer in prison and my family wondered about that,” she said.

“But I didn’t want to judge. I figure that if someone had got to the stage where they needed a kidney from someone, it may help them to turn their lives around and do something positive.”

She also had to consider how she’d feel if her remaining kidney started to fail or if her family members needed a kidney from her.

“I have no children to worry about and I have a huge family including five brothers and sisters. I know if something were to happen, that one of them would be able to help, but you can’t worry about the what-ifs.”

After deciding she wanted to go ahead with the operation in January 2008, she finally had the all-clear by September.

She said: “The day I was told I could do it, someone I knew died. It was as if I was meant to do it. It’s not for everyone but for me it was something I had to do. I felt so excited!”

She had her operation in October and has never looked back.

“The operation turned my life around and made me look at things in a new way,” she said.

“It made me appreciate what I’ve got in my family and it forced me not put things off anymore. It’s also let me realise how important my body is and how to take care of it and keep healthy, I’ve never felt better.”

Dr Peter Rowe, Consultant Nephrologist at Plymouth Hospitals NHS Trust, said: “The donors I have come across are genuinely altruistic, they decide that, on balance, donating is unlikely to do them harm but will transform someone else’s life.”

“The Independent Assessment process makes sure that the donor understands the risks involved. We only carry out this type of procedure if we are sure it is as safe as possible for the donor.”

Julie added: “I know my kidney is perfectly healthy after the thorough going over I had, so it’s unlikely to fail. If it did I would know it was meant to be and hopefully there might be someone around to donate me a kidney!” she joked.

She added: “There’s nothing to say you can’t live a healthy life without a kidney, I say the extra one is a spare!

“But seriously, my aunt lost a kidney in her 30s and is now in her 70s and doing fine”

Out-of-the-blue she was contacted through the transplant unit and told the person who received the kidney had sent her a card.

She said: “It said “you’ve given me back my life”. This made me cry, Julie said. “I keep the card on the side all the time to remind me of why it was a good thing to do.”

“I didn’t do it to feel good about myself but there’s no doubt that you feel a huge amount of satisfaction and contentment from helping to improve someone’s life. It has given me the impieties to take charge of my own life and live it to the full and appreciate everything that I’ve got.”

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Niagara Falls Native receives kidney from a near stranger

Thursday, August 27th, 2009

http://www.niagara-gazette.com/features/local_story_235110456.html

A GIFT FOR SAVILLA: Niagara Falls Native receives kidney from a near stranger
By Michele DeLuca

To him it was just a kidney. To her, it was a life-saving offer from someone she hardly knew. It was such an outrageous gift that she could hardly even consider it. As she tells it, death already had begun to enter her body last year when she decided to accept a kidney from a man she had never met. Now his kidney is in her body, keeping her alive and saving her from hours of painful dialysis and illness.

Because of a 44-year-old man named Stephen McClelland, Niagara Falls native Savilla Kress can go back to her life in Vancouver, modeling, painting and designing clothes.

As for McClelland, to hear him tell it, it was really nothing.

“It’s not that big of a deal,” he said during a phone interview from Las Vegas where he is singing in a musical review at Bally’s.

The two had been conversing on a networking site for models when he learned that Kress needed a kidney. It seemed a coincidence when they learned they shared the same blood type — type O — making them a perfect match for organ exchange.

At that time Savilla, who now lives in Vancouver and also has been working as a costume designer for a variety of sci-fi television series including “Stargate,” “Dark Angel” and “Stargate Atlantis.”

Although she had been diagnosed with kidney disease when she was 21, she had been living a relatively healthy life until her kidneys began to fail a couple of years ago.

“I kept thinking I can beat this,” she said. “I also thought if it’s my time, it’s my time.”Still, she tried every option, including herbs from a Chinese doctor, but nothing worked and her kidney function dropped to about 15 percent.

“The strange thing about kidney failure is you don’t look sick,” she said. “I even had a modeling job when my kidney function was down to 9 percent. The pictures came out great.”

Her nephrologist was concerned she was in denial about the illness. He told her, “I don’t think you realize this, but you are going to die and it’s going to be in weeks.”

Then, pretty quickly, her body began to respond to the loss of kidney function. At 9 percent function, her skin started turning yellow, her ankles swelled and she began to have a hard time breathing. Her body was filling with toxins that are typically flushed out by the kidneys.

“I felt death enter my body,” she said.

Her boyfriend insisted she begin dialysis, but she hadn’t even told her family how sick she was. She knew her brother and sister would insist on testing to see if they could give her one of their kidneys. She simply didn’t want either of them to make that big of a sacrifice for her.

“In my mind, I thought I would rather die than take one of their kidneys,” she said. But then, Savilla saw her sister, Helen’s, heartbreak after they learned her kidney would not be a match for Savilla.

“She locked herself in the bathroom for 45 minutes and cried,” Savilla recalled. “She was devastated she couldn’t help me.

At the same time her brother Frank, in Maryland, was trying to get tested, but he was denied insurance to pay for the procedure. Then an area church held a fundraiser to pay for the tests, but Frank also was not a match for Savilla.

She began self-dialysis, a painful, involved process that forced her to hook up to machines all night long. She even posted video on YouTube where more than 4,000 viewers have watched the unglamorous and ungainly 10-minute procedure required when flushing one’s body with 17.5 liters of fluid each night.

It was when Savilla changed her profile on the modeling Web site, saying she couldn’t take on any new jobs because of her illness, that McClelland contacted her and offered his kidney.

“Somebody saved my life 20 years ago and I never got to thank them,” McClelland told her. He had been in a car accident and a stranger helped him escape from the wreckage but disappeared afterward. McClelland felt that giving his kidney to Savilla was a way to pay the good deed forward.

McClelland, who appears very low-key about the gift, also held a second memory of being saved. He was swimming in the ocean as a young man and was caught in a riptide. He remembers struggling until he could swim no more and then, just as he gave in to his fate, he remembers a hand pushing him out of the riptide and enabling him to save him own life. He believes that it may have been the help of an angel. But he doesn’t make a big deal out of that incident either.

He simply wanted to offer his kidney because, “if someone was burning in a fire or drowning in a lake, I would try to save them.” To him, Savilla’s case was exactly like that.

Pretty quickly Savilla’s family and friends set up a foundation called Savilla’s Hope, which was set up to raise money so that McClelland would have something to live on during the eight weeks he was off work. Friends responded generously. The operation occurred in January when Savilla and Stephen met face-to-face for the first time.

Even then, the gift he was giving her was almost too much for her to accept.

“I almost backed out but, at the time, I didn’t have any options” Savilla recalled. “He had to convince me. He had to do a lot of convincing.”

“It was so hard to accept a gift like that. I can’t even accept $5 from somebody,” she said recently during a visit with her mother, also named Savilla Kress, at her childhood home near Hyde Park.

With no options, Savilla accepted the gift. The operation in Vancouver went smoothly and was paid for by Savilla’s Canadian health insurance. The event was covered by many media outlets, including a segment on the national news, which was also posted on YouTube. Stephen, with his wife at his side, handled it all pretty easily. Savilla felt better immediately after the operation.

“You have no idea of how sick you are until you feel healthy,” she said. “Everything was working.”

There have been ups and downs since for Savilla. These include migraine headaches and stomach upsets while the anti-rejection drugs were adjusted. But, she’s feeling pretty well these days and has an uncanny taste for chocolate ice cream. “I never liked ice cream before. It’s his favorite thing.”

She is back to modeling again and even did a series of lingerie photos that show her scar. The photographer thought it was natural and beautiful.

And her mother looked back on the events that changed her daughter’s life, and was simply amazed at the kindness so many people showed to her family.

“So many happy things have happened,” as a result of the gift, her mother said. She recalled donations pouring in from neighbors and strangers, helping the family in too many ways to name.

Savilla’s experience seems to prove that many people will help others in any way they can, but stories like hers are becoming more common, according to a spokesperson for the National Kidney Foundation of Western New York.

Anne McCooey, the executive director, said that more people are getting proactive about donating and receiving kidneys and other organs through Internet connections.

A Web site has been created in Western New York so that those in need of a kidney can connect with those who might like to donate. The 3-year-old site is called kidneyconnection.org, McCooey said.

“We’ve already had our fifth successful match from it, which is huge,” she said. “Considering there are over 400 people in Western New York sitting on a waiting list and the average wait time for a donor is four to five years.”

McCooey added that while healthy people live quite well on only one kidney, the process to donate is so stringent that by the time a prospective donor gets through the physicals “you will know you are probably one of the best physical specimens walking around on the face of the Earth.”

McCooey also said people like Stephen McClelland are heroes, but McClelland won’t even consider wearing that title.

“I just have a new sister that I talk to all the time,” he said of Savilla. “That’s all.”

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Woman donates kidney to stranger

Thursday, August 27th, 2009

http://ydr.inyork.com/ci_13196227
By TERESA ANN BOECKEL

Shari Perkins of York Township will undergo surgery at a Texas hospital this morning to donate one of her kidneys to save the life of a man she’s never known.

“I can’t think of anything better to do than save someone’s life or enhance it,” Perkins said as she was prepared for surgery Monday evening.

Mario Rene Lozano, a retired police officer from Missouri City, Texas, will receive Perkins’ kidney at The Methodist Hospital in Houston. If all goes well, he could be released by the end of the week.

“Shari has been my lifesaver, my guardian angel,” he said.

Lozano has suffered from diabetes for about 30 years, and he’s been on kidney dialysis for roughly nine months. His two daughters didn’t qualify as kidney donor candidates.

So, the family took its plea for help to a Web site called “Wish Upon a Hero” at www.wishuponahero.com. His daughter, Kari Quinn, wrote about how her father has helped others, and that the family was now looking for a living donor with Type O-negative blood.

Perkins, who has granted 245 wishes through the Web site, such as money for groceries and sending birthday cards to children, responded to the family’s plea within 30 minutes. Her father, Marlin Knaub, helped at least six people through organ donation when he died in 1996, and that inspired her to become a living donor.

If she gives one of her kidneys, it will free up a cadaver kidney for someone else in need, Perkins said.

She also hopes to inspire others to become living donors. “It’s not as difficult as people think it is,” she said.

Perkins said she saw similarities between Lozano and her dad. For example, her father was 54-years-old when he died, and Lozano is 55. Her father didn’t get to see two of his grandchildren. Lozano has young grandchildren.

“I knew it has to be the right thing to do,” she said.

Lozano’s fiancée, Linda Mares, and his daughters kept Perkins’ offer a secret until tests proved that her kidney would be a match.

Then, Perkins joined the family at a restaurant one day to share the news. Lozano looked at her in disbelief, Mares recalled.

“I was blessed by this woman,” he said. “I could not believe it. She was there for my rescue.”

Lozano said he hopes the new kidney will give him strength to help him recover from several strokes that has left his right side paralyzed.

Both patients waited Monday night for the upcoming surgery.

“It’s the most amazing thing I’ve ever done,” Perkins said.

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Kidneys rocked his world

Tuesday, August 25th, 2009

Charles G. Anderson Sr. Special to the Reporter-News
Monday, August 24, 2009

Chris Komorowski, 27, of Abilene, never dreamed that his whole world would change shortly after Christmas in 2008.

He had not been feeling well, had gained weight, and there was a weird taste in his mouth. Komorowski had always been healthy and active, so he did not think anything was wrong with him.

He had graduated from Abilene High School in 2000 and went to Abilene Christian University for nearly three years. He was active in gymnastics at AHS and at ACU where he was member of the famed Flying Cats gymnastic demonstration team.

After leaving college, he enrolled at Texas State Technical College where he studied digital imaging and then he went to work for a local company.

Chris’s mother, Beth, said that Chris had a sore in his mouth, and a local dentist had said he needed to see a doctor.

“We went to a rural hospital where I grew up,” she said.

“You need to go directly to the hospital, and you will probably start dialysis,” he was told after a series of tests.

He was in the hospital by 5 p.m. that day.

“A nurse came into the room and told us that Chris would start dialysis,” Beth said. “I told her she had the wrong room. I could not believe it.”

He spent four days in the hospital, and he had tests run to see if they could find what had caused his kidney problem.

“My kidneys were barely functioning,” Chris said. “I thought everything was fine, but the kidneys were not filtering the impurities out of my system.”

His dad, Ted, was also at a loss on what was happening to Chris. One day they thought Chris was in good health, and the next day he was taking dialysis.

“No one could tell us why his kidneys were failing,” Ted said.

“I was shocked and scared,” Chris said. “After a while, I decided that this had happened, and I needed to deal with it.”

He spends several hours a week hooked up to dialysis. His left arm has a big blue mark on it where he has been stuck numerous times with a needle.

“I am all tied up for about four hours,” Chris said half jokingly in speaking of his dialysis. “I read, watch TV or take a nap.”

Chris got an appointment at Scott and White hospital in Temple in July, and the doctors urged him to consider a kidney transplant. Other tests were run, and the doctors told Chris they just did not know what caused his condition. The tests showed that he did not have diabetes, and no one in his immediate family had any problem similar to what he had encountered.

“You may be a good candidate for a kidney transplant,” the doctors told him. “We are running more tests to see if you are well enough to take another kidney.”

His mother, father and a brother are the best sources for a match, Chris said. “If I am approved, they will run tests to see if they match.”

All three have agreed to be the donor if they match.

When his friends heard about Chris’s problem, some volunteered to help.

“Hey man, you need a kidney,” a friend told him. “I’ve got two.”

“It would all depend on whether there is a match,” Chris said.

Meanwhile, he is waiting to hear from the doctors in Temple and expects a letter any day.

If he is approved and no matches are found in his family or with his friends, Chris will go on a waiting list.

“If I get a kidney from a live donor, it will last longer,” he said. “If it is from a cadaver, they do not last as long.”

Chris explained that in dialysis, the blood is taken out of the body and cleaned and then put back into his body.

“I get changed out,” he said with big grin.

Chris weighed about 170 pounds when he was in college with the Flying Cats. By the time he started dialysis, he weighed 310 pounds but is back to 270 now.

“I found out a weight gain was one of the symptoms of my kidney problem,” he said.

He has taken some hard knocks because of his illness. Not only has he gained weight, but he no longer has a job.

“I plan to help out more around the house,” Chris said. “I still go out with friends, but even that has changed some.” He said they usually play games on the computer or do something at home as he is tied so closely to the dialysis treatments.

Chris has to be careful with his diet. He said there are some foods that would hinder his condition even now.

“If I get a transplant, I will always be taking certain pills and sticking to a diet,” Chris said.

“I had plans for an apartment of my own,” Chris said. “When this came up, all my plans had to be changed.”

“We are trying to go right on with life,” Ted said.

Chris lacks just a couple of courses at TSTC, and he has nearly three years toward his college degree.

Asked what would happen if the doctors said he is not a candidate for a kidney, Chris said he would just go ahead with life and deal with it.

“I hope to get a new kidney, finish my degree and go back to work,” he said.

Then Chris glanced down at the scars and blue marks running up and down his arm.

“I hope to go back to the same company to work,” he said. “If I can’t go back there, I hope to find another job somewhere in Abilene.”

Meanwhile, Chris is waiting for a letter from Temple.

“Whatever comes, I will face it,” he stated.

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Ariz. woman finds taxi driver is a kidney match

Tuesday, August 25th, 2009

PHOENIX – Rita Van Loenen had no idea that a trip in Thomas Chappell’s taxi cab could end up being the ride that saves her life.

“There are better odds of getting struck by lightning,” Van Loenen said. “A random taxi driver offering to give me his kidney and all these pieces match. There has to be something behind this. How can this be?”

Chappell, who has been driving Van Loenen to dialysis appointments, shocked the Gilbert, Ariz., woman a month ago by offering to donate his kidney. But even more shocking to her was that doctors found they had the same blood type, that they were compatible.

“He calls me all excited. If we were a closer match, we would’ve been siblings. I was ready to fall off the floor,” Van Loenen said.

The Phoenix taxi driver said he was a man of faith and that a higher power wanted him to step in.

“By then, me and the good Lord already had a talk. He said ‘Tom, you go give her one. It will work,” Chappell said.

Diagnosed with kidney disease last year, Van Loenen, an instructor in special-education methods, began feeling ill and experiencing water retention in her legs. She went to see a doctor and was diagnosed with kidney disease. With kidney failure setting in, friends and family were tested but there was no match.

In February, she received her cousin’s kidney but that transplant failed. One day, Van Loenen, 63, found herself telling Chappell, 56, about how her son was now going to get tested. Chappell decided to add his name to the list.

“I said ‘Rita, your son’s a whole lot younger than me. He’s got a lot more years. I’m gonna go down and go through the process and see if it will work.’ I don’t think she really believed I was going to.”

The gesture evoked tears of gratitude from Loenen but she was still skeptical.

“A little bit in my heart I didn’t believe it. He said ‘give me the number’ and I have transplant number at Mayo (Clinic in Scottsdale) memorized.”

The two first met more than three months ago. It wasn’t an auspicious beginning.

Chappell was half an hour late picking Van Loenen up for a dialysis appointment.

“When I got there she was not happy,” Chappell said. “And I can understand it now. She’s sick and all these things she goes through … The next day, it just so happens I got her again.”

Since then he has — and he insists it is by happenstance — been her taxi driver three to four times a month. For the last month, Chappell has started undergoing the arduous process of donor screening, undergoing numerous tests and exams. But none of it has brought second thoughts.

“This has put a whole new kind of lift in my boots. I never knew what it felt like to give somebody life and that’s what I’m doing,” Chappell said.

Van Loenen said Chappell never asked for any compensation. She still can’t quite believe his level of commitment.

“I’ve never known anybody so enthusiastic to get a body part removed,” Van Loenen said.

After the transplant, which hasn’t been scheduled yet, Chappell will need to tread carefully. He will have to rest between four and six weeks but his work has promised to cover his lost wages.

“I’ve had drivers do some pretty incredibly amazing things for no charge. But this is just over the top,” said Jim Hickey, national sales and marketing director for the company that owns VIP Taxi. “We’re just so proud of him.”

Van Loenen said that, thanks to Chappell, she can actually make plans for the future.

“Whenever I tell my friends or my family, they just find it so incredible,” Van Loenen said. “They do call him an angel. My friend says there’s angels everywhere. That’s the right way to capture it.”

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A stranger’s kindness

Saturday, August 22nd, 2009

Published: August 19, 2009 01:52 pm y

Julie Bacher gave a piece of herself to someone who needed it more
By Lauren Clason/Times Sentinel intern

One day in September, Julie Bacher had a revelation.

At a routine weekly meeting in the F.C. Tucker office where she works, Bacher was listening to someone speak on an upcoming United Way campaign.

“If you can’t give of your resources, give of yourself,” the speaker said.

The very next speaker was from the Indiana Organ Procurement Organization (IOPO). It was then that it hit Bacher. One of her purposes in life was to donate a kidney.

“A voice louder than anything I’ve ever heard in my entire life said, ‘This is what you’re supposed to do,’” Bacher said.

Bacher’s own mother died of kidney disease after being on dialysis for several years, so the mission was partly a personal one. Bacher’s mother had been too old and frail for a transplant from Bacher or her siblings.

“I suppose the seed was planted back then,” Bacher said.

After getting all the paperwork and legality issues straightened out, Bacher embarked on a six-month long journey of every test imaginable. Bacher underwent everything from a mammography, a psychological evaluation and a colonoscopy to chest X-rays and “millions of blood tests.”

But Bacher had already undergone a few major surgeries for personal reasons, so the extensive tests and physical strains didn’t faze her.

“I was really prepared for the physical part, the pain and the recovery period,” she said. “What i wasn’t prepared for was the emotion that came with meeting the recipient.”

The recipient was Indianapolis resident Linda Donaldson, who had been waiting for a kidney transplant for five years. Bacher was the “perfect negative” to Donaldson, meaning her kidney could counteract the high antigens in Donaldson’s blood caused by high blood pressure. Bacher wasn’t surprised by the match.

“I knew going in there that there was one person I was supposed to be doing this for,” she said.

Donaldson, however, was blindsided when Zionsville resident Dr. Tim Taber, the chief of transplant nephrology at Indiana University Hospital in Indianapolis, told her they had found a donor.

“I was shocked,” she said. “I told Dr. Taber, ‘You’re kidding me.’ He said, ‘We actually just got someone who walked into IU and wants to give a kidney.’”

Although Bacher had up until being put under to change her mind, once she had made the commitment, she never looked back. In fact, the intensity of the process only proved how important this mission was to her. She even lost 20 pounds to meet the doctors’ standards.

“This whole time I could never lose weight for myself, but I thought, if I’m serious about this, I guess I can,” Bacher said.

IOPO estimates that one in four transplants are done with a living donor, although very few of those are good samaritan donors, where the donor has no connection to the recipient. Donaldson said her transplant was only the second good samaritan donation done at IU Hospital in the past five years.

As a result, the hospital wasn’t quite sure how to handle Bacher’s and Donaldson’s meeting. Initially the two weren’t allowed to meet, but that changed when Donaldson sent Bacher a card through the hospital staff the morning of the surgery. Two days later, the staff wheeled Bacher into Donaldson’s hospital room.

“The minute I met her I had Kleenex ready on my lap,” Bacher said. “But she just started shouting, ‘There she is! There’s my angel! Thank you so much for what you’ve done!”

Donaldson remembers the meeting the same way.

“I was ecstatic. I could hardly move or anything to hug her. I don’t know, it was just like we had known each other forever, to be quite honest,” she said. “We’re family members now. I have a part of her. I think we always will be. She’s gone through an awful lot for this. I owe her my life,” Donaldson added.

Donaldson even showed Bacher a bag of urine to illustrate how successful the surgery went.

“When you start sharing urine talk, I think you’re going to be lifelong friends,” Bacher said, laughing.

The two still communicate almost daily, although their busy schedules have so far prevented them from meeting up again. Bacher was back in the office after two weeks, and Donaldson has been doing well in follow-up doctor appointments.

Although uncommon, donating a kidney wasn’t too unordinary for Bacher, who has donated blood and platelets regularly, and who has been in the bone marrow registry for 15 years.

The prospect of future kidney problems didn’t stop Bacher either, who said she has five siblings plus her children to rely on in the event she would need a transplant. If they couldn’t use her family members, Bacher would be moved closer to the top of the waiting list since she was a voluntary donor.

“It’s too bad that more people don’t do what Julie did,” Donaldson said. “You can live perfectly fine with just one kidney. So many people would be saved.”

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The chain of life: Kidney exchange pools doctors, donors, recipients

Tuesday, August 11th, 2009

http://www.sltrib.com/news/ci_13032478
By Matt Canham

Shaking off the anesthetic, Jordan Brough sat up in his hospital bed. He gathered himself, cleared his throat and tested his voice. Then he picked up the phone and dialed.

“Hey Mom, guess what I did today?”

What he did was donate a kidney to a complete stranger, kicking off a massive 14-person exchange involving a novel new medical procedure.

What he did was answer the prayers of a 61-year-old great-grandmother who had been tethered to a dialysis machine.

What he did was thoroughly upset his mom — but just temporarily.

“She freaked out,” said Brough, a 29-year-old Salt Lake City native who is now a graduate student at George Washington

Why not? » Brough said he wasn’t even aware that people only needed one kidney until he tuned in to his favorite radio program, “This American Life,” about two years ago.

In one segment, Chaya Lipschutz, a Jewish woman from Brooklyn, explained how she came to be what is called an “altruistic donor” and how she felt guilty keeping it from her mother until after the surgery. Turns out that once her mom had some time to let it sink in, she became quite supportive. Sound familiar?

The story moved Brough, who kept thinking “Why not?”

As a man who loves science, he dug into the particulars, learning how the surgery is performed, what the recovery time is and how it could impact his health. He found out that people who donate a kidney have no decrease in their life expectancy, no real increase in disease and are usually back to full health in a couple weeks.

“If I can help somebody and it wouldn’t really affect my life physically, why not?” he thought.

He decided to do it, but then life got in the way. He adopted a baby boy. He moved to Virginia with his young family to change careers from graphic design to forensics.

The idea resurfaced, though, when he saw a local TV news piece about a kidney transplant at Georgetown University Hospital. He made the call in January and was a little surprised at how eagerly doctors responded. He was rushed through a battery of tests to determine if he was physically and emotionally capable of giving someone an organ.

Six months passed before he got the phone call. Doctors found a match and more importantly, they needed his help to do something that has never been done before.

Creating the chain » The pioneering group included sisters, brothers, husbands, cousins and friends, all willing to give a kidney to help an ailing loved one. But none was a perfect match for the person they were trying to help.

So medical teams played matchmaker, saying the husband’s kidney wouldn’t work for his wife, but it would help this woman over here. And that woman’s brother is a good match for this other woman.

And so on, creating a chain of eight people. Two other, smaller chains also were created in the 14-person exchange.

But the docs couldn’t make it work without two altruistic donors, sometimes called Good Samaritan donors, who were willing to give a kidney to someone they did not know. They are not unheard of but they are still pretty rare.

Brough was the first to have his kidney extracted on July 16. The rest took place over the next week, involving medical teams at two hospitals.

The kidney exchange was groundbreaking and not just because of the number of people involved. All seven of the recipients had developed antibodies that made traditional organ transplantation nearly impossible.

But a team of doctors, including Keith Melancon, the director of kidney transplants at Georgetown University Hospital, created a way to filter those antibodies out of the blood.

They call the procedure plasmapheresis and it should make it easier to perform kidney transplants, particularly for blacks who tend to have higher counts of antibodies.

Right now, there are about 6,000 people on dialysis in the Washington area and only about 250 kidney transplants are performed every year.
health

“Using plasmapheresis, we hope to double that number,” Melancon said.

Not worth living » Elizabeth Garner had always been an active woman, deriving joy from chasing around her kids, grandkids and now her three great-grandchildren. But two years ago, her kidneys failed and she has survived only with the help of a dialysis machine that cleaned the toxins from her blood.

She was in constant pain and lethargic. She thought that dying wasn’t such a bad option.

“I had got to the point that I did not want to live if I had to be on dialysis,” said Garner, who resides in Clinton, Md. “I know that dialysis keeps you alive, but a kidney lets you live.”

Her husband, Larry McPhatter, was more than willing to give her one of his kidneys, but he wasn’t a good match. So McPhatter agreed to donate to a stranger and in exchange, Brough’s kidney would go to his wife.

It was Brough’s first major surgery and while he felt fairly comfortable with the science, he couldn’t help being nervous.

“The whole time I felt a little selfish,” he said. He had a young family and if something went wrong, who would take care of them?

His wife Misty was very excited when he told her of his plan, but she, too, became a little anxious in the days before the procedure.

An immediate connection » Brough woke up to find a couple small holes in his abdomen and a five-inch incision along his hipline.The surgery went well and while he didn’t know it, in another surgical bay in Georgetown University Hospital, his healthy kidney was being transplanted into Garner.

Brough spent two days in the hospital and a week later he was back in class. He went from feeling selfish to feeling oddly detached. He said it felt like he had his appendix removed and his life quickly returned to normal.

But just last week, the seven donors met the seven recipients, many for the first time. Garner looked up from her wheelchair to see a tall young white man coming her way. She started crying and simply couldn’t stop.

“He almost lifted me out of the wheelchair to give me a hug,” she said. “He gave me the most wonderful embrace.”

Brough said he isn’t normally a “touchy-feely guy” but he couldn’t help himself. “I immediately felt a connection to her.”

They held hands and tried to talk, but Garner had a hard time coming up with what to say because “thank you” seemed so small in that moment. Even now, weeks later, she still finds it difficult to express the magnitude of her appreciation.

“In his heart, he knew he wanted to help somebody and I thank God I was that person,” she said. “He is such a gentleman, such a loving man.”

Brough, for his part, has a hard time explaining his feelings, too, saying the whole experience has been “very humbling.” Other than a small scar, he is back to his normal routine, while Garner’s life is dramatically altered.

Their story and that of the larger kidney exchange was profiled on the “Today Show,” NBC Nightly News and CNN among others. And while Brough said he is uncomfortable with all the attention, he does hope that he may inspire someone, just like Chaya Lipschutz inspired him.

And he plans on staying in touch with Garner and her husband, Larry.

“We’ll be good friends for life,” he said.

Once she gets a little stronger, Garner hopes she can do something for Brough.

“First thing I can do is baby-sit for him for a weekend and they can go have some fun,” she said. “That’s what I told Jordan. His little kid will fit right in.”

–

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Demand for living donors growing

Tuesday, August 11th, 2009

“Demand for living donors growing”

By Anne Geggis
NEWS-JOURNALONLINE.COM

A total stranger could save Barry Sror’s life in about one hour.

The 46-year-old Ormond Beach businessman and father of one has leukemia. His best hope for getting cured would be transplanting someone’s bone marrow to him, so that his diseased blood essentially would be replaced by the donor’s.

Such a transplant once required the donor to visit a hospital for bone marrow to be drawn out of the pelvic bone — a painful and time-consuming procedure that required anesthesia and a few days’ recovery. But since the late 1990s, new discoveries have made the donation almost as simple as giving blood.

The need for living donors has never been more critical. Figures from the United Network of Organ Sharing show the number waiting for organ transplants has increased 23 percent since 2003. While they wait, about 8,000 will die or become too sick for a transplant. There are currently 113,062 waiting for a vital organ, and 70 percent of those who have a disease like Sror’s don’t have a family member with compatible bone marrow.

So Sror, whose friends are organizing bone-marrow donor drives in the area this week, wants to take his appeal to get more signed up in the National Marrow Donor Program’s Be the Match Registry.

“This is something that is very simple and people don’t know about it,” Sror said in a telephone interview from Houston, where he’s receiving treatment from the University of Texas MD Anderson Cancer Center. “I didn’t know about it until I got sick.”

To register potential bone-marrow donors, the inside cheek is swabbed so the tissue can be tested for the markers that determine who the donor is compatible with. The results are stored in the national registry.

Dr. Tisha Foster, medical director of Florida’s Blood Centers, said the variety of diseases that can be treated through this sort of donation is expanding to include even sickle cell anemia. So that makes it even more urgent that more ethnic minorities join in registering as donors; African-Americans now have only a 60 percent chance of having a bone-marrow match, compared with an 88 percent chance for Caucasians.

Sror, who is from Israel, just needs one person, the right person, to come forward.

“If I have the transplant,” he said, “I have a very, very good chance of getting cured.”

He tries not to think of the alternative.

Meanwhile, here are the ways healthy people can help those who need donations:

KIDNEYS

Account for the largest number of organs needed, with 86,000 needing kidneys among the 111,000 registered for a transplant. The need is so severe that so-called “kidney swaps” have been done starting in 2000. In a swap, incompatible donor-recipient pairs are matched with other pairs of donor-recipients facing a similar challenge.

Donating a kidney can be harder for the donor than the recipient, who often experiences immediate relief from kidney-failure symptoms. The donor, on the other hand, needs two or three weeks’ recovery time.

LIVER

About 17,000 people are registered for the organ that serves as the body’s filter and digestion aid. A sliver of a living person’s liver was first given to a child successfully in the late 1980s and adult-to-adult liver transplants soon followed.

A donor can expect to be in the intensive care unit for about 24 hours after the operation and hospitalized for an additional five to seven days. It’s usually necessary to stay out of work and not do usual home activities for a month.

BONE MARROW

First performed in 1978, this transplant essentially replaces the blood-making factory in the body for recipients who have a blood disease, such as leukemia.

In the late 1990s, the procedure began to move away from extracting bone marrow from the hip and instead harvested peripheral blood stem cells in a procedure similar to giving blood plasma. That method now represents about 80 percent of the bone-marrow transplant procedures.

Five days before the donation, the patient receives daily injections of a drug that moves blood-forming cells out of the marrow and into the bloodstream. The blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells.

Even simpler: Cord blood harvested at the time of a baby’s birth now accounts for 20 percent of bone-marrow donations.

BLOOD

Donors can give up to a pint of blood in about a half-hour. According to the latest numbers from the American Association of Blood Banks, nearly 9.6 million people gave 15.7 million pints in 2006, but the demand remains great.

MULTI-ORGAN

Untimely deaths, such as car accident victims, often have the greatest potential to leave behind lifesaving organs, including hearts, pancreas, small bowels, eyes, corneas, heart valves, bones and skin grafts. But it’s estimated that 20,000 transplantable organs that could have been harvested were buried or cremated.

To be a donor visit donatelifeflorida.org or call 877-357-4273 to request a registry form. A national network for organ donation, Life Sharers, tries to motivate people to sign up to donate their organs at death by promising that anyone who signs up will have access to the organs that come to their network. More information is available at lifesharers.org or by calling 888-674-2688.

Bone-marrow registry drive

You might be a lifesaver for someone you don’t even know. In honor of Ormond Beach resident Barry Sror, who needs a bone-marrow transplant, three drives to register people on the National Marrow Donor Program’s Be the Match Registry have been organized:

· 10 a.m. to 1:30 p.m. Wednesday, Chabad Lubavitch of Greater Daytona, 1079 Granada Blvd., Ormond Beach. Phone: 386-672-9300.

· 2 to 6 p.m. Wednesday, 4Ever Fitness, 4639 S. Clyde Morris Blvd., No. 10, Port Orange. Phone: 386-788-5678.

· 10 a.m. to 6 p.m. Thursday, Palmer College of Chiropractic Clinic (at the back of the clinic), 4705 S. Clyde Morris Blvd., Port Orange. Phone: 386-763-2630.

Local kidney transplants to resume

After 10 months of inactivity, Halifax Health’s kidney-transplant program is poised to resume, with a surgical director starting there Aug. 24. Dr. Rod Mateo comes to Halifax after working as a multiple-organ transplant surgeon at the University of Southern California for 11 years.

Halifax’s first try last year at opening a kidney transplant center — replacing one that shut down at Bert Fish Medical Center in New Smyrna Beach in 2005 — proved a false start, with just four transplants performed in the new center’s six months.

–
Member, Board of Directors of OPTN/UNOS (General Public Representative – Living Donor, 2008-2011) and Executive Committee, 2009-2010
Invited Attendee to the OPTN/UNOS Kidney Transplantation Committee while on the board
Member of the Editorial Board of the UNOS Foundation’s http://www.transplantliving.org/, 2005 to present, and the NKF Transplant Chronicles, 2009.
Living kidney donor, 2003
297 whole blood and platelet pheresis donations & counting, 1976-present,

Please consider yourself asked! Sign up to donate blood today at http://redcross.org/donate/give/ or call 1-800-GIVE-LIFE (1-800-448-3543). Thanks!

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Lufkin teen needs community support for kidney transplant

Wednesday, August 5th, 2009

By JESSICA COOLEY
The Lufkin Daily News

Sunday, August 02, 2009

A Lufkin boy struggling with kidney disease since birth needs community support for a potentially life-changing operation.

Every Monday, Wednesday and Friday morning for the last seven years 16-year-old Adam McCleskley and one of his parents make a trip to Memorial Hermann Hospital in Houston, where he sits for the next several hours getting dialysis. McCleskey was born with autosomal recessive polycystic kidney disease (ARPKD), a genetic disorder with an incidence rate of one in 10,000, according to yougenesyourhealth.org.

“Because Lufkin has no pedi-nephrologists, pedi-dialysis or pedi-pulmonary, he has to go to Houston,” Kelli McCleskey, Adam’s mother said. “I take him two days a week and his dad one day a week. My dad was helping me by going one day a week, but in October 2008 he became sick and passed away December 28.”

ARPKD has a high mortality rate in infants — something the McCleskey family has experienced first hand. At 16 months McCleskey went into cardiac arrest and recovered but in 1997 the family lost an eight-day-old daughter named Kelson to the disease.

“She was also born with kidney failure and her father and I had to decide to take her off life support,” Kelli McCleskey said. “After her death, life was just too hard to deal with and our marriage ended. We had been married for 10 years, but it was very hard for me to handle her death.”

McCleskey was only two at the time of his sister’s death and doesn’t remember the experience. Although McCleskey’s life has been dependent on dialysis for the last seven years, a successful kidney transplant could change that, his mother, Kelli McCleskey said. Also suffering from cystic fibrosis, the boy has already been through one transplant in his life.

“In 2004 my mom donated her kidney to me and we thought it would work, but unfortunately it didn’t,” Adam McCleskey said.

Kelli McCleskey said that during surgery, doctors damaged her removed kidney before placing it in her son but were still hopeful it would function.

“When they took a biopsy later, they said it had 75 percent damage so it needed to be removed,” Kelli McCleskey said. “It was devastating to go through all that and have it not work. No other family members can donate. He has a cousin that is trying to donate her kidney through a matched donation program.”

Matched donation connects individuals who want to donate but aren’t a match for their own family member. Through a cross-matching system multiple transplants can occur. “We’re really hoping matched donation will work for us, but right now from the transplant and all the blood transfusions over the years, his antibodies are on high alert,” Kelly McCleskey said. “They’ll attack anything we try to do.”

For that reason McCleskey first needs to travel to John Hopkins Hospital in Baltimore, where a doctor has agreed to see him for a procedure that will desensitize his antibodies.

“Desensitization is a process that removes harmful antibodies from the blood stream. These antibodies, which fight foreign tissues like those found on a donated organ, can cause organ rejection. These antibodies are removed through a process called plasmapheresis,” a transplant services Web site stated. “Typically, three or four treatments are required prior to transplant. At the start of the plasmapheresis treatments, the patient receives anti-rejection medications to help prevent the reformation of the harmful antibodies. These anti-rejection medications are the same medications that the patient will continue to use after the transplant.”

“After the transplant” are words the family can’t wait to say, Kelli McCleskey said.

“We’re tired of waiting. We’re not going to wait for him to lose his strength before we start pushing for this,” she said. “We have a big family and he’s seeing everyone else doing all these things while he’s stuck in the dialysis chair.”

“That’s what hurts,” she continued, voice breaking with emotion. “It hurts a lot. When does he get to live his life?”

There will be a fundraiser for McCleskey at 2 p.m. today in the Lufkin Sam’s Club parking lot.

“We will be selling turkey legs, sausage-on-a-stick and Ben and Jerry’s has donated 50 pints of ice cream,” Kelli McCleskey said. “We would be so very grateful of anything the community can help us with.”

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York woman donates kidney to Texas officer

Monday, August 3rd, 2009

KATHY STEVENS The York Dispatch
Updated: 07/31/2009 11:08:41 AM EDT

Shari Perkins holds a photo of her father, Marlin Knaub, outside her home. Perkins is donating her kidney to a police officer in Texas. (Doug Bauman photo)
They kept it quiet for weeks, never letting retired police Capt. M. Rene Lozano know what was headed his way.

But in recent days, Shari Perkins and co-conspirators Linda Mares and Kari Quinn let the cat out of the bag telling Lozano he would receive Perkins’ kidney.

Perkins’ kidney had passed muster, proved a perfect match for Lozano, a Houston resident whose Type 1 diabetes led to kidney failure.

He is one of about 55,000 people nationwide who await kidneys, according to the U.S. Department of Health and Human Services.

He and Perkins check in next month at Methodist Hospital Transplant Center in Houston for the donor and transplant surgeries. Perkins will spend a few days in the hospital and up to eight weeks recovering at her York Township home.

If Lozano’s body accepts the kidney, he will spend two weeks recovering in the hospital and will remain on anti-rejection medication for the rest of his life. If the 55-year-old’s body rejects the organ, he’ll be placed back on dialysis, and the national waiting list.

But his family says divine intervention is at work and they remain faithful the operation will prove successful. They’ll know next month when Perkins, a 45-year-old wife, mother and homemaker, heads to Houston for the surgery.

A Web meeting: She encountered Lozano via Quinn’s posting on “Wish Upon a Hero,” a Web site. Quinn posted the wish after doctors told her health issues would prevent her from donating.

Quinn wrote, “He is a wonderful man that has always done everything in his power to help others whether it be providing Christmas for a needy family or giving someone his last dollar to put a smile on their face.”

Within 30 minutes of posting May 16, Perkins responded saying she would help.

Perkins soon learned that Lozano was a 30-year police veteran whose health forced retirement from the Houston Police Department. Lozano was sick through no fault of his own. He’d managed the diabetes for decades, but the disease began to take its toll on his kidneys.

His 6-foot-2-inch frame has withered since doctors put him on dialysis about six months ago. He’s had several strokes in recent months and currently is in physical therapy, said Mares, Lozano’s fiance, from her home in Houston.

Perkins, Mares and Quinn decided to keep the possible match a secret. They didn’t want him to become hopeful only to be disappointed. So they remained quiet until doctors gave the go-ahead.

Dad was donor: The women let go the secret at a Houston steakhouse in July. Mares told Lozano that Perkins was a friend from Pennsylvania.

Perkins arrived at the restaurant and delivered a card containing one of her favorite stories, about a guy who retrieved beached starfish and returned them to the ocean with the goal to save just one.

Perkins has had the same goal since her father, Marlin Perkins, died unexpectedly in 1995 of a heart attack. He was an organ donor, and inspired her to become a living donor.

Perkins told Lozano at dinner that night that she had a kidney for him if he would do her the honor of accepting, Mares said. He was quiet, thumbed through a menu to find words.

He looked at Perkins, then told her that he would hug her and jump for joy, if he could.

“I didn’t believe there were people like that in the world,” Lozano said Tuesday, speaking via telephone from his parents’ home in Houston. “She is willing to give a part of herself so I can live.”

He says he is one of the lucky ones, that there are other dialysis patients nearing death who have waited years for a kidney. Living donors decrease the wait, currently providing about one-third of about 14,000 kidneys each year.

“I call (Perkins) my guardian angel,” he said. “That’s exactly what she is.”

Doctors have assembled the surgery team for the hours-long procedure Aug. 25 .

“I don’t want accolades, I just hope our story will inspire one person to become a living donor,” Perkins said. “If that happens, then I’ve accomplished something.”

– Reach Kathy Stevens at 505-5437 or kstevens@yorkdis patch.com.

Kidney disease facts
—About 26 million American adults have chronic kidney disease

—Early detection can help prevent the progression of kidney disease to kidney failure.

—Heart disease is the major cause of death for all people with chronic kidney disease.

—High blood pressure causes chronic kidney disease, and chronic kidney disease causes high blood pressure.

—Those most at risk of kidney disease include people with diabetes, high blood pressure and family history.

—African Americans, Hispanics, Pacific Islanders, Native Americans and the elderly are at increased risk.

—Three simple tests can detect chronic kidney disease: blood pressure, urine albumin and serum creatinine.

—About 14,000 kidney transplants are performed annually; one-third of those organs come from living donors.

—About 55,000 people are listed at any given time on the national registry for kidney transplant.

—More than 3,000 die annually while awaiting kidney transplant.

—The one-year survival rate for transplant recipients is about 95 percent.

Source: The National Kidney Foundation and the U.S. Depart ment of Health and Human Serv ices. Learn more about kidney disease online at www.kidney.org.

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