June 30th, 2014 · 1 Comment
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 »
May 14th, 2014 · Leave a Comment
By Paul Scotti
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 »
April 30th, 2014 · Leave a Comment
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 »
April 23rd, 2014 · Leave a Comment
By Paul Scotti
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.”
April 3rd, 2014 · Leave a Comment
By Paul Scotti
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.
March 26th, 2014 · Leave a Comment
By Paul Scotti
Hildred "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 »
March 18th, 2014 · 1 Comment
By Jason Pratt
Written by Elaine Ginn, transplant patient at Mayo Clinic in Florida
As 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.
January 15th, 2014 · 1 Comment
By Mayo Clinic
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 »
December 19th, 2013 · Leave a Comment
By Mayo Clinic
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.
December 12th, 2013 · Leave a Comment
By Mayo Clinic
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 »