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Transplant Archive

January 27th, 2015 · Leave a Comment

Surviving Hepatitis C — A Patient’s Journey Through Two Liver Transplants

By Paul Scotti

Mayo Clinic patient Nellie Betancourt (left) with her husband Marcelo Castro on the Mayo Clinic in Florida campus January 2015.

Mayo Clinic patient Nellie Betancourt (left) with her husband Marcelo Castro on Mayo Clinic's Florida campus in January 2015.

 

For most organ transplant recipients, receiving the “gift of life” is a one-time experience. But for Nellie Betancourt, battling the hepatitis C virus that had been in hiding in her body for years required another “second chance at life,” thanks to a second generous donor and a new generation of anti-viral drugs.

Betancourt, a 56-year-old mother of two and grandmother of seven from Puerto Rico, was first diagnosed with elevated liver enzymes during a routine exam in 1995. Further testing revealed a positive result for the hepatitis C virus, which resulted in several rounds of standard anti-viral drug treatments over the next several years, none of which were successful in effectively managing her disease. This began a 20-year battle with hepatitis C that was to eventually include two liver transplants performed at Mayo Clinic’s Florida campus.

“By 2002, I was told that my liver enzymes were rapidly increasing, and that I’d eventually need a liver transplant or face liver failure,” says Betancourt. “I was only 42 years old at the time.”

Looking for answers, Betancourt then went to the Clinic of Americas in Puerto Rico where she had her first exposure to Mayo Clinic. Mayo participated in a program where they periodically sent transplant physicians to Puerto Rico to evaluate potential transplant patient candidates. Betancourt was evaluated by a Mayo physician visiting Puerto Rico, who determined she was a good candidate for a liver transplant. She decided to go to Florida to be listed for a liver transplant and have the surgery once a match was found.

Betancourt received a new liver in October 2004 and appeared to be doing well after surgery. But the good news about her recovery didn’t last long, as the hepatitis virus returned about two months after her transplant. Treatment with medications began immediately, and Betancourt went back to Puerto Rico to resume her life. The treatments seemed to work at first, and her virus was almost undetectable. But in 2007 during a scheduled exam, it was clear that her liver enzymes were again on the rise. The persistent hepatitis C was damaging her new liver.

Another regimen of anti-viral drug treatments was ordered, but eventually a second liver transplant was necessary. That surgery occurred in January 2011 at Mayo Clinic. However, her battle with hepatitis C still wasn’t over. Betancourt experienced a relapse several months after the second transplant. Even though she was placed on traditional hepatitis C treatments after her transplant, they were again ineffective in clearing the resistant virus.

This time, her hepatologist, Barry Rosser, M.D., decided to be very aggressive in her treatment to control her relapse and save the second liver. He put his patient on a newly approved anti-viral drug, which she received for 12 weeks. Betancourt was one of the early patients to be put on this new drug at Mayo Clinic. The treatment seemed to work, and her hepatitis C was virtually undetectable after only four weeks on the medication. With close monitoring and follow-up care, Betancourt’s disease finally seems to be under control.

Betancourt and her husband, Marcelo Castro, now split their time between Puerto Rico and Jacksonville so she can remain close to Mayo Clinic as part of her post-transplant monitoring.

“Today I’m doing well, trying to lead a normal life, remaining emotionally stable, physically active and staying optimistic,” says Betancourt. “I want to thank my donors who have saved my life more than once. Organ donation truly does save lives.”

Betancourt also acknowledges all of her Mayo Clinic caregivers, from physicians and nurses to transplant coordinators and even her translators, for the exceptional treatment that she received.

“Mayo Clinic has given me my life back, thanks to the caring and professional people I have interacted with over the years here,” she says. “They’ve helped make this difficult journey a just little bit easier.”


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Tags: liver transplant, transplant, Florida Campus


October 30th, 2014 · Leave a Comment

Patient Attributes Health to Excellent Care, A Generous Donor, and a Terrible Spider Bite

By Hoyt Finnamore

Jane Applen Anderson saw here health improve after a kidney and pancreas transplant.. You never know how an experience – even a negative experience – can shape the rest of your life. Decades ago, when Jane Applen-Anderson came to Mayo Clinic Hospital, Methodist Campus, in Rochester with her leg swollen to three times its usual size, she wasn’t thinking about what good could come out of it.

She would come to learn she’d been bitten by a poisonous brown recluse spider. Mayo Clinic doctors treated her infection, removed the dead tissue, and worked to repair the damage done. They saved her leg, and they saved her life. That was just the first time.

While in the hospital, Jane was informed that tests showed her type 1 diabetes needed to be regulated more closely. Otherwise, she could lose her kidney function and her vision within the next year. Refusing to let the condition bring her down, Jane carefully followed her diabetes self-care plan. “You have to be a responsible patient, and do your part to follow your care plan,” she says.  Read the rest of this entry »

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Tags: Brown Recluse, Kidney and Pancreas Transplant, Type 1 Diabetes


August 25th, 2014 · Leave a Comment

Physician Experiences the Mayo “Patient Experience” After Double Lung Transplant

By Paul Scotti

Joseph J. Tepas III, M.D., a 68-year-old pediatric surgeon in Jacksonville, Florida, who had idiopathic pulmonary fibrosis and later a lung transplant at Mayo Clinic in Florida.

When a doctor suddenly becomes the patient with a life-threatening illness, Mayo Clinic’s commitment to high-quality medical care that puts the needs of the patient first takes on fresh perspective, especially as it relates to the principle of compassionate care, which is a hallmark of Mayo Clinic.

Such was the case when Joseph J. Tepas III, M.D., a 68-year-old pediatric surgeon in Jacksonville, Florida, learned that the wheezing and shortness of breath he was experiencing turned out to be idiopathic pulmonary fibrosis, a potentially life-threatening disease that occurs from unexplained scarring of the lung tissue.

In addition to doing pediatric surgery, Dr. Tepas is a practicing trauma surgeon and surgical intensivist. He is the medical director of the region’s only pediatric trauma unit, and, as a retired captain in the Navy Reserve, appreciates the critical importance of maintaining a personal commitment to health and fitness. Dr. Tepas had always lived a healthy lifestyle and, other than some occasional allergy symptoms, never had any significant health issues. But lying dormant in his otherwise healthy body was a disease that was quietly scarring and shutting his lungs down.

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Tags: Katie Caples, Katie Ride for Life, lung transplant, MayoClinicFL, Pulmonary Fibrosis


August 14th, 2014 · Leave a Comment

A Kidney Between Friends

By Hoyt Finnamore

Todd Goldrick, transplant patient, stops for a photo with his donor, Marty Yeager. Todd Goldrick was living the dream. Good job. Loving wife. Two young, healthy kids. Weekends spent playing golf, softball, kayaking, hiking, running or just hanging around home with the family. But that changed suddenly in 2010, when he and his wife simply tried to buy some life insurance. He was just 28.

"Mine came back straight out denied," Todd says. "They told me the reasons. There was a whole long list -- high cholesterol, high blood pressure, and a few other things that I don't remember exactly."

Before that day, Todd says he'd been to see his doctor in the Minneapolis–Saint Paul area "maybe every two years," so the policy denial came of left field. In fact, he says it scared him into doing nothing about it, at least initially. "I was kind of naïve and a little scared to go back to the doctor," he says. "So I didn't do anything."

Six months later, he got a sinus infection that wouldn't go away, and eventually he went to urgent care, where some flags were raised unrelated to his sinuses. "They took my blood pressure, and it was 200 over 120," he says. "At that point, they told me I needed to go to the ER."  Read the rest of this entry »

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Tags: Alport syndrome, kidney disease, kidney transplant, Living Donor Transplant


August 13th, 2014 · Leave a Comment

Leukemia Survivor Volunteers in a Unique Way to Help Fellow Bone Marrow Transplant Recipients

By Paul Scotti

Charlie Willwerth, a 61 year-old leukemia survivor and bone marrow transplant recipient from St. Augustine, Fla. is taking the necessary steps to help bring life-saving stems cells to others in need of a bone marrow transplant. Some people who overcome a life-threatening illness feel motivated to give something back to those who helped make their recovery possible. Charlie Willwerth, a 61-year-old leukemia survivor and bone marrow transplant recipient from St. Augustine, Florida, is taking steps to help bring life-saving stems cells to others in need of a bone marrow transplant.

Two years out from his bone marrow transplant, and with his leukemia in remission, Charlie recently completed courier training with Be The Match, the world’s largest bone marrow registry, to become a volunteer stem cell courier. His new “job” -- transporting life-saving stem cells from a donor’s location to a matching recipient -- can take him anywhere in the world.

“This is the most direct way I can help others who have helped me get a second chance at life,” says Charlie. “If it wasn’t for my donor, I might not be here today to have the opportunity to help others with needs similar to mine.” Read the rest of this entry »

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Tags: Bone Marrow Donor, Bone Marrow Transplant, Dr James Foran, Leukemia, Mayo Clinic in Florida


June 30th, 2014 · 1 Comment

Nicole’s Journey From Nurse to Transplant Patient and Back

By Hoyt Finnamore

Mayo Clinic nurse and transplant patient Nicole Jahns. When Nicole Jahns was just five months old, her parents – and her doctors – knew something was wrong. She wasn't gaining weight like a five-month-old should, and she wasn't, as her doctors put it, "thriving." They soon discovered why. Nicole had cystic fibrosis, an inherited disorder that affects the cells that produce mucus, sweat and digestive juices causing them to become thick and sticky rather than thin and slippery, as they should be. It's a life-threatening condition that can cause severe damage to a person's digestive system and lungs.

Though it's been challenging at times, Nicole has never allowed her condition to stop her from living her life, and she dedicated herself to caring for others as a nurse at Mayo Clinic in Rochester. In late 2012, Nicole’s life was interrupted for six months while she waited for a double lung transplant. That transplant finally came in early May 2013, but getting there wasn't easy.

For starters, in a story in a local newspaper, one of Nicole's pulmonary physicians at Mayo Clinic, Mark Wylam, M.D., said that to simply stay on the transplant list, Nicole couldn't leave the hospital during her six-month wait for a transplant. Not even to simply have lunch or a cup of coffee with family or friends. Read the rest of this entry »

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Tags: Cystic Fibrosis, Dr Mark Wylam, lung transplant, Nursing, Patient Stories, transplant


May 14th, 2014 · Leave a Comment

Miracle Patient Overcomes Unique Challenges to Receive Double Lung Transplant

By Paul Scotti

Curtis Higgons, 22 year-old double lung transplant recipient at Mayo Clinic in Florida poses at the bowling alley with his bowling ball.

Photo by Ninoska A. Nunez

To 22-year-old double lung transplant recipient Curtis Higgons, being dubbed the “miracle patient” by his physicians may seem somewhat overstated. But when you consider the medical challenges his doctors had to contend with in preparing him for a life-saving double lung transplant, his moniker may be well deserved.

Curtis was born with cystic fibrosis, an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States alone. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and can lead to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. As the diseases progresses, lung transplantation often becomes a last treatment option.

“Although I was diagnosed with CF at six months old, it only had minor effects on my breathing until I reached my early high school years,” says Curtis. “I was a varsity athlete in bowling and golf, but during my sophomore year of high school things began to progress, and I ended up in the hospital three times.”  Read the rest of this entry »

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Tags: Curtis Higgons, Cystic Fibrosis, lung transplant, Mayo Clinic Florida, patient story, transplantation


April 30th, 2014 · Leave a Comment

She Was Born with Two Holes in Her Heart and No One Knew

By Cynthia (Cindy) Weiss

Ileana Hernandez, 27-years old, was born with two holes in her heart.

Lung transplant brings unexpected answers to 27-year-old

Ileana Hernandez was born with two holes in her heart. But for 27 years, no one knew.

Hernandez, a computer systems engineer, worked long hours at her job with Bank of America in Jacksonville, Fla. She had transferred from her native Mexico because of her particular set of skills. Things were going fine until she started to notice shortness of breath when she climbed to her upstairs apartment.

“I had an explanation for everything -- it was the long hours, or the weekend-long computer installations, or the fact that I hadn’t slept in two days,” Hernandez recalls. As the youngest of three children growing up in Guadalajara, Mexico, she had led a normal life, did weight training in high school, participated in folkloric dancing -- including some parades -- and had no problem getting through college.

“Exhaustion was my justification [for the symptoms],” Hernandez says. But one evening, as she climbed the steps to her apartment with two bags of groceries, she ran out of breath and had to hold on to the rail. She felt pain in her chest. She composed herself and still went to work to do an evening computer systems installation thinking that the chest pain would go away. It didn’t, and by the next day she knew it was time to find a doctor. Read the rest of this entry »

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Tags: Cesar Keller, Eisenmenger syndrome, Ileana Hernandez, MayoClinicFL, patient story


April 23rd, 2014 · Leave a Comment

‘Giving Back, Like My Donor Did for Me’

By Paul Scotti

Robert-Duffy760

After 35 years on the road as a video technician for the CBS network covering major sporting events including the Super Bowl, the Olympics, SEC football, the Masters Golf Tournament, and the U.S. Open Tennis Tournament, Brooklyn native Robert Duffy was living a very active and busy life that kept him on the road about 240 days a year. At 60 years of age, his diabetes was under control, and he otherwise seemed healthy as he led a life of irregular hours, extended travel and living out of hotel rooms.

All that changed in 2011, when he became ill while covering a golf tournament in San Diego. He went to the hospital, and during his 10-day stay, Duffy was diagnosed with both liver and kidney disease. He was told he needed to have a confirmed appointment with a transplant center before he could be released from the hospital. Fortunately for Duffy, he had recently moved to Amelia Island, Fla., just a few miles down the road from Mayo Clinic in Jacksonville, the only transplant center in the Jacksonville / northeast Florida area.

“I was told I needed both a liver and kidney transplant, and was extremely lucky to end up at Mayo Clinic, as they were the only transplant center willing to list me because of my hepatitis-C, which I contracted in my teens but has been dormant for the past 40 years,” says Duffy. “The fact that I had recently moved to the Jacksonville area, where a top transplant center happened to be located, was a true blessing in my case.”

Duffy was put on the transplant list in March 2012 and received both organs from a deceased donor on Feb. 14, 2013, which happened to be Valentine’s Day and the birthday of his beloved dog, Bella. One year later, he is doing well and has decided to devote his life to helping others.

“I have a new outlook on life after going through this experience,” he says. “Your health is your wealth, and nothing else really matters if you aren’t healthy and happy. I’ve decided to spend my time giving back to others in need, like my donor has done for me.”

Since Duffy lost his father at the age of 12 and understands the need for a male mentor at that impressionable age, he is now involved in several community activities relating to children in the Amelia Island area.

“I know what it felt like losing my dad at a young age, and figured maybe I can help fill that void in some small way for other kids in the same situation,” he says.

Duffy participates in the Boys and Girls Club in Amelia Island, an organization that helps young people to reach their full potential as productive, caring and responsible citizens. He is mentoring young students and helping them with their homework.

He also got involved in a program called “Instruments Zoo,” sponsored by the Jacksonville Symphony Guild, that brings musical instruments into the public schools.  This program is targeted to fifth grade students and provides an opportunity for them to get hands-on experience trying out an instrument that they might want to eventually pursue and learn how to play.

His latest community involvement effort is with “Take Stock in Children,” a government program targeted to low-income children of high school age. Duffy is mentoring a high school student during his entire four years of study, with the goal of helping him work hard, stay out of trouble, graduate from high school and ultimately receive a fully paid college education through the program.

“Giving back to the community, especially children, is important to me at this stage of my life,” says Duffy. “I’d love to go back to my job at CBS. They are like extended family and have been very good to me. But I realize that I probably couldn’t handle the rigors of that job anymore, with all the travel, so I’m focusing now on staying healthy and helping others in need. That’s the best choice for me right now.”

Duffy is grateful for his second chance at life thanks to his experience at Mayo Clinic in Florida. “From day one everyone involved in my care at Mayo Clinic has been the best and treated me with kindness and respect,” says Duffy. “My life was in their hands, and now that I have been given a second chance it is my turn to pay it forward.”

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Tags: Hepatitis, kidney transplant, liver transplant, MayoClinicFL, transplant


April 3rd, 2014 · Leave a Comment

Twin Sisters Share Many Things in Life, Including New Lungs

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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Tags: lung transplant, MayoClinicFL, transplant, transplantation


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