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Stories from patients, family, friends and Mayo Clinic staff

Items Tagged ‘Primary Sclerosing Cholangitis’

March 31st, 2017

Friend’s Generosity and Successful Transplant Give Maikki Nekton a New Way of Looking at the World

By SharingMayoClinic SharingMayoClinic

Diagnosed with cancer of the bile ducts, Maikki Nekton needed a liver transplant. When her friend, Jenifer DeMattia, stepped up to be the donor, it changed both their lives.

Maikki Nekton was 32 years old when she had a life-saving liver transplant, thanks to her good friend, Jenifer DeMattia, who donated a portion of her own liver to Maikki.

Prior to the transplant, Maikki worked as a clinical social worker in the Maryland school system and for nonprofit organizations. Jenifer was her co-worker, and they became fast friends. Long-distance running was a shared passion, with the two women participating in 10K races and half-marathons whenever possible.

In April 2014, while training, Maikki began experiencing pain in her right hip. It was diagnosed as a stress fracture, which doctors said was rare for someone so young. Read the rest of this entry »

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Tags: cholangiocarcinoma, Dr Charles Rosen, Liver Transplant Program, Living donor transplant, Primary Sclerosing Cholangitis


November 22nd, 2016

Sharing Part of His Liver, Brother-in-Law Offers Something Greater: A Future

By SharingMayoClinic SharingMayoClinic

A unique treatment approach that included a living-donor liver transplant has allowed Isaac Jackson to put cancer behind him and once again focus on his family, career and friends. Isaac Jackson was living a peaceful life, with a large, loving family, a successful law practice, and lifelong friends, when in early 2014, his life changed dramatically.

In January, Isaac began feeling sick whenever he ate. A visit to his primary care doctor in his hometown of Eugene, Oregon, led to an initial diagnosis of gallstones. But when an MRI of Isaac’s abdomen showed that the entire right side of his liver was no longer working and his bile ducts were almost completely blocked, his physician promptly connected him with specialists in Seattle.

“We were scared but thought that I was suffering from some sort of bile duct disease. We were hopeful,” Isaac recalls. “Unfortunately, our worst fears came true, and it put our family to the test. How would we respond? Would we stay hopeful? Would we be grateful for what we had?” Read the rest of this entry »

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Tags: Dr Julie Heimbach, liver transplant, Primary Sclerosing Cholangitis


September 24th, 2016

Liver Transplant Allows Young Father to Be There for His Family

By SharingMayoClinic SharingMayoClinic

Thanks to a living-donor liver transplant at Mayo Clinic, Bryan Duncan overcame a life-threatening liver disease and has been able to return to life with his young family.

Bryan Duncan didn’t think twice about the lab tests he had as part of a routine medical checkup in the fall of 2014. A 29-year-old father of two small children, Bryan led a busy life, didn’t have any health problems, and felt fine.

When the test results came back, though, they showed enzyme levels in Bryan’s liver were higher than normal. This unexpected finding kicked off more than two years of extensive medical care. It brought Bryan from his hometown of Mountain View, Arkansas, to Mayo Clinic's Rochester campus, where he was diagnosed with a rare liver disease, and where he eventually received a life-saving living-donor liver transplant.

“The way my disease works, if I had waited for a deceased donor, I probably would have been too sick for a transplant,” Bryan says. “Being able to have a living-donor transplant opened up the opportunity for me to get the second chance I needed.” Read the rest of this entry »

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Tags: Dr Nicholas LaRusso, gastroenterology, Hepatology, liver transplant, Living donor transplant, Mayo Clinic Transplant Center, Primary Sclerosing Cholangitis


July 23rd, 2013

For patient in Honolulu, Mayo Clinic is just one click away

By Makala Arce MakalaArce

Traci Downs with her husband, Hunter, and son, Aidan

Living in Hawaii definitely has its benefits — the beautiful scenery, the tropical weather, the ocean. But, what if you are living with a chronic condition and there aren't any specialists on the island? For Traci Downs, the answer was Mayo Clinic and Patient Online Services, a tool that enables patients to connect with Mayo Clinic anytime, anywhere. Read the rest of this entry »

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Tags: internet, Matthew Clark PhD, patient app, patient online services, Primary Sclerosing Cholangitis, Traci Downs


January 28th, 2010

A Gift of Love, and Life

By Lee Aase, Director, Mayo Clinic Social Media Network LeeAase

Don and Heather Schwabe

Many people can relate to making some type of sacrifice for the one they love. For some, it’s a move far away from family and friends. For others, it’s changing jobs or schools to be closer to their beloved. For 46 year-old Don Schwabe from Boise, Idaho, it was giving a part of himself he had never imagined.

Three years ago at the age of 37, Don’s wife Heather Schwabe was diagnosed with primary sclerosing cholangitis, a chronic liver disease caused by progressive inflammation and scarring of the bile ducts in the liver. The cause is unknown but often the diagnosis is linked to a prior diagnosis of inflammatory bowel disease. Primary sclerosing cholangitis (PSC) leads to liver damage and, eventually, liver failure. Liver transplant is the only known cure. The time from first diagnosis to liver transplant is 12 to 18 years, on average.

Known for her eternal optimism, Heather tried not to think about the eventual and perhaps inevitable need for a liver transplant. That need came much sooner than anyone would have expected when Heather was diagnosed with bile duct cancer, a known complication of PSC, in July 2009 at the age of 40. Heather’s doctor from Boise, who is also a family friend, delivered the news. He and her doctors in Seattle referred them to Mayo Clinic in Rochester, Minnesota. Within two weeks, Heather and Don arrived at Mayo Clinic and began learning the implications and treatment options for Heather’s disease. It was quickly determined that, in addition to undergoing chemotherapy treatment for her bile duct cancer, Heather would soon need a liver transplant.

What neither of them would have imagined at that time was that Don would end up being Heather’s donor, and their surgeries were scheduled on the 18th anniversary of the date they met.

Don walking to see Heather after surgery

Don walking to see Heather after surgery

Don and Heather seeing each other right after surgery

Seeing each other right after surgery

Here are a few video clips of Heather and Don telling their story – a story about the gift of love and life.

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Tags: Bile duct cancer, Live Donor Transplant, liver transplant, Matthew Clark PhD, Primary Sclerosing Cholangitis, transplant


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