After a career dedicated to caring for patients with cancer, Nancy Drourr expected retirement to be the start of a new chapter. However, when troubling health issues emerged, she had to put her plans on hold.

Nancy turned to Mayo Clinic, where a care team uncovered a rare and complex disease called sarcoidosis. Now, with answers, Nancy has resumed the pursuit of a lifelong goal and wrote a letter to her care team thanking them for giving her hope.

Watch: Science of angels': A mother's thankful letter for team who diagnosed rare disease

Journalists: Broadcast-quality video pkg (2:13) is in the downloads at the end of the post. Please courtesy: "Mayo Clinic News Network." Read the script.

"I invested in a very rewarding career taking care of cancer patients. I believed that a big part of my life included service above self," says Nancy.

After retiring in 2022, Nancy noticed changes in her health. A lingering rash, fatigue and short-term memory challenges led to two years of tests and appointments with physicians near her home in Tampa, Florida.

"Being a patient was a new position for me," says Nancy. "I took care of patients, and I take care of people. I felt I needed more support than what I was getting."

When bloodwork in 2024 suggested Nancy may have a severe kidney condition, she turned to Mayo Clinic.

"When I saw the MRI and the results, there was a concerning finding, which was bone lesions and spleen lesions, and to the radiologist, it was concerning," says Dr. Fouad Chebib, a Mayo Clinic nephrologist. "We needed to figure out in a timely manner the source, if it's cancer, but otherwise it could be an infectious process or other autoimmune disease."

Sarcoidosis diagnosis

A biopsy ruled out cancer, but did confirm a diagnosis of sarcoidosis, an inflammatory disease that affects approximately 200,000 people in the U.S.

"In the case of Nancy, it was quite severe with multiple organs being involved, from skin to bone to spleen to many other organs, and it significantly affected her life," says Dr. Chebib.

Treatment plan

While there is no known cure for sarcoidosis, Nancy's care team, including experts in rheumatology, oncology, infectious diseases and other areas, developed a treatment plan to manage her disease.

"It was within my power now to navigate this disease and not give up on the things that brought me such joy in this life," says Nancy. "Dr. Chebib was my angel, and he made sure I had everything I needed to get answers."

"I'm passionate about making sure that the disease does not dictate the lives of my patients, getting to the bottom of the problem, and making sure we get the answers to things that potentially have not been answered elsewhere," says Dr. Chebib.

Nancy receives weekly treatment and regular follow-ups to measure progress. She's also given more thought to her textile design business. The dream influenced by her grandmother decades ago was put on hold to focus on her health. 

Nancy's journey also inspired her to write a letter to her care team titled "The Science of Angels," in which she shares her gratitude for the diagnosis and treatment options.

"I will forever remember how deeply the science of angels impacted my life and those of my loving sons," Nancy reads. "Thank you for instilling hope and a medical path forward in the treatment of my rare and complex disease."

The post (VIDEO) ‘Science of angels’: A mother’s thankful letter for team who diagnosed rare disease appeared first on Mayo Clinic News Network.

Before the sun rises at his home near Orlando, Florida, Rakesh Parekh, M.D., is already making the most of the day. He reviews patient notes and exercises before joining his wife, Tejal Parekh, in preparing their children for school. Time means a great deal to Dr. Parekh.

In 2020, he was diagnosed with amyotrophic lateral sclerosis (ALS) after muscle weakness began to affect his movement. ALS is a nervous system disease that affects nerve cells in the brain and spinal cord. Worsening over time, ALS affects control of the muscles needed to move, speak, eat and breathe.

Watch: Dr. Rakesh Parekh's story

Journalists: Broadcast-quality video pkg (2:16) is in the downloads at the end of the post. Please courtesy: "Mayo Clinic News Network." Read the script.

"You get this diagnosis, and, you know, within three to five years, you're no longer," says Dr. Parekh.

He was familiar with the disease long before his own diagnosis.

"My father lived with ALS," says Dr. Parekh. "I know time is of the essence."

Initially working with a care team closer to home, Tejal and Dr. Parekh were determined to find a way forward to preserve his quality of life and possibly help others, including their children, who have a chance of inheriting the gene mutation. The couple began messaging physicians, researchers and friends around the world. That's when they learned about the work of Dr. Bjorn Oskarsson, a Mayo Clinic neurologist.

"Dr. Oskarsson was recommended to us by a friend, and it was like finding a diamond in the rough," says Tejal Parekh.

A personalized approach

Dr. Oskarsson and colleagues at Mayo Clinic have spent their careers looking for answers and options for people diagnosed with ALS. A multidisciplinary care team met with Dr. Parekh in May 2021 and began tests to determine the best way forward.

"We worked with our outside partner to develop an individualized treatment made just for him," says Dr. Oskarsson.

The therapy aims to stop protein production by targeting the gene mutation and halting the progression of the disease. After nearly two years of testing and preparations, Dr. Parekh's first treatment was an injection in his spine in April 2024.

"He is the first person in the world to have received this treatment," says Dr. Oskarsson.

He would repeat the trip from Orlando to Jacksonville for the next two months, then placed on a three-month dosage.

"More than just ourselves, this would be a step forward for all the other people getting diagnosed with ALS; it would be something for them, hope," says Tejal.

One year after treatment started, the results are exciting to the Parekhs and Dr. Oskarsson.

"This is something that is truly new, and one day we will get there for everyone," says Dr. Oskarsson. "And when that happens, there's nothing that compares. It's a beautiful thing."

Back home, Dr. Parekh reflects on how this treatment has changed his outlook. His 25 years working in healthcare did not prepare him for what it would be like to receive care, let alone a therapy that may benefit his children one day.

"Not only has it made an impact on our lives, but honestly, it's made an impact on the way I practice because I realize now what patients need beyond healthcare," says Dr. Parekh.

The post (VIDEO) Florida dad receives first-in-world ALS treatment appeared first on Mayo Clinic News Network.

When Charnel Golis-Tabag picked up her sister from the airport in her home state of Hawaii, she didn't expect to hear that her sister's kidney function had dropped below 11%. That moment changed everything. "She told me she was on the transplant list," Charnel recalls. "Two days later, I called Mayo Clinic to start the living kidney donation process."

Charnel had seen too many family members endure the exhausting cycle of dialysis — three times a week, hours at a time. "They were tired, their veins were shot, they couldn't carry their grandchildren," she says. "I didn't want that for my sister."   

The power of living donation

"Living donor kidneys are great options for people waiting for a transplant," says Dr. Carrie Jadlowiec, surgical director of Kidney Transplant at Mayo Clinic in Arizona. "They have a shorter waiting period, fewer complications, and the kidneys function longer than deceased donor kidneys."

For Charnel, knowing that her sister could live a longer, healthier life with a living kidney solidified her decision to donate. Despite her family's concerns for her own health, she was committed. "I believe we need to start with educating young Native Hawaiian people about living a healthier lifestyle," she says. "In our ohana community, we can reclaim our health," she says.  

A donor chain of hope

For Michelle Gabriel, her younger sister's diagnosis was a turning point. "We asked each other, 'Can we do this? Will I be a match? What will it cost?' There were lots of questions and no answers at first," Michelle says.

She turned to Mayo Clinic, the National Kidney Foundation and the National Donate Life Registry. "These resources are fantastic and easily available online. Beyond online, our transplant coordinators walk patients through every step of the process," explains Dr. Ty Diwan, transplant surgeon at Mayo Clinic in Rochester, Minnesota. "We connect with patients from anywhere in the world via the portal and virtual appointments."

Michelle wasn't a match to her sister, but that didn't stop her. She joined a paired exchange program, creating a donor chain that benefited multiple families. No longer a question but a statement, "We can do this," became the sisters' ongoing mantra. "From that moment, we were all in. I saw the bigger picture: three people received kidneys that day," says Michelle.  

A husband's promise

For Albert Harris, June 20, 2024, is a date he'll never forget — it's the day he donated his kidney to his wife, making her "officially his other half," he jokes. "When she got sick, we got sick. I understood the marital vows, in sickness and in health. She's my partner in everything, and I look forward to having her around for a very long time."

Though friends and family worried about his health, Mayo Clinic's transplant team provided the reassurance he needed. He learned he could return to his normal life within weeks and give his wife the chance at a healthier, longer life.

Watch video: Donors who give hope and healing

Bridging the gap

Nearly 60% of people on transplant waiting lists come from minority communities, while about 30% of donors are people of color. This gap makes awareness and education critical — especially during Minority Living Donor Awareness Month, which highlights the need for diverse donors to help reduce disparities in transplant access. 

"Blood types and certain HLA, or antibodies, tend to correlate with various ethnic groups," says Dr. Shennen Mao, transplant surgeon at Mayo Clinic in Florida. "It is not directly related to a particular minority group; however, organs will end up with someone of a similar background because the better matched an organ is, the more longevity that organ has."

A shared legacy of hope

For Albert, Charnel and Michelle, living kidney donation was about more than surgery; it was about love, family and community. "It wasn't just a gift to my sister," Charnel says. "It was a gift to our entire family."

"You become someone's miracle," Michelle adds. "That person is someone's parent, sibling, friend. You give hope to everyone who loves them."

In most states, signing up to be a donor after death can be done online or when registering for a driver's license or identification card. For information on living donation, view Mayo Clinic's Living Donor Toolkit, contact the recipient's care team, or a transplant center. 

Comprehensive care at Mayo Clinic

Living kidney donation is a safe, medically supported procedure, with most donors resuming their lives within weeks. Mayo Clinic provides end-to-end care, including:

• Expert evaluation and surgery from leading transplant specialists.
• Financial coordinators to assist with travel, lodging and lost wages.
• Virtual consultations and access to resources anywhere in the world.
• Support and follow-up care for living donors.

Related posts:

• Mayo Clinic Minute: Why diverse organ donors are needed
• Mayo Clinic Minute: Become an organ donor and save lives

The post A living legacy: Donors who give hope and healing appeared first on Mayo Clinic News Network.

Kenneth Adams understands the importance of love, resilience and family. After his wife's passing in 2022, Adams reconnected with a lifelong friend, whom he had known for nearly 50 years. Kenneth and Susan Kidd eventually fell in love, and they were committed to building a life together.

"We love to travel and spend time with family — we wanted our relationship to be an example for our grandchildren. And to us, marriage was the next step," Adams said.

While making plans for a wedding in early 2025, Kenneth became ill and was diagnosed with sepsis. His complex condition required coordinated care, so the team at Mayo Clinic developed a plan: antibiotics administered intravenously every day for six weeks. Instead of staying in the hospital for the duration of the treatment, Kenneth's care team determined he was a candidate for Mayo Clinic's Advanced Care at Home program.

Going home

Advanced Care at Home offers patients high-acuity care, delivered in the comfort of their home. With around-the-clock access, advanced technology and a dedicated in-home care team, patients receive comprehensive treatment while minimizing stress and disruption to daily life. 

"With Advanced Care at Home, we can treat, monitor and communicate with patients as we would in a hospital setting, without recreating the feeling of being in a hospital setting," says Dr. Michael Maniaci, director of Advanced Care at Home.

For Kenneth, receiving treatment at home allowed him to maintain his routine, enjoy meals and sleep without interruption. 

“The program provided everything you would need in a hospital but with the comforts of home and closeness of family," Kenneth says. "They had the procedures down, the infrastructure and the systems in place — it was a dream come true."

As the end of his treatment neared and his strength improved, Kenneth and Susan began thinking about a wedding ceremony again.

A wedding between treatments

On May 19, 2025, Kenneth and Susan invited a pair of close friends and a pastor to their Ponte Vedra, Florida, home. The couple was married in their backyard, and just an hour after saying "I do," Kenneth received one of his daily treatments.

"Getting married was a goal for Mr. Adams, so as his care team, we made sure he could achieve that goal safely and on his terms," Dr. Maniaci says.

Kenneth credits Advanced Care at Home with making the wedding possible. He was discharged from the program a week later with no signs of sepsis. 

“People heal better at home," he says. “I feel that I'm living proof of that. There was no burden on my family — the team handled everything – and by being at home, I could get married,” Kenneth says.

By late July, Kenneth was well enough to resume another passion: travel. A trip that had been postponed earlier in the year was back on the calendar as a honeymoon. Looking ahead, Kenneth is preparing for an annual family trip in October. He continues to live with purpose and gratitude. 

“I want to do what I can, while I can,” Kenneth says. "I can do so much more with my health restored."

The post How Advanced Care at Home helped make Kenneth Adams’ wedding day possible appeared first on Mayo Clinic News Network.

When Dr. Bobby Mukkamala found himself on the other side of the exam table, he relied on the cutting-edge surgical techniques at Mayo Clinic to get him back to his professional work. 

While presenting at a professional meeting, Dr. Bobby Mukkamala, normally an eloquent speaker, began speaking incoherently for about 90 seconds. 

"Given my age of 53 at the time, I thought it was a 'senior moment,'" says Dr. Mukkamala, an otolaryngologist and head and neck surgeon from Flint, Michigan. 

His colleagues suspected he was having a stroke and convinced Dr. Mukkamala to go to a nearby emergency department for evaluation. Doctors suggested he may have had a transient ischemic attack, or ministroke. They recommended an MRI when he returned home.

That scan revealed something far more serious: a brain tumor. His journey as a patient had begun — and it would ultimately lead him to Mayo Clinic. 

Finding the right brain cancer care

After sharing the news with his family, Dr. Mukkamala tapped into his professional network. "Within a week of my diagnosis, I had half a dozen Zoom calls with neurosurgeons around the country," he says. "They were all wonderful with similar but slightly different perspectives on how to approach my case."

One call, however, stood out — his conversation with Dr. Ian Parney, (pictured here) a neurosurgeon at Mayo Clinic in Rochester, Minnesota and member of Mayo Clinic Comprehensive Cancer Center.

Dr. Parney knew the tumor was large, complex and near critical speech areas in the brain. "It was important to Dr. Mukkamala to protect those areas," says Dr. Parney.   

Unlike other surgeons who recommended two brain surgeries, Dr. Parney recommended a single awake craniotomy with speech mapping. During the procedure, the patient answers questions, and brain activity is monitored. This helps surgeons avoid damaging parts of the brain responsible for speech. His extensive experience — about 200 similar brain tumor procedures per year — gave hope to Dr. Mukkamala that the single operation was the best choice.

"Dr. Parney spent time answering every question we had," Dr. Mukkamala says. "That is what healthcare should be. As soon as we got off the call, my wife and kids said, 'That's it. That's where you're going.'"

Using advanced surgical techniques to guide care

In December 2024, Dr. Mukkamala underwent an awake craniotomy with speech mapping. The surgical team also used an intraoperative MRI. This advanced imaging technique provides real-time, high-resolution MRI scans while the surgery is in progress. 

"We do an MRI during the procedure to get the most accurate image so that we can remove the tumor safely," says Dr. Parney. Integrating functional imaging into image-guided systems in the operating room is a technique that Dr. Parney's team develops and tests to improve patient safety. He also correlates these techniques with novel strategies such as intraoperative electrophysiological mapping (using electrodes or electrical simulation to identify and preserve functions) and fluorescence-guided resection.

In Dr. Mukkamala's case, as part of the speech mapping, Dr. Nuri Ince, a professor of neurosurgery and biomedical engineering at Mayo Clinic, provided a novel electrocorticography technique that showed critical areas of function without requiring direct cortical stimulation (electrical signals to the brain's outer layer), as is usually necessary.

Dr. Parney and his colleagues were able to remove more than 90% of Dr. Mukkamala's tumor without damaging the speech areas. Six weeks after surgery, he was once again speaking professionally and confidently to large groups.

Coordinating multidisciplinary cancer care

Dr. Mukkamala's cancerous brain tumor was a low-grade IDH-mutant astrocytoma. This type of brain tumor arises from astrocytes (a type of glial cell in the brain) and carries a mutation in the IDH (isocitrate dehydrogenase) gene. 

After surgery, Dr. Mukkamala met Dr. Ugur Sener, a neuro-oncologist at Mayo Clinic, who prescribed a new targeted drug to treat any remaining cancerous cells. The less toxic therapy allowed Dr. Mukkamala to avoid chemotherapy and radiation, which are standard treatments for brain cancer that can cause side effects such as fatigue and nausea. 

"We've built one of the largest brain tumor practices in the world here at Mayo," Dr. Parney says. "We have the right resources and the right teams in place to provide cutting-edge therapies and holistic care."

Bringing new 'tumor wisdom' to the bedside

While his life today looks much like it did before his diagnosis, Dr. Mukkamala says his perspective is forever changed by his experience. "I used to be more science than emotion, but I've learned there's room for both," he says. 

Dr. Mukkamala was alone when he received the news that he had cancer, much like most of his patients were when he delivered hard news. "It never occurred to me before that it was a problem to share a diagnosis when a patient was alone," Dr. Mukkamala says. He now tries to ensure his patients have support. 

It's one of the many lessons he attributes to "tumor wisdom." "My brain may be a little smaller," says Dr. Mukkamala, "but I think it's happier and wiser."

The post How advanced surgical skills returned a physician to the podium after brain cancer appeared first on Mayo Clinic News Network.

After more than 22 months at Mayo Clinic Children's, 13-year-old Ava Weitl went home to Iowa. She and her family were met with tears and cheers as dozens of members from her care team, who are now considered friends of the family, said goodbye and wished her well. 

This was a day Ava had been looking forward to after a long journey with heart failure, two lifesaving extracorporeal membrane oxygenation (ECMO) therapies, a heart transplant, kidney failure and a kidney transplant. 

Watch: 13-year old Ava Weitl leaves Mayo Clinic Children's after a 22-month hospital stay

Journalists: Broadcast-quality natsound video is in the downloads at the end of the post. Please courtesy: "Mayo Clinic."

Born with hypoplastic left heart syndrome (HLHS), a life-threatening condition where the left side of the heart is severely underdeveloped, Ava faced three open-heart surgeries before she would reach her 5th birthday. Within 90 minutes of her birth, her first surgery was performed. Her second surgery was completed months later, but the third, typically required for HLHS patients between the ages of 3 and 4, was not possible due to other medical concerns. 

For a handful of years, Ava's care team monitored her to see what her body would do. During that time, Ava felt good and was "defying the odds," as her mom, Christina DeShaw, would say. 

It was in 2021, during third grade, when Ava began to show signs of her heart and lungs struggling. While cardiac catheterization improved the blood flow to her lungs, it was a temporary improvement, and by early 2023, doctors determined a heart transplant was her only option.

Officially listed for a heart transplant in February 2023, Ava's condition worsened, leading to hospitalization at Mayo Clinic in September 2023. That hospital stay was the start of her long journey of constant monitoring and tests, and it wasn’t easy on her family as they navigated life split between Minnesota and Iowa. 

In December 2023, Ava's condition took a critical turn. Ava was placed on life-sustaining ECMO, which provides heart and lung support when those organs are failing. Then, Feb. 26, 2024, the call came: a donor heart became available. The surgery was successful, but postoperative challenges arose.

Weeks later, complications with her lungs led to a return to ECMO for three months. She also needed a tracheostomy placed. While trying to save her lungs, her kidney function began to fail, leading to another gift of life — a kidney transplant on Jan. 25, 2025, thanks to a donation from her uncle through a kidney exchange with the National Kidney Registry. 

"She's a walking miracle," her mother says. "We can't even wrap our heads around what she's been through."

Ava is excited to be home with her parents, Christina and Brad, her twin brother, Aiden, and her younger brother, Miles. She says she looks forward to hanging out with friends, going back to school and having a barbecue with her family. 

The post (VIDEO) 13-year-old Ava is home with a new heart, kidney following a 22-month hospital stay  appeared first on Mayo Clinic News Network.

In April 2023, CV Rao had just returned from a work trip in Europe when he started experiencing abdominal pain on his right side. His wife, a doctor, recognized that he needed to see his primary care physician for an ultrasound scan. 

When the ultrasound didn't show anything, CV's care team ordered a CT scan. The results were alarming — a 7 centimeter tumor, the size of a large peach, was in his liver. 

"It was a shock to the system," CV recalls. 

The initial diagnosis suggested intrahepatic cholangiocarcinoma, a rare and aggressive cancer of the bile ducts.

CV quickly received a PET scan, an MRI and a biopsy at a local hospital which confirmed those suspicions. Within eight days, CV was undergoing chemotherapy to shrink the tumor so he might be eligible for surgery.

After six cycles of chemotherapy, the tumor was reevaluated. The good news was that the cancer was responsive to chemotherapy, and the tumor had shrunk by about 50%. Unfortunately, because the tumor surrounded major blood vessels, local surgeons still deemed it inoperable.

Seeking a second opinion

Determined to explore all options, CV sought a second opinion at Mayo Clinic. 

"I was working on 3D printing investments and kept running into Mayo's innovative approaches," he explains. "Everywhere I looked, they had this 3D printing effort where the surgeons were able to visualize what they were operating on using 3D printed organs."

This led him to believe that Mayo Clinic could offer a solution.

A new hope

Six months after diagnosis, CV and his wife, Madhavi, sat across from Harmeet Malhi, M.B.B.S., a hepatologist at Mayo Clinic in Rochester.

"We want to give every patient every chance. Undergoing surgery was his best chance at being tumor-free."

Harmeet Malhi, M.B.B.S.

After reviewing his imaging and personalized treatment plan with Dr. Malhi, CV and his wife met with Patrick Starlinger, M.D., Ph.D., a hepatobiliary and pancreas surgeon. 

"Dr. Starlinger looked at me and said, 'You came to the right place. We can help you with this,'" CV remembers.

All three liver veins appeared to be involved. This type of tumor usually is not removable because there must be at least one vein to drain the liver, according to Dr. Starlinger.

"We told him to continue chemotherapy to maximize his response, aiming to get the tumor even smaller. And then we planned for advanced, complex liver surgery."

Patrick Starlinger, M.D.

Although CV understood this would be a high-risk procedure, he remembers feeling reassured after speaking with Dr. Starlinger.

"Dr. Starlinger looked at his fellows and said, 'Would you say this is routine?' And they all said 'Yes, it's a routine surgery for us,'" CV says.

As a native of Austria, Dr. Starlinger explains, "In German, we have a word that means saying 'yes' to life, 'lebensbejahend,' and that's how CV approached this. Both CV and his wife had such positive attitudes and a willingness to fight this with all they had."

CV believes the same can be said of Dr. Starlinger's approach to his case. 

"The very first day, Dr. Starlinger walked in with a positive attitude, which is one of the things that you realize you absolutely need to get through things like this," CV says.

Resecting the unresectable

CV's surgery was scheduled for November 22, 2023, the day before Thanksgiving. 

To prepare for the operation, Dr. Starlinger turned to a 3D printed model of CV's anatomy, just like the ones that had led CV to Mayo Clinic.

"3D models are incredibly helpful in complex surgical procedures because they allow for optimized surgical planning prior to the actual surgery," Dr. Starlinger explains.

At 6 a.m. on Nov. 22, CV was taken back to the operating room for the complex, 4.5-hour surgery. 

"We carefully dissected through the liver until we approached the right hepatic vein, which was really the critical portion of CV's operation," Dr. Starlinger says. "We had everything prepared to reimplant the only remaining liver vein, but with meticulous precision, using an ultrasound dissection device, we were ultimately able to peel the tumor off the majority of the right hepatic vein and perform a primary repair of the vessel."

Dr. Starlinger and the surgical team removed roughly 50% of CV's liver, along with the entire tumor. The surgery was a success.

Experiencing cherished milestones

Nearly two years after his diagnosis, CV is returning to the activities he loved. He has resumed skiing, attended his younger son's robotics competitions, and even traveled to Switzerland and Austria with his wife. 

"I can't wait to see my older son graduate and drop him off at college," he shares with a smile. "We are in a stage of life where a lot of life events are happening. It's amazing to do these things that are important to the family."

These moments, once clouded by uncertainty, are now cherished milestones.

Reflecting on his care at Mayo Clinic, CV expresses deep gratitude to the team that provided him with expert and compassionate treatment. 

"The Mayo Clinic staff is beyond what we've experienced elsewhere," he says. "During my seven days in the hospital, we interacted with many nurses, and through changes in shifts, it was just a uniformly amazing experience. Every, every single person we came in touch with was such a positive experience."

"We wish Dr. Starlinger the longest career possible because the number of lives he has and will save is incredible," he says. 

Related post:

• (VIDEO) A rare cancer. A rare weapon. Curtis Jackson’s inspiring story of survival

The post Resecting the unresectable: The right place, the right team  appeared first on Mayo Clinic News Network.

Fifty-four-year-old Chris Sams of Arizona has been living with coccidioidomycosis, more commonly known as valley fever, for nearly a decade. When his symptoms worsened and standard treatments failed, he turned to Mayo Clinic's Cocci Clinic in Arizona — one of the few centers in the country that treats the most advanced and complicated cases.

Now, on a more aggressive antifungal treatment, Chris says Mayo Clinic's multidisciplinary team approach has made all the difference.

Valley fever can be serious, especially when it spreads beyond the lungs. In rare cases, as it did with Chris, the coccidioides infection can reach the brain and cause neurological damage, requiring intensive treatments.

Watch: When valley fever spreads - Meet Chris and his complex case

Journalists: Broadcast-quality video (3:00) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

"I think I was biking up to 150 miles a week. I was biking quite a bit, lot of wind, lot of sand, lot of dust," says Chris.

That dust may have carried fungal spores that infected Chris with valley fever — a lung infection caused by breathing in spores that live in the soil but can become airborne.

"I was always sick. I was worn down. I lost a massive amount of weight. And that's really what threw us over the edge, is that something was going wrong," he says.

He ended up in the hospital.

"They put me in isolation floor because they didn't know if I had cancer, tuberculosis or if it was the continuance of valley fever," he recalls.

Tests confirmed it was valley fever, also known as coccidioidomycosis or cocci. The majority of people who get cocci recover well on their own, but in a small number of people, like Chris, the fungal spores can spread beyond the lungs, causing severe or even life-threatening symptoms.

"Less than 5% of people have it spread outside of the lung. It can go to many different places: bones, soft tissues and potentially the central nervous system. And, unfortunately, while it is a small percentage of people, when it does get into the central nervous system, it causes potentially devastating consequences," says Dr. Marie Grill, a Mayo Clinic neurologist.

In Chris' case, the spores had spread to his brain. That's when he sought help at Mayo Clinic's Cocci Clinic in Arizona, where a multidisciplinary team of specialists treats the most serious and complex cases of valley fever.

"Now we have our roadmap. We have a direction on where we're going — because otherwise, everything is just spiraling out of control," says Chris.

He began undergoing a special treatment delivered every few weeks right to his brain.

"It's an antifungal medication which can be delivered intravenously but can also be delivered directly into what we call the intrathecal space, which is essentially directly into the spaces where we have the spinal fluid," explains Dr. Grill.

The good news is doctors say Chris is showing signs of improvement.

"They think that there is an end in sight and hopefully we will wean off the intrathecal treatments. I mean, we've weaned it down to every two weeks," he says.

Doctors have yet to determine how long the treatments will need to continue, but Chris is confident he's heading in the right direction, with the right team.

"I have the best committed team around that talk to me, care about me, talk to me as a person and want me fixed."

While the Cocci Clinic cares for patients with serious cases of valley fever, Mayo Clinic is also advancing the field with a faster, more accurate test to speed up diagnosis and treatment.

Related post:

• (VIDEO) Faster diagnosis for valley fever: New test in development

The post (VIDEO) When valley fever spreads: Meet Chris and his complex case appeared first on Mayo Clinic News Network.

ROCHESTER, Minn. — While immunosuppressive medications are critical to prevent rejection of transplant organs, they also come with plenty of downsides. They can cause harsh side effects, like headaches and tremors, and increase the risk for infection and cancer. But what if there was a way to prevent organ rejection without using these medications?

That goal fuels the work of Mark Stegall, M.D., a longtime Mayo Clinic transplant researcher. He leads a team of researchers developing pioneering therapies to prevent organ rejection without the need for immunosuppression. A recently published study in the American Journal of Transplantation is offering hope for patients.

Using stem cells to prevent organ rejection

Mayo Clinic participated in the multisite phase 3 clinical trial detailed in the study. The goal was to see whether people who simultaneously received both a kidney and stem cell transplant from a closely matched sibling could discontinue all immunosuppressive medications after a year. The results were promising. The study found that 75% of participants were able to stop taking the medication for more than two years. At Mayo Clinic, three patients participated, with two off immunosuppression medications for over three years and one on a low dose.

"I've been involved in transplant research for more than 30 years, and we've done quite a few amazing things. But in the scheme of things, this research is right at the very top. It's been a goal — to be able to safely get transplant recipients off immunosuppression — for longer than I've been doing this. We're very excited about it," says Dr. Stegall, a co-author of the study.

The research being done across Mayo Clinic is part of a growing trend in transplant to explore ways to use cellular therapies to prevent organ rejection. It is also a cornerstone of Mayo Clinic's Transforming Transplant Initiative, which has the bold goal of ensuring everyone who wants a transplant can get one and to make transplants more successful.

To qualify for the clinical trial, the transplant recipients and donors needed to be siblings whose tissue types closely matched. The donor agreed to donate their stem cells in addition to their kidney to their sibling. The recipient receives the transplant, undergoes radiation and then receives the stem cell transplant. The goal was to wean recipients off immunosuppression medication after a year.

'Almost like the transplant didn't happen'

For Minnesota native Mark Welter, the results have been better than he imagined. Four years ago, he needed a kidney transplant due to polycystic kidney disease, an inherited condition that causes cysts to grow on the kidneys. The Mayo Clinic patient volunteered to be a part of the clinical trial in hopes of not having to worry about immunosuppression medication the rest of his life. His younger sister Cindy Kendall immediately stepped forward to donate a kidney and her stem cells to help her brother.

"Being able to see him get off those medications has been amazing," Cindy says. "He just gets to live his life to the fullest. He has been able to see both of his daughters get married and meet his grandchildren."

Watch: Inteview with Mark Welter, Cindy Kendall and Dr. Mark Stegall

Mark has not taken immunosuppression medication for more than three years.

"I feel fantastic. I actually feel like I did before the transplant, which has been the greatest thing," Mark says. "It's almost like the transplant didn't happen."

There is still plenty of work to be done to advance this research. This clinical trial only involved siblings with closely matching tissue types. Researchers want to know if stem cell transplants can prevent rejection in recipients paired with a less closely matched donor.

"Even in closely matched siblings, immunosuppression is needed lifelong. We have seen stopping medications even at eight to 10 years post-transplant leads to rejection. Our goal is to find ways to reduce or stop immunosuppressive medications after transplant so patients can have longer lasting kidneys with fewer side effects," says Andrew Bentall, M.B., Ch.B., M.D., a Mayo Clinic transplant nephrologist.

Journalists: Press kit, including b-roll, photos and interviews are available here. Clinical trial participants and Mayo researchers are available for interviews. Please contact newsbureau@mayo.edu to schedule.

###

About Mayo Clinic
Mayo Clinic is a nonprofit organization committed to innovation in clinical practice, education and research, and providing compassion, expertise and answers to everyone who needs healing. Visit the Mayo Clinic News Network for additional Mayo Clinic news.

Media contact:

• Kelley Luckstein, Mayo Clinic Communications, newsbureau@mayo.edu

The post (VIDEO) Eliminating the need for lifelong immunosuppressive medications for transplant patients appeared first on Mayo Clinic News Network.

Curtis Jackson was living his dream life — a loving and supportive wife, three wonderful kids, and a future that looked as bright as could be.

Then, one day, without warning, the dream was shattered.

At only 46, Curtis was diagnosed with cholangiocarcinoma, one of the deadliest and most aggressive forms of cancer. It's a silent killer that strikes the liver. It is often diagnosed in later stages, leaving patients with few treatment options and little time to live.

The Jackson family turned to Mayo Clinic, where a team of experts fought the cancer with a weapon rarely used in the battle against this aggressive form of cancer.

Watch: A rare cancer. A rare weapon. Curtis Jackson's inspiring story of survival.

Journalists: Broadcast-quality video (2:17) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

The rare cancer

Years before his cancer diagnosis, Curtis was diagnosed with primary sclerosing cholangitis (PSC). PSC is a chronic liver disease that causes inflammation and scarring to the bile ducts, which work with the liver to help with digestion.

PSC put the Arizona man at higher risk for liver cancer, requiring him to get regular diagnostic screenings. As with most forms of cancer, but particularly cholangiocarcinoma, doctors say early detection is key to improving patient outcomes.

However, with cholangiocarcinoma, there are often no warning signs or symptoms alerting patients of the need to consult with their doctor about getting screened, until it's too late. In Curtis' case, the cholangiocarcinoma was detected in one of his routine screenings at Mayo Clinic, which doctors say likely helped save his life.

"It's a very rare cancer that tends to grow unnoticed," says Dr. Tanios Bekaii-Saab, an oncologist with the Mayo Clinic Comprehensive Cancer Center in Arizona. "If the cancer gets to the point where it's too advanced for surgery or transplantation, universally this is a noncurative or noncurable cancer."

The rare weapon

Doctors say a liver transplant can sometimes be an option for some patients. However, not many transplant centers perform liver transplants on patients diagnosed with cholangiocarcinoma. Mayo Clinic is one of the few centers that do offer liver transplantation for some patients who meet certain criteria.

In Curtis' case, doctors at Mayo Clinic determined a liver transplant was his best chance for survival.

"It is a unique form of therapy that is based on research that started at Mayo Clinic in Rochester, Minnesota," says Dr. Bashar Aqel, director of the Mayo Clinic Transplant Center in Arizona.

"We developed some protocols that helped us improve the outcome of transplant in these patients, and without these protocols, a lot of patients with this type of cancer would not make it to transplant," says Dr. Aqel.

The treatment

Curtis first underwent chemotherapy and radiation at Mayo Clinic. He was then placed on the liver transplant waiting list for a donor organ. While waiting, Curtis says he kept his focus on his family.

"I spent all the time I could with my wife and kids, like basketball practices, homework, anything we could do to help our kids," says Curtis.

When Curtis got the call a donor organ was found, he immediately reported to Mayo Clinic to undergo his lifesaving liver transplant. The surgery was a success. Four weeks later, Curtis was back at home with family recovering well and feeling a deep sense of gratitude for his organ donor and his team at Mayo Clinic.

"Thank you because now I get to see my daughters get married, go to college, I get to see my son live his dreams and go to college and get married," says Curtis. "I get to live and grow old with my wife. I can't say this enough to everyone, 'thank you.'"

"We're already observing excellent function from Curtis' new liver, with the majority of his liver tests returning normal results," says Dr. Aqel. "His recovery has been remarkably swift and impressive."

"A lot of love goes out to the people in that family," says Gwyn Jackson, Curtis' oldest daughter in reference to the organ donor's family. "They allowed us to have our dad back and we're so grateful because we love him so much."

Doctors at Mayo Clinic are monitoring Curtis' progress closely. Meanwhile, Curtis' future is back to looking bright, only now with even deeper gratitude in his heart.

"This truly is the gift of life," says Curtis.

Related stories:

• (VIDEO) Breathing easy thanks to the gift of life and new Mayo Clinic Lung Transplant Program in Arizona
• Breaking barriers: Helping Native Americans in need get the gift of life
• Jessie’s Journey
• (VIDEO) Harnessing the power of innovation and a patient’s will to survive

The post (VIDEO) A rare cancer. A rare weapon. Curtis Jackson’s inspiring story of survival appeared first on Mayo Clinic News Network.