Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

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. [...]

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Tags: cystic fibrosis, Dr Mark Wylam, lung transplant, Nursing, Patient Stories, transplant

June 26th, 2014 · Leave a Comment

College Student Overcomes Anti-NMDA Receptor Encephalitis

By Susana Shephard

In her early 20s, Erin Ayub has big plans. As a college student in El Paso, Texas, she is also a musician and aspiring writer. She had to put her plans on hold for a bit while in a medically induced coma at Mayo Clinic in Arizona due to a rare illness — anti-NMDA receptor encephalitis.

Now on the road to recovery, Erin and her mom share her story in this video.

Tags: Arizona, encephalitis, Erin Ayub, mayo clinic, Neurology & Neurosurgery, patient story

June 25th, 2014 · Leave a Comment

Fiction Becomes Reality: Surviving Metastatic Appendiceal Cancer

By Susana Shephard

"There's something weird going on," explained the surgeon in Las Vegas, Nevada. For retired hotel executive Charles Livingston, these words signaled the start of a long journey, which began following an emergency appendectomy. He had experienced abdominal symptoms and received various diagnoses before being rushed to the operating room for a burst appendix.

Following surgery, Charles received devastating news -- he had metastatic appendiceal cancer. His local oncologist referred him to Mayo Clinic in Arizona where he met with Nabil Wasif, M.D., a surgeon, and John Camoriano, M.D., an oncologist. Charles says he was immediately struck by the genuine concern both physicians had for him as a human being.

Working together as a cancer care team, the physicians recommended a debulking surgery and hyperthermic intraperitoneal chemotherapy (HIPEC). Charles agreed to undergo the extensive surgery and HIPEC treatment to save his life.

It's here that fiction becomes reality. Charles says that just before his cancer diagnosis, he had finished writing his novel, Gabriel's Creek. The story revolves around a man who faces learning he is terminally ill. Charles says he had never imagined that his future would hold the same challenges as the main character. He admits that there were few edits to the novel, so perhaps he was unknowingly preparing himself for what lay ahead, he says.

Watch the video below as Charles shares his story.


HELPFUL LINKS

Tags: appendiceal cancer, Arizona, cancer, Charles Livingston, Dr Camoriano, Dr Wasif, HIPEC, John Camoriano, mayo clinic, Nabil Wasif

June 24th, 2014 · Leave a Comment

Second Opinion Leads to a Second Chance at Sight

By Hoyt Finnamore

Mayo Clinic patient Audrey Dean.Audrey Dean has been a lifelong advocate for social justice. After a notable career in social work, she earned a law degree and became senior counsel for the Alberta Human Rights Commission in 1992. At age 75, she is still arguing cases — some before the Supreme Court of Canada. “It’s fortunate that the government of Alberta doesn’t have mandatory retirement,” she says wryly.

The Alberta government had no intention of ending Audrey's career. But in 2009, it looked as if failing eyesight might. The crusading lawyer, who had always had perfect vision, began having trouble reading and driving.

She consulted with a local ophthalmologist, who diagnosed cataracts and recommended surgery to remove them. But unconvinced of the diagnosis, Audrey sought a second opinion at Mayo Clinic in Arizona.

This wasn’t her first experience with Mayo Clinic. Years earlier, her husband had consulted physicians there after learning he had cancer. And she had been seen doctors at Mayo about her own hearing loss — the result of radiation therapy for non-Hodgkin’s lymphoma. When she began having eye problems, she felt Mayo Clinic was the obvious choice.  [...]

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Tags: Dr Joanne Shen, International Patients, Macular Degeneration, Mayo Clinic in Arizona, Ophthalmology, Patient Stories, Vision Loss

June 20th, 2014 · Leave a Comment

Patient with “Double Trouble” Diagnosis Finds Answers at Mayo Clinic

By Paul Scotti

67-year-old Kendall Schwindt of Sun City, Florida, a retiree who spent 26 years with Walmart and who has remained active playing golf and riding his motorcycle.

Being diagnosed with multiple myeloma, a serious blood cancer, is difficult enough to accept. But being told that you also have a rare hematologic condition called amyloidosis — a disorder that could prevent you from receiving the bone marrow transplant necessary to combat your myeloma — could put anyone’s strength to the test.

Such was the case for 67-year-old Kendall Schwindt of Sun City, Florida, a retiree who spent 26 years with Walmart and who has remained active playing golf and riding his motorcycle. After experiencing a sudden illness in March 2013 while visiting his son, Schwindt knew something wasn’t right. After visiting his family doctor, he was told he had a very high creatinine level in his blood and was sent to a local nephrologist for a kidney biopsy.

His diagnosis — multiple myeloma, a cancer of the plasma cells, a type of white blood cell present in bone marrow. Plasma cells normally make proteins called antibodies to help the body fight infections. But that wasn’t only devastating news Schwindt would receive. [...]

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Tags: amyloidosis, BMT, bone marrow transplant, Dr Taimur Sher, Kendall Schwindt, kidney, MayoClinicFL, multiple myeloma, nephrology, patient story

June 11th, 2014 · Leave a Comment

Near-death experience brings second chance, new calling

By Hoyt Finnamore

Nancy Capelle with emergency medical technician Mike Szumagala, whose quick actions helped save her life.

Nancy Capelle with emergency medical technician Mike Szumagala, whose quick actions helped save her life.

On May 14, 2011, Nancy Capelle, a wife and mother of two young daughters, clinically died at the age of 40. She suffered spontaneous coronary artery dissection (SCAD), a condition that blocks blood flow to the heart causing a heart attack, abnormalities in heart rhythm and sudden death. But thanks to the quick actions of a paramedic, she is alive today to tell her harrowing story of life and death.

What was so hard for Nancy to comprehend following her medical emergency, she says, was that in a blink of an eye and without warning, healthy young women can be stricken by SCAD and die. Yet it didn’t appear from her research into the condition that the medical community was actively researching the tragic phenomenon. Perhaps it was because it was considered so rare that support for such a study would be difficult to find, she thought, or that finding enough SCAD survivors would be even more problematic.

Then Nancy came across an article in the Aug. 30, 2011, edition of The Wall Street Journal titled, “When Patients Band Together -- Using Social Networks To Spur Research for Rare Diseases; Mayo Clinic Signs On.” For Nancy, this article changed the dark face of SCAD dramatically, and she would find herself and many other young women just like her able to see daylight again. [...]

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Tags: Cardiovascular Diseases, clinical trials, Dr Sharrone Hayes, heart attack, heart disease, SCAD, social media

June 6th, 2014 · Leave a Comment

Coping with a Rare Disorder: Cronkhite-Canada Syndrome

By Susana Shephard

2014-06-27David Hirschy of Prescott, Arizona, has worn many hats  from record producer to chef to silversmith. In fact, his love of food made him think something was wrong a few years ago when he lost his sense of taste. He began to have other symptoms, too, which led him to Mayo Clinic in Arizona where he was diagnosed with the extremely rare Cronkhite-Canada syndrome  so rare that there have been less than 500 cases reported in the past 50 years.

In the following video, David and his Mayo physicians, Lucinda Harris, M.D., gastroenterologist, and Giovanni De Petris, M.D., pathologist, share his story.

 


HELPFUL LINKS

Tags: Arizona, Cronkhite-Canada, Cronkhite-Canada syndrome, David Hershey, David Hirschy, Dr De Petris, Dr Harris, Gastroenterology, Giovanni De Petris, Hirschy, Lucinda Harris, pathology, rare disease, rare disorder

June 4th, 2014 · Leave a Comment

Untangling a complex medical challenge

By Hoyt Finnamore

Amy Supergan with family members in Sienna, Italy.Amy Supergan has battled a host of difficult and painful disorders. Now she's found a way back to enjoying her life and her family.

In the summer of 2013, Amy Supergan took a trip to Italy. That may not sound extraordinary, but there was a time when being able to travel and enjoy a vacation with her family seemed like an impossible goal.

Amy faces a range of challenging medical problems, but at the top of that list is pain so debilitating she was forced to quit her career and give up an active lifestyle. But through the care she has received at Mayo Clinic and her participation in an innovative clinical research trial, Amy has found a renewed ability to manage her pain, and enjoy friends and family when she is able.

"Although I may never ski again or be back at work, with the help of all of my doctors at Mayo, I am now able to live independently with some assistance," she says. "I have found happiness in being more relaxed and appreciating some of the smaller things in life. I don’t feel like I’m missing out on life as I did before." [...]

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Tags: chronic pain, clinical trials, Dr Daniel Lachance, Neurology & Neurosurgery, Patient Stories, Trigeminal Neuralgia, Dr Kendall Lee

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