Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Transplant Archive

Twin Sisters Share Many Things in Life, Including New Lungs

Posted on April 3rd, 2014 by Paul Scotti

Linda Foster (left) and Brenda Santinelli (right), 60-year-old twin sisters from Pensacola, Fla and patients of Mayo Clinic in Florida.

Linda Foster (left) and Brenda Santinelli (right), twin sisters from Pensacola, Fla and patients of Mayo Clinic in Florida.

It’s often said that twins share similar traits and have unique bonds that other siblings simply don’t have. Sometimes those traits are things one would rather not share with their twin, especially when it comes to a potentially life-threatening medical condition.

Linda Foster and Brenda Santinelli, 60-year-old twin sisters from Pensacola, Fla., are active women with a love of the outdoors. Hiking, camping, fishing, hunting and other activities were well-suited to both their lifestyles. Both sisters are in long-term marriages. Both have young grandchildren. They even both have 20-plus-year careers at Walmart in their hometown. Both were former smokers who quit several years ago.

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Patient Honors Her Liver Donor and Faith in New Book

Posted on March 26th, 2014 by Paul Scotti

Peggy Lyons blog story photoHildred "Peggy" Lyons' first signs of liver problems occurred back in 1968, around the time of her son's birth, when her physician noticed she had elevated liver enzymes. An otherwise healthy woman who worked and also volunteered as a fitness instructor at her church teaching several classes a day to both adults and children, Lyons dismissed it as pregnancy-related and didn’t gave it much thought for the next 30 years.

Unfortunately, her liver problems resurfaced right around the time she retired from her job at Proctor and Gamble in 1998. Lyons was told by her physician in her hometown of Albany, Ga., that her liver enzymes were more seriously elevated and that she should see a specialist for a diagnosis. He also told her to cut back teaching her exercise classes, something she was reluctant to do. After going to a medical center in Atlanta for an evaluation of her condition, she was left wondering what her next steps were as she grew progressively ill without any answers.

Lyons turned to her church for support, where her pastor and fellow members prayed and fasted, hoping for an answer. On the last day of a 30-day fast, her pastor received a call from "a total stranger" in her community who said, "The answer is in Jacksonville, Fla., at the Mayo Clinic." Read the rest of this entry »

A New Chapter: Life After My Liver and Kidney Transplant

Posted on March 18th, 2014 by Paul Scotti

Written by Elaine Ginn, transplant patient at Mayo Clinic in Florida

Elaine Ginn with her book, PatchworkAs I sit here at the Mayo Clinic lab on the Florida campus waiting to be called for a lab draw of a dozen or so tubes of my blood, my mind returns four years to the time before my liver and kidney transplant surgery. I can't say I had given up, as that just isn't in my nature, but I had become so ill that I could imagine myself slipping into oblivion and perhaps not minding.

It was December, about five months before the transplant, and my two local grandchildren had come over to spend the night and help me decorate the Christmas tree. Isabel, who had just turned four, would carefully take each ornament from its storage box and exclaim, "Gramma, isn't this the most beautiful  'ordament' you have ever seen?" Then she would carefully place it on my condo-sized fir, about as tall as Isabel herself. She would admire her work and ask Javier, her charming 8-year-old brother, if he didn't also think it was beautiful. He would nod his head briefly, preferring to focus on the TV, where "How the Grinch Stole Christmas" was commanding his attention.

After she had loaded the tiny tree with more beautiful 'ordaments' than it should have held, I finally tucked the two of them into their makeshift beds, with the proverbial "visions of sugar plums dancing in their heads." I made my way to kitchen to clean up the cocoa mugs and the dishes from dinner. While standing at the sink with my hands in dishwater, my little curly headed princess walked out to the kitchen and hugged my legs, murmuring something I could not make out over the running water. I turned off the faucet, dried my hands, knelt down to her level and asked her to repeat what she had said.  My heart melted as her soft little voice repeated, "You are my most love, Gramma. You are my most love." If ever there was a reason to live, this was it. If 2009 was to be my last Christmas, it would be enjoyed with a very full heart.

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From the Alaskan Woods to Top of the Transplant List

Posted on January 15th, 2014 by mayoclinic

Dennis Chavez with his children, Perry, Sparrow, Zach and Destiny.

Dennis Chavez with his children, Perry and Sparrow, left, and Zach and Destiny, right, following lung transplant surgery.

The first sign something was wrong came when Dennis Chavez was out hunting caribou with his wife, Maria. The Wasilla, Alaska, native suddenly found that he couldn’t cover ground like he used to. He quickly became winded — much more quickly than he expected.

He ignored the signs for a while. But one day a few weeks later, he found he could barely make it up a flight of stairs. He was breathing hard. His face was gray. His wife and daughter knew something was wrong. They got him on a flight to Anchorage, where after a series of tests and a biopsy, his doctor determined that his heart was enlarged and his lungs were hardening. Then his lungs collapsed.

The diagnosis was Langerhans, a rare disease where, according to the National Institutes of Health, immune system cells build up in the body causing a range of problems, as well as pulmonary hypertension. He would need a double-lung transplant.

Chavez's doctor in Anchorage told him he was going to need to be seen at a larger medical center equipped to do transplants and handle a complex case like his. Chavez and his wife did some research and decided their first choice was Mayo Clinic. What they learned was reinforced by his doctor.

"My doctor said, 'Mayo Clinic is the best place in the world,'" Chavez says. "I wanted to go to the best place.

Getting to Mayo Clinic, it turned out, wasn't going to be so easy. Read the rest of this entry »

Living Donors Help Family Members Battle Kidney Disease

Posted on December 19th, 2013 by mayoclinic

Adam Gray (left), kidney donor, shares a fist bump with his cousin and kidney transplant recipient Trey Sullivan.

Adam Gray (left), kidney donor, shares a fist bump with his cousin and kidney transplant recipient Trey Sullivan.

Written by Jane Sullivan Horne

When I received a kidney from my brother David 10 years ago at Mayo Clinic in Florida, little did I know that someday my only son would have to undergo the same life-saving procedure after suffering from the same rare kidney disease that has plagued my family for several generations. Nor could I imagine that my brother’s son, Adam, would also give the same life-saving gift to my son, Trey, just 10 years later.

Several of my family members have suffered from a rare genetic kidney disorder called FSGS (Focal Segmental Glomerulosclerosis), which causes scarring of the kidney and the eventual loss of function. According to the National Institutes of Health, which is studying our family’s history with this disease, mine is one of only 20 families in U.S. with this genetic pattern afflicting several generations of relatives.  My father died of end stage renal disease when I was only 11 months old. My father's mother, and two of his brothers, also died of the disease. And the only exposure we’d had to transplants was in 1970 when our mother gave our brother, James, one of her kidneys. I eventually was diagnosed with FSGS and now my 26-year-old son, Trey, has it.  While there is no cure for FSGS, a kidney transplant can give the patient a high quality of life for many years. I am truly an example of that now, more than 10 years after my transplant surgery.

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Boo Maddox takes on H1N1, dialysis, and complications on his way to a successful kidney transplant

Posted on December 12th, 2013 by mayoclinic

Boo Maddox

A year ago, the Robert Maddox family from Boyce, La., would never have imagined attending the 50th Anniversary of Kidney Transplantation celebration event at Mayo Clinic this month. A year ago, their 9-year-old son Robert, who goes by the nickname "Boo," was struggling to survive, and a transplant seemed impossible.

After a devastating bout of H1N1 (swine flu) in 2009 when he was just 5 years old, Boo spent nearly 500 days in Children’s Hospital of New Orleans. After multiple surgeries, numerous transfusions, and months of uncertainty, he recovered and survived despite the odds. But he was left with renal failure, dangerously high pulmonary pressure, and susceptibility for recurring infections. Doctors told the family that he would never be a candidate for a transplant, and was destined for a life of dialysis and complications from the high pressure and infections.

Determined to find hope, Robert and Renee Maddox brought their son to Mayo Clinic last winter and met with the kidney transplant team. Read the rest of this entry »

Identical Twins Share Genetic Makeup, and a Kidney

Posted on November 25th, 2013 by mayoclinic

When Ernesto Boleaga learned that he needed a kidney transplant, the perfect donor, his identical twin brother, Jose Luis, was ready and willing to help. And because the Boleagas have the same genetic make-up, Ernesto’s body accepted Jose Luis’ kidney as its own.

For most patients, however, an identical twin donor isn’t an option, and they need to take medication to suppress their immune system so the body doesn't reject their new kidney. Doctors at Mayo Clinic want to change that.

The video below shows the Boleaga’s story and how Mayo Clinic physicians are researching ways to grow organs from a patient’s own stem cells. It's called regenerative medicine, and it offers hope for a solution to organ rejection.

http://www.youtube.com/watch?v=vAtPL0_EUiY

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The Decision to Save a Stranger’s Life

Posted on November 20th, 2013 by mayoclinic

A patient in need of transplant touches Dr. Phil Fischer's heart and prompts him to explore living donation. As a result, a patient in need of a kidney lives on, enjoying her grandchildren, golfing and dancing.  

The shortage of deceased donor organs has reached a crisis, with almost 120,000 people in need of a lifesaving organ nationwide. More than 3,000 of those people are Mayo Clinic patients. But for kidney, liver and bone marrow transplant patients, living donors can help shorten the wait time.

A recent survey found that nearly half of Americans would consider donating to a complete stranger — a statistic that has more than doubled in the past decade. It is becoming increasingly common for people to donate to family, friends and even strangers, so one of the 120,000 people on the wait list can receive the gift of renewed life.

One such donor is Phil Fischer, M.D., a pediatric and adolescent medicine physician at Mayo Clinic Children’s Center. In this video interview, Dr. Fischer tells how a patient in need of a kidney transplant touched his heart and prompted him to explore anonymous living donation, sometimes referred to as good Samaritan, non-directed or altruistic donation. Dr. Fischer’s selfless act of donation enabled a woman in need of a kidney to live a full life, enjoying her grandchildren and dancing.  Read the rest of this entry »

Sister’s Kidney for Little Brother

Posted on November 11th, 2013 by mayoclinic

For his entire life, radio host James Rabe has known that one day he'd need a new kidney. A disease called Alport Syndrome slowly caused his kidneys to fail. As his condition advanced, the search for a new organ began. His big sister stepped up and gave part of herself so her little brother could live. They share their story in the video below.

While the outcomes for transplant patients who receive deceased donor organs are very good, transplants performed from living donors, like the gift given to James by his sister, can have several advantages. Read the rest of this entry »

Living for Today: Husband and Wife Battle Lymphoma Together

Posted on November 4th, 2013 by mayoclinic

Todd Blake plays guitar as his wife Maja sings.

It’s tough for anyone to deal with a cancer diagnosis, especially someone at the age of 18. Todd Blake, a Jacksonville, Fla., native, was just beginning life as a freshman at the University of Florida when he was diagnosed with late-stage Hodgkin’s Lymphoma, a serious form of blood cancer. Fast-forward through countless treatments and multiple relapses, Todd decided to make the most of his situation by starting a nonprofit organization to help other young adults deal with their cancer diagnosis. Now, his wife, Maja, has  joined the battle against cancer — recently joining Mayo Clinic’s Cancer Center research team and pursuing future cures for several types of blood cancer.

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