Healthcare Delivery - Mayo Clinic News Network https://newsnetwork.mayoclinic.org/category/research/implementation-science/ News Resources Thu, 22 May 2025 16:50:04 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.1 Harnessing telehealth to enhance patient care https://newsnetwork.mayoclinic.org/discussion/harnessing-telehealth-to-enhance-patient-care/ Fri, 23 May 2025 13:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=402919 A recent Mayo Clinic study revealed how telehealth can be a powerful tool to enhance patient well-being when strategically applied in healthcare delivery. The study showed that patients who received remote monitoring support after discharge did significantly better and needed less follow-up care compared to patients without remote monitoring.  "This study explores the relationship between […]

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A recent Mayo Clinic study revealed how telehealth can be a powerful tool to enhance patient well-being when strategically applied in healthcare delivery.

The study showed that patients who received remote monitoring support after discharge did significantly better and needed less follow-up care compared to patients without remote monitoring. 

Aaron Spaulding, Ph.D

"This study explores the relationship between hospitals' implementation of telehealth services and the impact on patients' social needs," says Aaron Spaulding, Ph.D., a healthcare researcher at the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery and senior author of the study.  "The study aims to determine the effects on four key outcomes: better patient health, reduced hospital service use, lowered healthcare costs and enhanced community health."

The study also found that when patients used online therapy, they were much more likely to say their overall health in the community had improved compared to those who did not receive such services.

The study investigators say that the findings provide a closer look into telehealth's versatile ability to address social determinants of health and offer a path for future research into ways to enhance overall patient-centered care.

"There has been significant research identifying gaps in healthcare due to social determinants of health,"

says Dr. Spaulding. "The publication team has explored various avenues to understand the barriers to access and areas that inadvertently worsen outcomes related to social determinants."

Dr. Spaulding notes that telehealth, when combined with in-person visits, has the potential to help create a more integrated approach to healthcare delivery, but says that it should be treated as a complementary tool and that any approach needs to be personalized.

"Different patients require varying levels of care, and while our systems are improving, some patients may benefit from telehealth, while others may prefer in-person care," says Dr. Spaulding.  "Additionally, a combination of approaches might be beneficial for certain individuals."

Looking ahead, the researchers emphasize the need to continue focusing on strategically and thoughtfully deploying telehealth services in patient care.

"We must continue to assess the most effective ways to use telehealth to benefit patients," says Dr. Spaulding. "This evaluation should consider both hospital-specific outcomes, such as readmissions and emergency department visits, as well as patient experience and patient-reported outcomes."

Review the study for a complete list of authors, disclosures and funding.

About Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery

The Mayo Clinic, Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, collaborates with clinical areas across Mayo to create and evaluate data-driven solutions to transform the health and healthcare experience for patients, staff and communities. It drives continuous improvement of Mayo Clinic as a learning health system, enabling safe, evidence-based, high-quality care.

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(VIDEO) When seizures don’t stop: The battle against drug-resistant epilepsy https://newsnetwork.mayoclinic.org/discussion/video-when-seizures-dont-stop-the-battle-against-drug-resistant-epilepsy/ Wed, 02 Apr 2025 17:30:44 +0000 https://newsnetwork.mayoclinic.org/?p=401236 For Anthony Maita, 'Buddy' is not just any other dog. "He's the best thing that's ever happened to me," says Anthony. It's no wonder, considering Buddy was right by Anthony's side during one of the most challenging times of his life — when Anthony began having epileptic seizures. Watch: When seizures don't stop: Anthony's battle […]

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Anthony Maita and his dog Buddy

For Anthony Maita, 'Buddy' is not just any other dog.

"He's the best thing that's ever happened to me," says Anthony.

It's no wonder, considering Buddy was right by Anthony's side during one of the most challenging times of his life — when Anthony began having epileptic seizures.

Watch: When seizures don't stop: Anthony's battle against drug-resistant epilepsy

Journalists: Broadcast-quality video (2:38) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

"I started having the seizures, noticeable seizures, and from there, it just started getting worse and worse," recalls Anthony.

It began after Anthony graduated from high school. He was making plans for his future and looking forward to attending college. That's when the seizures began.

Initially, the seizures were mild but quickly became more severe. "The experience (seizure) is like a loss of time, like a blank spot in your memory — like you're waking up without any recollection of what happened," says Anthony.

"The seizures were several times a week. His lips would be blue. His mouth would be blue," says Patricia Maita, Anthony's mother. "It so hard to see your child go through that and feel so helpless."

Doctors tried to manage Anthony's seizures with medication, but nothing worked. Eventually Anthony was diagnosed with drug-resistant epilepsy, or DRE.

In search of hope, Anthony's family turned to Mayo Clinic in Arizona.

Anthony during assesment with neurosurgeon Dr. Jonathon J. Parker at Mayo Clinic in Arizona

"Up to a third of patients who develop epilepsy during their life will become resistant to medication," explains Jonathon J. Parker, M.D., Ph.D., a neurosurgeon at Mayo Clinic who specializes in treating the most serious and complex cases of epilepsy, including DRE.

"These patients have tried at least two medications, and they're still having seizures. At that point, we know the chances of seizure freedom unfortunately become very low, and that's when we start looking at other options," says Dr. Parker.

A battle for millions worldwide

Anthony is one of approximately 50 million people worldwide diagnosed with epilepsy. It is one of the most common neurological disorders globally. It is characterized by recurrent unprovoked seizures caused by abnormal electrical activity in the brain.

Approximately 15 million people worldwide are diagnosed with drug-resistant epilepsy

Of those diagnosed with epilepsy, approximately 30%, or 15 million people, are considered medication-resistant. Uncontrolled seizures often rob many people of their ability to live and function independently.

While it is rare, seizures can lead to sudden unexplained death in epilepsy, or SUDEP. "We know that more frequent seizures mean the patient is at higher risk of SUDEP, so that's why we are very aggressive about treating epilepsy with all the tools we have available," says Dr. Parker.

Current treatment options for patients with DRE include surgical procedures such as brain resection to remove a portion of the brain tissue responsible for generating seizures. A less invasive procedure involves laser ablation therapy that pinpoints and destroys abnormal brain tissue. While often effective, these surgical approaches carry the risk of possible side effects, such as memory impairment, motor deficits and speech difficulties. 

Neuromodulation is another surgical approach that uses electrical or magnetic stimulation to interrupt abnormal neural activity without removing brain tissue.

Unlocking new hope for patients

Now, a growing number of scientists across the globe are part of an innovative trend in research, investigating novel ways to treat DRE. It involves the use of regenerative medicine as a "reparative" approach to help the brain heal. 

Dr. Parker is the lead investigator of the first-in-human clinical trial at Mayo Clinic which studies the use of implanted specialized inhibitory brain cells as a potential reparative treatment for DRE. Dr. Parker's clinical trial is underway in Arizona.

Dr. Parker and team during brain cell implant procedure at Mayo Clinic in Arizona

"This is an exciting time for regenerative medicine and the potential it may have for millions of people who suffer from the debilitating side effects of drug-resistant epilepsy."

Dr. Jonathon J. Parker, neurosurgeon and clinical trial lead investigator

Mayo Clinic in Arizona is one of 29 sites nationwide participating in the inhibitory brain cell implant clinical trial for patients with focal epilepsy, where seizures originate in a specific region of the brain. 

Anthony became Mayo Clinic's first patient to undergo the investigational brain cell implant. 

"We use a very minimally invasive technique where we inject the inhibitory cells through a pencil eraser-sized incision in the back of the head. Our hope is that, over time, these cells become part of the brain and help repair the neural circuitry, and reduce or prevent seizures without the side effects," says Dr. Parker. The cells are implanted in a one-time, single-dose procedure.

"Honestly, it was pretty easy," says Anthony. "I had no trouble with it." Anthony was discharged from the hospital the next day.

Doctors say it is still too early to determine whether the brain cell implant was effective, but they are hopeful.

Dr. Amy Z. Crepeau and Anthony after brain cell implant at Mayo Clinic

"Anthony has been doing great since the procedure," says Dr. Amy Z. Crepeau, a neurologist at Mayo Clinic. "We have a great deal of optimism in regard to the potential of this brain cell therapy. Developing a safe and effective, minimally invasive treatment that does not carry the possible negative side effects could be a game changer in treating patients with DRE and improving their quality of life."

Tabitha's life-long struggle to control seizures

Tabitha Wilson lives in fear, never knowing when or where the next seizure will strike.

The Florida resident was diagnosed with epilepsy at the age of 2. She was placed on medication that adequately managed her seizures — until the week before her high school graduation. 

Tabitha was diagnosed with epilepsy at the age of 2 Photo courtesy: Tabitha Wilson

"I was 17 years old sitting in history class when the seizure happened," recalls Tabitha. "They had to load me up in an ambulance in front of the whole school."

"It was traumatizing. Something I will never forget."

Tabitha Wilson describing her seizure during class in high school

Tabitha tried new types of medications, but the seizures only got worse.

"I fell down a flight of stairs, burned myself while cooking. I've completely blacked out and don't know where I am or who you are," says Tabitha. She was eventually diagnosed with drug-resistant epilepsy.

Tabitha underwent three brain surgeries to treat her DRE. Still, the seizures continued.

"I'll have good days and bad days. Some days, I'll have two, three, four seizures, back-to-back," says Tabitha.

Tabitha Wilson, drug-resistant epilepsy patient, FL
Despite the sudden return of her seizures just a week earlier, Tabitha walked proudly with her high school graduation class
Photo courtesy: Tabitha Wilson

Her uncontrolled seizures have robbed Tabitha of the ability to live independently. "I can't drive. I can't cook. I can't go swimming alone. I can't take a bath, only a shower and if someone is home with me," says Tabitha.

Watch: Tabitha Wilson shares what it's like to live with drug-resistant epilepsy.

Tabitha turned to Mayo Clinic in Florida where she learned about a clinical trial also investigating the potential of regenerative medicine as a possible treatment for DRE.

Dr. Sanjeet S. Grewaldirector of stereotactic and functional neurosurgery at Mayo Clinic, is leading a team of researchers studying the use of implanted stem cells in conjunction with deep brain stimulation for patients like Tabitha.

Deep brain stimulation is one of the most recent FDA-approved methods of neuromodulation therapy for epilepsy. Studies show that patients who undergo deep brain stimulation experience median seizure reduction up to 70% after five years. However, Dr. Grewal says it is uncommon for patients to become seizure-free. 

"Unfortunately, neuromodulation doesn't give us the seizure freedom we want, and that's why we are trying to combine deep brain stimulation with stem cell therapy to see if we can increase the efficacy of neuromodulation," he says. 

Dr. Alfredo Quinones-Hinojosa (left), Dr. Sanjeet S. Grewal (right) and team performing stem cell implant at Mayo Clinic in Florida Photo courtesy: Dr. Loizos Michaelides

Tabitha became the first patient to undergo the investigational treatment. Dr. Grewal says she is also the first person in the world to undergo surgery for deep brain stimulation and receive stem cell therapy in the thalamus in her brain as a potential treatment for DRE. 

Watch: Dr. Sanjeet Grewal, neurosurgeon, explains how Mayo researchers are leading a new trend in research for treating patients with drug-resistant epilepsy.

The clinical trial involves the use of mesenchymal stem cells, a type of adult stem cell that has anti-inflammatory properties. MSCs may also support tissue repair and healing. Further scientific research is needed to confirm their therapeutic potential in the field of regenerative medicine.

"There are some patients whose seizures are just much harder to treat with the technology we have today. Our hope is that by adding stem cells and their regenerative potential, we can increase treatment success."

Dr. Sanjeet Grewal, Neurosurgeon and Clinical trial lead investigator

The MSCs used in the clinical trial are derived from fat tissue and created at the Human Cell Therapy Laboratory at Mayo Clinic in Jacksonville, Florida under the leadership of Abba Zubair, M.D., Ph.D., a pioneer in cell therapy.

Dr. Zubair's research teams have developed a cost-effective method of producing MSCs for use in potential treatments for conditions such as stroke.

Dr. Zubair has also led innovative research, including sending stem cells to the International Space Station to investigate how microgravity impacts their growth.

"My mission is to discover ways to address problems that patients have been struggling with and find a solution for them.
I believe the future is bright. "

Dr. Abba Zubair, Pioneer in Cell therapy, Mayo Clinic in Florida

Dr. Zubair has several research projects scheduled to launch into space in 2025.

"MSCs are what we call multipotent, meaning they can differentiate into different cell types based on where they're placed. If they are placed near blood vessels, they can become blood vessel types. If they're placed by heart cells, they can become heart cell types," explains Dr. Grewal.

The hope is the MSCs eventually become neural or brain cell types and interact in the part of the brain where the seizures occur. "It's called paracrine signaling, where they're releasing signals to the brain tissue around them and interacting in a way to try to repair that tissue."

"I'm willing to try everything and anything to get some sort of control over these seizures because I've been living with this for so long."

Tabitha Wilson, Clinical Trial participant

Since undergoing the procedure, there has been an improvement in Tabitha's seizure management. However, Dr. Grewal says it is too early to know whether this is due to the deep brain stimulation, stem cells or both. 

Drs. Grewal and Parker say there is still a long road ahead to determine whether these cell therapies are proven safe and effective for patients with DRE. But they agree each day brings them one step closer to a potential treatment or cure for patients like Tabitha and Anthony.

"We've thought about this for generations, we just didn't have these technologies to enable it. Now we do," says Dr. Grewal. "So, whether it's wound healing, neurodegeneration, epilepsy or stroke, there are so many different studies going on investigating the potential of regenerative or reparative therapies."


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Enhancing care for heart failure patients through a data-driven approach https://newsnetwork.mayoclinic.org/discussion/enhancing-care-for-heart-failure-patients-through-a-data-driven-approach/ Wed, 12 Mar 2025 12:30:00 +0000 https://newsnetwork.mayoclinic.org/?p=400623 A recent Mayo Clinic study has made a data-driven discovery for patients with heart failure in the intensive care unit. Using machine learning, the researchers identified groups of patients with heart failure with higher and lower risk of mortality based on underlying patterns of laboratory values. "The goal of this study was to explore different […]

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A recent Mayo Clinic study has made a data-driven discovery for patients with heart failure in the intensive care unit.

Using machine learning, the researchers identified groups of patients with heart failure with higher and lower risk of mortality based on underlying patterns of laboratory values.

"The goal of this study was to explore different groups in the larger population of patients with heart failure admitted to the cardiac ICU," says Jacob Jentzer, M.D., a Kern Health Care Delivery Scholar and lead author of the study. "Recognizing that a critically ill heart failure patient belongs to one of these groups can help clinicians understand their likely underlying disease process and prognosis, allowing individualized therapy with the goal of improving outcomes."

Jacob Jentzer, M.D.

Through the analysis, Dr. Jentzer and his colleagues identified five distinct groups, including patients with evidence of iron deficiency, kidney dysfunction, inflammation and poor blood flow. Each group had unique characteristics and risk profiles. Researchers underscore that by identifying these distinct groups, clinicians can craft treatment plans for each patient's needs and help to enhance outcomes and overall quality of care.

The groups in the study included:

  • Uncomplicated: Patients generally had milder disease.
  • Iron-deficient: Signs of iron deficiency, which can significantly impact heart function.
  • Cardiorenal: Patients showed signs of kidney dysfunction, which is a common complication of severe heart failure.
  • Inflamed: Patients revealed signs of significant inflammation.
  • Hypoperfused: Patients showed signs of poor blood flow to vital organs, indicating more severe heart failure.

The findings revealed that the patients in the uncomplicated group generally had the best outcomes. In contrast, the patients in the inflamed, cardiorenal and iron-deficient groups all had an intermediate mortality risk.

Researchers note that patients in the hypoperfused group had the highest risk of mortality.

"The phenotypes and subgroups based on patterns of laboratory findings identified in this study have not been described before and could represent different noncardiac organ complications driven by different underlying biologic processes," says Dr. Jentzer. "This may help identify unique targeted therapies in a future study." 

Shannon Dunlay, M.D.

Researchers underscore the influence of the Kern Health Care Delivery Scholars Program on researchers conducting studies such as this that impact the practice and seek to improve healthcare delivery. 

"The Kern Health Care Delivery Scholars program enables practicing clinicians, such as Dr. Jentzer, to dedicate time to learning healthcare delivery methods so they can approach clinical challenges in a novel way," says Shannon Dunlay, M.D., a heart failure cardiologist and senior author of the study. "The findings from this study can be used to identify personalized treatment strategies for patients with heart failure in the cardiac ICU."

Review the study for a complete list of authors, disclosures and funding.

About Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery

The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery collaborates with clinical areas across Mayo to create and evaluate data-driven solutions to transform the experience of health and healthcare for patients, staff and communities. It drives continuous improvement of Mayo Clinic as a learning health system, enabling safe, evidence-based, high-quality care.

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New debriefing tool helps improve nurse well-being https://newsnetwork.mayoclinic.org/discussion/new-debriefing-tool-helps-improve-nurse-well-being/ Thu, 06 Feb 2025 14:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=399589 A recent Mayo Clinic study highlights how a new debriefing tool is helping to improve the mental well-being of nurses. The tool, which goes by the acronym BONE Break, is a structured approach designed to help address the emotional and psychological distress known as Second Victim Syndrome which can be experienced by people within healthcare […]

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A recent Mayo Clinic study highlights how a new debriefing tool is helping to improve the mental well-being of nurses.

The tool, which goes by the acronym BONE Break, is a structured approach designed to help address the emotional and psychological distress known as Second Victim Syndrome which can be experienced by people within healthcare teams.

Amberly Hess, D.N.P.

"Second Victim Syndrome is the emotional toll that can occur after an adverse event in the hospital," says Amberly Hess, D.N.P., lead author of the study. "It's the feeling of guilt, self-blame and trauma that can arise when a healthcare worker is involved in or witnesses an adverse patient event."

To understand the debriefing tool's impact, researchers examined its use with registered nurses (RNs) in a 24-bed inpatient unit at Mayo Clinic over a nine-month time frame.

The BONE break tool is designed to be implemented within the first 30 minutes following an event, and to offer peer support and emotional processing to the nurses involved. The nurses who participated reported that they considered over 95% of the sessions helpful.

"One of the most significant insights we gained within the study was the difference between intellectualizing and emotionally processing what happens to us," says Hess.

"When I would run the BONE Break tool, I saw the physiologic changes in nurses," she adds. "I watched the shoulders relax and release tension."

Hess emphasizes that the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery played a pivotal role in developing and evaluating the BONE Break tool.

"The Kern Center provided the framework and allowed the study to grow," says Hess.

Renaldo Blocker, Ph.D.

"The nursing staff brought this study to the Kern Center and the collaboration was great," says Renaldo Blocker, Ph.D., a human factors engineering researcher and senior author of the study.

Dr. Blocker is a Robert D. and Patricia E. Kern Honored Investigator and leads a research team on cognitive engineering and neuroergonomics within the Kern Center.            

Researchers note that the nurses who participated were responsible for collecting data immediately following each BONE Break session, including the type of event, such as a patient fall.

The BONE Break debriefing process consisted of the following steps.

  • Buoy/Break: Nurses took a silent break or short pause to allow for space, then reflected on the statement, "You are a good nurse working in a very complex environment." Peers then offered support using phrases such as "I cannot imagine what that must have been like for you. Can we talk about it?"
  • Open-Up: The nurses then invited each other to talk about the event that had just occurred: "This has to be difficult. Are you OK?" and "How are you doing after the event?"
  • Needs: Nurses assessed one another’s needs following the event: "What do you need right now to be able to be successful in returning to work?" They offered each other affirmations surrounding those needs: "I believe in you."
  • Exit/Evaluate: Afterward, nurses discussed the effectiveness of the debriefing before returning to the floor.

"This study highlights the importance of practitioners and scientists working together to evaluate, assess and implement these formative tools," says Dr. Blocker.

Researchers hope to expand the debriefing tool to other healthcare teams.

"This is an easy tool to implement, and it takes just a couple of people to make it happen," says Hess. "If anybody's interested in enhancing the culture of their team, this is a good tool to have available."

Review the study for a complete list of authors, disclosures and funding.

About Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery

The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery collaborates with clinical areas across Mayo to create and evaluate data-driven solutions to transform the experience of health and healthcare for patients, staff and communities. It drives continuous improvement of Mayo Clinic as a learning health system, enabling safe, evidence-based, high-quality care.

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Native community experts guide tobacco cessation research https://newsnetwork.mayoclinic.org/discussion/native-community-experts-guide-tobacco-cessation-research/ Wed, 05 Feb 2025 14:30:00 +0000 https://newsnetwork.mayoclinic.org/?p=399448 When cancer researcher Annie Rusk, M.D., teamed up with Kory Billie and other Indigenous community members, their personal experiences with tobacco use helped her design a culturally tailored approach to quitting.

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When Mayo Clinic approached Phoenix resident Kory Billie about helping researcher Annie Rusk, M.D., design a tobacco cessation intervention tailored for Native Americans, he jumped at the chance.

Billie, who has smoked most of his life, understands how using tobacco can negatively affect many aspects of a person's health. He is also a member of the Navajo Nation and has witnessed the challenges that family, friends and other members of his tribe have faced quitting tobacco. In recent years, he has watched the rising use of vaping among Navajo youth with concern. He wants to discourage young people from using tobacco except for ceremonial purposes.

Headshot of Dr. Rusk

"Science seeking to cure disease and transform the way we deliver healthcare requires a direct connection to the people we serve."

Annie Rusk, M.D.

Billie's experiences made him an ideal candidate to advise Dr. Rusk on her research through a Mayo Clinic program called Community Engagement (CE) Studios.

CE Studios is a consultation service that connects researchers to a group of "community experts" who represent the researcher's population of interest. These experts meet with the researcher, usually during a study's planning phase, to learn how the study is being designed, ask questions and provide feedback.

Since Mayo Clinic introduced CE Studios in 2021, Dr. Rusk has used it numerous times. She believes community input is essential for all research projects, regardless of their focus. 

"By involving people with lived experiences, we can gain valuable insights and ensure our research is relevant and impactful," says Dr. Rusk. "Even discovery science projects taking place in a lab can benefit from community perspectives."

Lived experiences provide key insights

For the CE Studios session with Dr. Rusk, Billie joined three other community experts from tribes in the Midwest, Alaska and Canada in a virtual meeting. The four community experts were there to advise Dr. Rusk on a new clinical trial.

Kory Billie, a member of the Navajo Nation from Phoenix, wants to discourage youth in his community from using tobacco, except for ceremonial purposes.

Dr. Rusk's research focuses on understanding barriers to smoking cessation among Native Americans. She felt it was important to consult with people from a variety of Indigenous communities to ensure her research aligned with their community health needs and priorities.

Billie says he enjoyed this opportunity to connect with like-minded people from similar backgrounds, and to speak with Dr. Rusk about how tobacco use was affecting communities like his. He shared his experiences with homelessness and addiction, as well as the difficulty of accessing smoking cessation resources in Indian Country.

What Dr. Rusk learned from Billie and the other community experts during the CE Studios session motivated her to make an important change to her study design.

The elements of the study that resonated best with the community experts were those geared toward developing practical behavioral health interventions. Billie and the other experts emphasized that understanding the social and cultural drivers of smoking would be key to achieving meaningful outcomes.  "You have to understand a person's environment and the way they're brought up," says Billie.

The community experts were less keen on a genetic analysis component Dr. Rusk had planned to include. They felt this aspect did not align meaningfully with community health priorities. Based on this feedback, Dr. Rusk eliminated this component from her study. 

While incorporating this kind of feedback can be challenging, Dr. Rusk says the long-term benefits are worth it for all.

"Science seeking to cure disease and transform the way we deliver healthcare requires a direct connection to the people we serve," she says.

Health is a blessing

Billie says he appreciated this chance to participate in CE Studios. He hopes that the knowledge he and the other experts shared will give Dr. Rusk the context she needs to develop a tobacco intervention that will have a lasting impact. Upon completion of the study, he looks forward to hearing from her to see the results.

Billie encourages other people to consider participating in CE Studios to help advance research to improve the health of their communities. He connects his motivation for this work to a Navajo proverb that reminds his people to live their lives with purpose: "Remember to walk in beauty. Beauty before you and beauty behind you."

If the community can improve the health of its people today, Billie says, they will pass that blessing on to future generations.

Get involved in CE Studios

A CE Studios community expert can be a person with any type of lived experience. Experts receive a small honorarium in exchange for their time. People interested in joining Mayo Clinic’s database of community experts should complete a Community Expert Enrollment Form.  

Young african american woman smiling, happy holding pink breast cancer ribbon at the city.

Mayo Clinic Community Engaged Research

Learn more about community outreach and engagement and community-engaged research at Mayo Clinic.

This work is supported by Mayo Clinic Center for Clinical and Translational Science and by Mayo Clinic Comprehensive Cancer Center.

a circle of people's hands and arms coming together as a diverse community like a work team

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8 common health conditions midlife women face https://newsnetwork.mayoclinic.org/discussion/how-race-ethnicity-and-neighborhood-may-affect-midlife-womens-health/ Tue, 14 Jan 2025 14:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=398574 A study published in Menopause provides a comprehensive overview of the most common conditions diagnosed in clinical practice among women in the U.S. Upper Midwest during their critical midlife transition. Overall, eight conditions increased by 45% or more between the ages of 40 and 59, and several conditions were more common in Black women and […]

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A study published in Menopause provides a comprehensive overview of the most common conditions diagnosed in clinical practice among women in the U.S. Upper Midwest during their critical midlife transition.

Overall, eight conditions increased by 45% or more between the ages of 40 and 59, and several conditions were more common in Black women and women living in more socioeconomically deprived neighborhoods.

Jennifer St. Sauver, Ph.D.

Jennifer St. Sauver, Ph.D., the study's first author and professor of epidemiology at Mayo Clinic, says that the health of women in midlife is understudied, and comprehensive data about women between the ages of 40 and 59 are lacking.

"Most studies examine men and women together. However, we know that men and women age differently, so it's important to do separate studies to understand these differences," she explains.

Researchers know that hypertension and high cholesterol increase rapidly in both men and women during midlife. However, in this study, the researchers were surprised to see such a significant increase in sleep disorders, acid reflux and conditions related to joint and muscle pain in midlife women, according to Dr. St. Sauver.

Together, these data provide a picture of the most common health conditions that come to medical attention in midlife women and the most rapidly increasing, medically diagnosed conditions during the menopause transition.

Key findings

Eight conditions became significantly more common and increased in women during midlife (ages 40-59).

Black women and women living in socioeconomically deprived neighborhoods were more likely to have many of these conditions. Black women were more likely to have high blood pressure and esophageal disorders (especially acid reflux) compared to white women across all age groups. Women living in more deprived neighborhoods had a significantly higher prevalence of high cholesterol, high blood pressure, sleep disorders and esophageal disorders.

"Our data provide a comprehensive picture of the most common conditions coming to medical attention in midlife women. They are useful for understanding common diagnoses in women during the menopause transition and suggest that additional attention should be focused on Black women and women with lower socioeconomic status to ensure that common midlife conditions are identified and addressed," says women's health researcher and coauthor Stephanie Faubion, M.D., Mayo Clinic in Florida.

The findings also underscore the need for increased research to understand underlying biological changes in women at midlife and how these changes contribute to the development of many conditions throughout the aging process. Such research may suggest future treatments that could be beneficial for multiple conditions. In addition, the findings highlight the need for increased attention to the health needs of Black women and women with lower socioeconomic status to ensure early diagnosis and treatment of common midlife health conditions.

The study used data from the Rochester Epidemiology Project in Minnesota, including medical records from approximately 1.4 million people in the Upper Midwest. Researchers analyzed data from 86,946 women between the ages of 40 and 59. They examined diagnoses recorded in electronic health records between 2016 and 2019.

Review the study for a complete list of authors, disclosures and funding.

Related: Managing menopause symptoms

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High blood pressure in pregnancy a risk factor for early heart disease https://newsnetwork.mayoclinic.org/discussion/high-blood-pressure-in-pregnancy-a-risk-factor-for-early-heart-disease/ Tue, 07 Jan 2025 14:30:00 +0000 https://newsnetwork.mayoclinic.org/?p=398510 A new study has revealed a significant link between a common pregnancy complication and early heart disease in women. Researchers found that women with a history of hypertensive disorders of pregnancy (HDP) were at higher risk of developing coronary artery disease at an earlier age. In addition, they found that women with these disorders were […]

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Image of a pregnant women getting her blood pressure checked by medical professional.
Getty Images

A new study has revealed a significant link between a common pregnancy complication and early heart disease in women.

Researchers found that women with a history of hypertensive disorders of pregnancy (HDP) were at higher risk of developing coronary artery disease at an earlier age. In addition, they found that women with these disorders were at higher risk of myocardial infarction with non-obstructive coronary arteries (MINOCA) — heart attacks that occur when the coronary arteries appear normal. 

Hypertensive disorders of pregnancy (HDP) — such as gestational hypertension, chronic hypertension and preeclampsia — affect 15% of women during their reproductive years. Marked by high blood pressure, the effects of these disorders continue to impact the health of mothers and babies well after pregnancy.

Compared to women with a history of normotensive (normal blood pressure) pregnancies, women in this study with a history of HDP were at greater risk for:

  • Early onset of coronary artery disease: Occurring on average seven years earlier among women with a history of HDP.
  • More severe atherosclerotic coronary artery disease: Twice as likely among women with a history of HDP.
  • Increased risk of MINOCA: Twice as likely among women with a history of HDP.
Photo of Dr. Vesna Garovic
Vesna Garovic, M.D., Ph.D.

"This research highlights the need for earlier screening for heart disease among women with a history of high blood pressure in pregnancy, particularly for MINOCA, which is up to five times more common in women than in men," says Vesna Garovic, M.D., Ph.D., a Mayo Clinic nephrologist and senior author of the study.

To improve patient care and outcomes for women, the researchers say clinicians should not only screen for traditional coronary artery disease risk factors, but they should also screen for non-traditional risk factors associated with MINOCA and other non-obstructive types of coronary artery disease, such as stress, autoimmune diseases — and now, HDP.

How does high blood pressure in pregnancy lead to coronary artery disease?

According to the researchers, there are two related types of small vessel heart disease that may make it more likely for women to develop HDP and coronary artery disease:

  1. Microvascular dysfunction: Women with a history of HDP often have this underlying problem, which occurs when the small blood vessels that feed the heart stop working as they should, decreasing blood flow to the heart.
  2. Endothelial dysfunction: This is a problem common to both HDP and coronary artery disease. It occurs when the cells that line the inside of blood vessels malfunction, narrowing instead of dilating.

Together, these dysfunctions clog or narrow the arteries and small blood vessels that supply blood to the heart, which can lead to coronary artery disease without any physical blockage (non-obstructive). The researchers think it's possible that these processes may feed on one another, creating an environment where coronary artery disease is more likely to occur.

Further research, including large prospective studies, are needed to understand the mechanisms linking HDP to coronary artery disease, such as specific biomarkers and genetic factors that contribute to increased risk.

Read the paper to learn more about the study, including funding and disclosures.

A growing body of research on high blood pressure in pregnancy

Research led by Dr. Garovic, a Mayo Clinic nephrologist, has shown links between HDP and a greater risk for a wide range of health concerns including:

The overall goal of Dr. Garovic's research is to increase understanding of the causes and mechanisms that play a role in the process that leads to HDP. The potential to identify targeted therapies that address the underlying causes of disease may improve treatment options for diseases, such as preeclampsia, that have seen few therapeutic advances in recent decades.

Related:
Mothers with history of pre-eclampsia may encounter cardiovascular challenges later in life

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(VIDEO) Breakthrough in the fight against glioblastoma https://newsnetwork.mayoclinic.org/discussion/video-breakthrough-in-the-fight-against-glioblastoma/ Mon, 16 Dec 2024 18:33:43 +0000 https://newsnetwork.mayoclinic.org/?p=397757 There is new hope in the fight against glioblastoma, the deadliest and most aggressive form of primary brain cancer. Currently there is no cure, but results of a new study conducted at Mayo Clinic show patients experienced improved overall survival while maintaining quality of life after undergoing a novel approach to treatment. Watch: Breakthrough in […]

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The Casper family cherishing time together in 2023

There is new hope in the fight against glioblastoma, the deadliest and most aggressive form of primary brain cancer.

Currently there is no cure, but results of a new study conducted at Mayo Clinic show patients experienced improved overall survival while maintaining quality of life after undergoing a novel approach to treatment.

Watch: Breakthrough in the fight against glioblastoma

Journalists: Broadcast-quality video (2:45) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Richard Casper was one of the study participants. The Arizona man enrolled in the clinical trial at Mayo Clinic in Phoenix after his diagnosis of glioblastoma in 2019. Richard was given only months to live, but his family says thanks to his strength, perseverance, and innovative medical care, he survived nearly double the amount of time.

"To be almost two and a half, three years in after being told you only have a few months, it's quite remarkable," says Susan Casper, Richard's daughter.

Richard succumbed to the disease in 2023. During the treatment, his family says he had little to no side effects. In the months before his passing, Richard stated, "I feel great. If someone didn't tell me I have the glioblastoma, I wouldn't even know it."

Richard (center) with his daughter Susan (left) and wife Carol (right)

The clinical trial was led by Dr. Sujay Vora, a radiation oncologist at Mayo Clinic in Arizona. The small, single-arm study incorporated the use of advanced imaging technology combined with cutting-edge radiation therapy in patients over the age of 65 with newly diagnosed World Health Organization (WHO) grade 4 malignant glioblastoma.

"The patients lived longer than we expected. This patient population is expected to live six to nine months. Our average survival was 13.1 months. There were some patients that were out closer to two years. The results exceeded our expectations. We are very pleased," says Dr. Vora.

The study is published in The Lancet Oncology.

Dr. Sujay Vora, radiation oncologist, reviewing imaging of Richard's glioblastoma

Why is glioblastoma so deadly?

Glioblastoma is among the most challenging cancers to treat. The disease is aggressive and invades healthy brain tissue with hairlike tentacles. "That is why doing a complete surgery is very difficult, as compared to say breast cancer, where a lumpectomy can be performed to remove not only the tumor, but a healthy rim of tissue around it," explains Dr. Vora.

Surgery for glioblastoma presents a different set of obstacles. "When it comes to glioblastoma, it is challenging to do that level of surgery. You try to surgically remove whatever you can safely without leaving the patient worse off after surgery."

Another factor that makes glioblastoma so lethal is that it can be fast- growing and unresponsive to treatment.

"These cancer cells are quite challenging to overcome," says Dr. Vora. "There are some patients we see after their surgery, and by the time we are ready to start their treatment, they've already had a recurrence of the disease."

Medical illustration of glioblastoma, a type of brain tumor

An estimated 14,500 people will be diagnosed with glioblastoma in the U.S this year. "In the best of circumstances the average survival rates are in the 14-15 month range. But for patients 65 and older, the group that was the focus of our study, patients do even worse. The prognosis for this population is between six and nine months," says Dr. Vora.

Symptoms of glioblastoma

Symptoms of glioblastoma

  • Headache
  • Nausea and vomiting
  • Confusion or decline in brain function
  • Memory loss
  • Personality changes
  • Vision changes
  • Speech difficulties
  • Trouble with balance
  • Muscle weakness
  • Seizures

Attacking glioblastoma with a triad

For the clinical trial, Dr. Vora and his team mapped out a plan that would allow them to be more intentional and precise with treating the location of the glioblastoma.

"It is the triad of metabolic imaging, proton beam therapy and hypofractionation, which is a shorter course of radiation that might be the best combination to treat glioblastoma in the 65-and-older patient population."

Dr. Sujay Vora, radiation oncologist & Principal study investigator

The imaging incorporated the use of 18F-DOPA PET and contrast-enhanced MRI. "18F-DOPA PET is an amino acid tracer that can cross the blood brain barrier, and it can accumulate within the glioblastoma cells itself," says Dr. Vora.

Researchers combined these images to determine the location of the most metabolically active "hot spots" of the cancer in the brain.

Taking aim with proton beam therapy

Study investigators used one of the most advanced forms of radiation treatment, called proton beam therapy.

"With standard radiation, the beams go through the brain tissue, so there's an entrance dose and the exit dose. But with proton beam therapy, we dial up how deeply we want the radiation to go," explains Dr. Vora. "It drops off its energy in the tumor, and then there's basically no radiation after that. It allows us to be more preferential into the delivery of radiation and protect more of the healthy surrounding tissue."

During proton beam therapy, a patient lies on a table while the machine rotates around the patient's head targeting the tumor with an invisible beam. The patient is awake for the procedure. It is painless with many patients reporting fewer to no side effects.

Unlike traditional radiation for glioblastoma, which is typically delivered over the course of three to six weeks, treatment with proton beam therapy for the study was conducted in one to two weeks.

Patient undergoing proton beam therapy

"I am hopeful that this is the first step of many where we can continue to move the needle and allow patients to live longer and live well," says Dr. Vora. "The goal is to improve the outcomes for our patients allowing them to spend more time with their families."

Nadya's story

2022 was a tough year for Nadya El-Afandi. She was on the verge of celebrating a long but successful battle with breast cancer.

"Out of the blue, I had a seizure. I went to the hospital, they did an MRI. After additional tests they told me the news: 'You have a glioblastoma,'" recalls Nadya. She asked her doctor if she should continue her breast cancer treatment. "He said, 'No'-meaning the glioblastoma would kill me before the breast cancer."

Nadya was not about to give up.

Nadya El-Afandi in the hospital after surgery for glioblastoma in 2022 photo courtesy: Nadya El-Afandi

Nadya is a wife and mother of four children. She lives just outside of Rochester, Minnesota. "My children said to me, 'Mom, you're a unicorn. Of course you'll live.' My mother has had a number of medical conditions and we never expected her to live this long. And she's still alive and with us," says Nadya. "My children have also said, 'You've got grandma's blood in you. You will live.'"

Nadya is receiving care at Mayo Clinic in Rochester. That's where she learned about a new clinical trial called SAGA, or stereotactic ablative radiation treatment for glioblastoma. The phase 2 clinical trial is building upon Dr. Vora's research and studying a larger group of patients. The study is being led by Dr. William Breen, radiation oncologist at Mayo Clinic in Rochester.

Our goal is to transform the way we treat glioblastoma - in that we are using advanced imaging to help us better target the tumor. We're looking at shorter courses of radiation to minimize the burden on patients and their families and hopefully complete effective and safe treatment in a shorter amount of time.

William Breen, M.D., Radiation Oncologist

It has been 15 months since Nadya began treatment for glioblastoma. So far, there is no sign the glioblastoma has returned. "Nadya has already exceeded the time that's expected time to have a tumor recurrence, and she continues to do well," says Dr. Breen. "Nadya is beyond some measures of what the average, overall survival time would be."

While Nadya's progress in encouraging, Dr. Breen says it is important to note that it is too early to draw any conclusions about safety or efficacy of this approach to treatment until the study is completed.

Meanwhile, Nadya is focused on living her life to the fullest. Fifteen months after undergoing treatment, Nadya embarked on an adventure to Hawaii, where she spent time taking helicopter tours, snorkeling and hiking.

"We are living on the edge of medical miracles, and we are riding that tide. There's no cure for glioblastoma yet. But I've been able to take advantage of this medical opportunity, and it has given me a quality of life that is just outstanding. Every day is the best day and I'm going to enjoy every minute of it."

Nadya El-Afandi, glioblastoma patient
Nadya vacationing in Hawaii 15 months after her treatment for glioblastoma
photo courtesy: Nadya El-Afandi

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(VIDEO) Focus on hope: Brescia’s Story https://newsnetwork.mayoclinic.org/discussion/video-focus-on-hope-brescias-story/ Thu, 14 Nov 2024 17:48:52 +0000 https://newsnetwork.mayoclinic.org/?p=396442 At 20 years old, Brescia Dover was ready to take on the world. She was on her way to achieving her dream of being a professional photographer. Everything was going according to plan when her dream came to a halt. Brescia was diagnosed with cancer. With her plans for her future pushed aside, Brescia's focus […]

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Brescia Dover studying abroad in Italy
Photo courtesy: Brescia Dover

At 20 years old, Brescia Dover was ready to take on the world.

She was on her way to achieving her dream of being a professional photographer.

Everything was going according to plan when her dream came to a halt. Brescia was diagnosed with cancer. With her plans for her future pushed aside, Brescia's focus was now on her health and hope.

It's an unexpected chapter facing an increasing number of adolescents and young adults diagnosed with cancer.

Watch: Focus on hope: Brescia's Story

Journalists: Broadcast-quality video (2:31) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Brescia's dream

At 4 years old, it was clear Brescia Dover had a flare for creativity. She readily admits she was never one to miss an opportunity to play dress-up, draw pictures, or tell a story.

Brescia at 4 years old
Photo courtesy: Brescia Dover

"Being creative has always been at the core of what I do," she says. Early on she developed a love for photography and videography. Brescia's dream was to pursue a career that allowed her to put her creative energy to work.

After high school Brescia's passion led her to college to study film and media production. She even traveled to Italy to study abroad. After her Italian adventure, Brescia returned to the U.S. to finish college. First, she went to her doctor for her annual checkup.

"I lived a really healthy, balanced lifestyle," says Brescia. "My doctor found swelling on the side of my neck. I hadn't noticed the swelling and didn't have any symptoms." Brescia was sent for an ultrasound followed by a surgical biopsy.

Looking back at this photo taken before her cancer diagnosis, Brescia says she can see the swelling on the left side of her neck
Photo courtesy: Brescia Dover

The diagnosis - cancer

The surgical biopsy revealed Brescia had Hodgkin lymphoma, a rare type of blood cancer. "Being diagnosed with cancer at 20 years old was so scary and I wouldn't wish that on any 20-year-old," says Brescia. "I think about the young version of me who just found out she had cancer, and I just wish I could give her a hug."

Hodgkin lymphoma is a type of cancer that begins in the lymphatic system, which is part of the immune system. Brescia says the news came as a shock because she felt healthy and had no family history of cancer. "It felt like there was something I could have done to prevent it, but I learned that there's nothing I could have done," says Brescia.

Being a young adult with cancer

Brescia at Mayo Clinic
Photo courtesy: Brescia Dover

"When I was going through college and diagnosed with cancer it was not what I was expecting," says Brescia. "Being a young adult with cancer was very hard and challenging. It is scary and can be very frightening."

At 20 years old, Brescia falls into a group of patients referred to as adolescents and young adults with cancer. AYA patients are between the ages of 15 and 39. Experts says AYA patients face a distinct set of challenges.

"One of the reasons this age group is so important is based on their life stage; the things they uniquely face, like body image, disruption in school and work, financial challenges, feeling isolation," says Dr. Allison Rosenthal, with the Mayo Clinic Comprehensive Cancer Center.

Doctor and cancer survivor

Dr. Allison Rosenthal is medical director of Mayo Clinic's Adolescent and Young Adult Cancer Program

Dr. Rosenthal knows firsthand the challenges AYA patients face. She was diagnosed with leukemia during medical school. "I had leukemia in medical school. There were a lot of missed opportunities in my care to recognize the issues that I might face as a 24-year-old woman," explains Dr. Rosenthal.

Putting her experience into action, Dr. Rosenthal championed Mayo Clinic's Adolescent and Young Adults with Cancer program. The program is tailored to meet the unique needs of AYA patients to include medical care, fertility concerns, social and relationship issues, school and work concerns, and the personal and emotional impact of cancer in this age group.

"I want the patients I care for to feel like they are comprehensively care for and that somebody understands that this is different."

-Dr. Allison Rosenthal, director, Mayo Clinic Adolescent and Young Adult Cancer Program
Brescia and her doctor, Allison Rosenthal
Photo courtesy: Brescia Dover

Brescia underwent about four months of chemotherapy treatment under the care of Dr. Rosenthal. "She did a beautiful job of explaining to me what the process was going to look like and what my treatment plan was going to look like. Because I'm so young, she walked me through the whole process," says Brescia.

Cancer-free and focused on the future

Photo courtesy: Brescia Dover

After her cancer treatments, Brescia returned to college and got her degree. She the started her own marketing agency providing social media management, videography, photography, and brand development with her personal creative touch. She also celebrated her five-year anniversary of being cancer-free.

"I also have a podcast called the Checkered Jaguar where I get to have incredible conversations with people, share their stories and connect people who may be going through similar challenges that I went through," says Brescia. "We're all in this journey together and just being open and vulnerable with my journey, as challenging as it may be, I feel like it connects me to people all around the world."

Brescia is five years cancer-free and owns her own marketing agency
Photo courtesy: Brescia Dover

"To anyone in their 20s diagnosed with cancer, know that you are never alone. There is light at the end of the tunnel and there is hope."

-Brescia dover, cancer survivor

If you are someone you know would like to learn more about the Mayo Clinic Adolescent and Young Adults with Cancer Program please click this link or email us at arzayacancerprg@mayo.edu. You can also reach us at 480-574-1341.

Related articles:

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(VIDEO) Harnessing the power of innovation and a patient’s will to survive https://newsnetwork.mayoclinic.org/discussion/videoharnessing-the-power-of-innovation-and-a-patients-will-to-survive/ Thu, 31 Oct 2024 19:30:00 +0000 https://newsnetwork.mayoclinic.org/?p=395496 At 27 years old, Shraddha Kalgutkar was told she had less than a year to live. Determined to prove everyone wrong, she turned to Mayo Clinic in Arizona. Now Shraddha is living proof of the power of innovation combined with a patient's will to survive. Watch: Harnessing the power of innovation and a patient's will […]

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Shraddha Kaltgutar at Mayo Clinic in Phoenix, AZ

At 27 years old, Shraddha Kalgutkar was told she had less than a year to live. Determined to prove everyone wrong, she turned to Mayo Clinic in Arizona.

Now Shraddha is living proof of the power of innovation combined with a patient's will to survive.

Watch: Harnessing the power of innovation and a patient's will to survive

Journalists: Broadcast-quality video (4:03) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script

Shraddha's Story

It was November 2022, just a month shy of her 28th birthday.

Shraddha was wrapping up another day at the medical clinic where she worked as an occupational therapist. Shraddha's job was to help patients regain the ability to perform day-to-day activities following a health challenge like a surgery.

Suddenly that afternoon, Shraddha became the patient who needed help.

"My co-worker looked at me and said, 'Why is your hand all purple and blue?'" Shraddha says. She admits she had been feeling exceptionally tired as of late, but attributed it to a thyroid condition.

Her co-worker checked Shraddha's vital signs and found her blood oxygen level was dangerously low. "I remember her saying, 'If this is right, you wouldn't even be standing.'" A repeat test showed the same result. "The next thing I remember was we were on our way to the hospital," says Shraddha.

Shraddha enjoying the California coastline two years after surviving a condition that nearly took her life

At the hospital doctors began looking for the cause of Shraddha's low blood oxygen level. A series of tests traced Shraddha's condition all the way back to the day she was born.

"When I was born, doctors said I had fatty liver, but they didn't know why so they called it 'undiagnosed,'" says Shraddha. "The doctors thought it wouldn't be a problem because the liver has a tendency to heal itself." It didn't. Shraddha grew up seemingly in perfect health, unaware that her liver disease was silently doing damage to her body.

A little girl with a big dream

Shraddah at 5 years old in her childhood home in Mumbai, India

Shraddha was born in Mumbai, India which is often called the "City of Dreams." At a young age, Shraddha had big dreams of her own. She wanted to pursue a career in the medical field that would allow her to help others.

Every year Shraddha went to the doctor for her routine physical. Each time she was given a clean bill of health. "I used to do blood tests, but everything always looked good," says Shraddha. Still, the question of what caused her congenital liver condition lingered in her mind.

"I didn't have a family history of any liver condition. I've never had alcohol in my life," says Shraddha. "There was always a question mark. I needed to find out why this happened to me."

At 23, Shraddha became the first person in her family to leave India and go to the U.S. to attend college. She studied occupational therapy and got her master's degree at the University of Southern California. After college, Shraddha found her dream job at a medical clinic in California.

'You have less than a year to live'

All was going well until Shraddha began to noticed she was unusually tired. "When my sister came to visit she noticed I got tired after walking short distances. I went to the doctor and they thought maybe it was my thyroid," recalls Shraddha.

Then came the day her hands turned purple and her blood oxygen level mysteriously dropped. "My co-worker is a nurse so she got the oximeter and checked and it was 78%," says Shraddha. "And I was like, No, that's not possible because I wouldn't be alive." Shraddha's co-worker checked again, looked at the reading and said, "That's it, you have to go to the hospital."

A series of tests at the hospital revealed shocking results. Shraddha's liver condition had silently led to a more serious condition called hepatopulmonary syndrome.

Hepatopulmonary syndrome

Hepatopulmonary syndrome is caused when liver disease shunts blood away from the lungs preventing the body from getting the appropriate amount of oxygen. Doctors told Shraddha the only way she would survive is with a liver transplant. However, she says she was told her condition was so severe and the risk so high, that she would likely not survive a transplant.

She was denied the transplant and given less than a year to live.

"I told the doctors 'that just can't be. I can't have just one year with nothing to bring to this world. I have not served my purpose,'" recalls Shraddha.

Refusing to give up, Shraddha turned to Mayo Clinic in Arizona.

"More than 40% of her blood was being shunted away from her lungs. Because of that she had extremely low oxygen levels in her blood," explains Bashar Aqel, M.D., director of the Transplant Center at Mayo Clinic in Arizona. "Shraddha's case was one of the most severe cases of liver disease and hepatopulmonary syndrome."

Bashar Aqel, M.D., Director, Mayo Clinic Transplant Center in Arizona

Saving Shraddha

The liver transplant was Shraddha's only hope for survival. "Without a transplant, this disease was progressive and fatal. We don't like to use this word, but it is a very progressive disease," says Dr. Aqel. "There was no other cure than a liver transplant."

Dr. Aqel and his multidisciplinary team of experts at Mayo Clinic went to work on a strategy to save Shraddha. The team came up with a plan using a combination of some of the latest cutting-edge technologies in medicine.

"Liver in a box"

Transplanting any organ is a race agains the clock. Every second the donor organ is outside the body it begins to break down. Surgeons only have a limited time window to transplant the organ. Due to the complexity of Shraddha's case, Dr. Aqel's team knew they would need extra time. They decided to use one of the latest medical breakthroughs in transplant often referred to as "liver in a box."

Traditionally donor organs are kept cold until transplanted. "Liver in a box" uses a warm organ preservation method. The organ is placed in a container that pumps oxygenated, nutrient-rich blood through the liver simulating conditions in the human body. The innovative perfusion system gives surgeons more time to perform the transplant.

"Having the donor "liver in a box" allowed the donor liver to stay healthy while we performed this complex surgery," says Dr. Aqel.

Currently, this warm perfusion technology is primarily being used for heart, lungs and liver transplants.

"Liver in a box" safely preserves donor organ at body temperature until transplant

Saving lives with mobile ECMO

The next challenge was how to keep Shraddha's blood oxygen levels stable after her transplant. Dr. Aqel's team turned to a device called extracorporeal membrane oxygenation, or ECMO. The device often is used when the lungs aren't working properly. ECMO helps with the appropriate gas exchange that must occur to keep the body's blood oxygen level safe.

"It helps in getting oxygen into the blood and carbon dioxide out of the blood through the machine," explains Ayan Sen, M.D., medical director of Mayo Clinic's Intensive Care Unit in Arizona. "It helped us while her lungs recovered after her transplant."

The Mayo team also used one of the newest advancements in ECMO where the device is mobile.

Shraddha walking on mobile ECMO on December 24, 2022 - her 28th birthday

"The best part of the mobile ECMO was that we do it in a way where she could actually walk around with the machine so that we could continue with her physical therapy, which is so important for the healing process after such a complex surgery," says Dr. Sen.

Shraddha was in the ICU for nearly two months. With mobile ECMO she walked nearly every day.

Dr. Sen says mobile ECMO has proved to be a game-changer in critical cases like Shraddha's.

"It is technology that has really expanded from what surgeons do when they do heart surgeries and transplants where now we can do this to save lives at any place that is not a complex environment, like the ICU or the operating rooms," explains Dr. Sen.

Mobile ECMO has become a lifesaving medical breakthrough for many patients.

Ayan Sen, M.D., Medical Director, Intensive Care Unit at Mayo Clinic in Arizona

"It has enabled us to raise the bar when it comes to saving people, who, until now, could not have been saved in the absence of this heart-lung machine," says Dr. Sen.

A team of highly specialized experts escorted Shraddha on her daily walks, meticulously monitoring her vital signs. Each step required Shraddha to muster every bit of strength she had.

"From the first day, I thought even if it pains me, if it hurts, even if it feels impossible, I still need to put that step forward to do something better today than yesterday," recalls Shraddha.

"I was in a race with myself every day"

-Shraddha

'Mayo's mission is now my purpose'

Almost two years after her harrowing experience, Shraddha is healthy and back at work. She continues her daily walks, only now, at the beach, in solitude, reflecting on how her own experience can make her a better healthcare professional.

Shraddha visiting Mayo Clinic after her lifesaving transplant

"Mayo Clinic doesn't like to say no. They set out to achieve the unachievable," says Shraddha. "My goal is to treat patients as they do, making them a priority."

Shraddha says words of thanks alone are not enough to convey her gratitude.

"Dr. Aqel and his team achieved something for me that everyone else thought was impossible," says Shraddha. "It was a gift. I will keep the mission of Mayo Clinic in mind when I am serving my patients. My purpose now is to put forward their purpose and help someone else."


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