This so-called adult life: Managing ACHD

You are probably tired of hearing it, but you’re an adult now. And your life has probably seen a lot of changes. Maybe you moved out of your house, went to college, started a relationship, or got a job…major changes.  Even with all of that on your plate, there’s one other thing you have to manage: your health.

Being born with a congenital heart defect means you are no stranger to doctors. And you have definitely outgrown the cutesy children’s clinics you attended until teenage years. But now is not the time to ghost on your cardiac care. In fact, it’s more important than ever.464841199

Even though it seems like one more thing to schedule in your increasingly hectic life, your Adult Congenital Heart Disease (ACHD) health care team is your greatest resource when it comes to navigating all these new experiences. Managing stress, drugs and alcohol, all of these things affect the heart.

While your desire not to rely on your parents is reasonable and a movement to independence is actually encouraged, consider them your allies in health. They’ve been on this journey with you. Make sure to talk to them about your health and adult care. Not because they worry (although of course they do) but they are your living medical record, can help recall important events and medications, and can relate to how hard this can be. Really.

The good news is even with ACHD you are likely not that different from your peers. Trying to figure out what you want to do with your life is pretty typical! Plus, everyone will face some kind of health challenges in adulthood.

You can stay ahead of these issues, but you are in the driver’s seat now. So in between those Tinder dates, make time for your cardiologist.

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In this blog series, we will tackle the tough issues that young adults with congenital heart disease (ACHD) face as they manage a lifelong condition. Sex, drugs and alcohol, tattoos and piercings are considerations for many young adults, but those with ACHD might wonder: is it safe? The ACHD team at the OHSU Knight Cardiovascular Institute works to make sure no question goes unanswered, so if you have questions that go beyond the blog visit our website or submit your own question here.

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2016_12_CAR_Liedtke_119[1] (1)Adrienne Kovacs, Ph.D., is a psychologist who works with people who have congenital heart disease—a heart problem that has been present since birth. She directs Behavioral Cardiovascular Care at the OHSU Knight Cardiovascular Institute.

The seeds of heart disease risk are planted before birth

Heart disease, rare only a century ago, is now the most common cause of death worldwide. Many explanations for this meteoric rise have been put forth, but most have fallen well short of explaining how this once rare chronic disease could kill the equivalent of the population of Portland, Oregon each year.

About 25 years ago an English epidemiologist named David Barker found that areas of England with high rates of infant deaths following WWII had high rates of adult death from heart disease 50 years later. His curiosity led to one of the largest paradigm shifts in medicine during the past century. Heart disease is not a result of faulty genes or how many value meals we consumed as adults.

Risk for heart disease is programmed into our makeup before we are even born based on how we grew in the womb.

How it workstoddler-with-baby-brother-850x570

Think about planting a garden – if the seeds are planted in poor soil and aren’t nourished with sunlight and water, the plants will grow poorly. They will be smaller and less healthy. The same is true for humans. A developing fetus senses its environmental surroundings and sets a growth pattern accordingly. If there are few nutritional stores available, the fetus will grow slowly and have a lower birth weight.

The heart, along with most of the body’s other organs and systems, is fully formed at birth and will only enlarge as we grow. A poor nutritional environment in the womb can lead to permanent changes in the structure of the heart, including fewer cells and poor blood flow. Since a body’s organs do not work in isolation, but in a synchronized concert we know that other effects of poor nutrition in the womb contribute to heart disease risk as well. Small babies are born with fewer kidney filtering units and therefore at risk for having high blood pressure as adults. They are also less able to process insulin and are therefore more likely to get diabetes. We also know their livers are less likely to handle cholesterol efficiently. High blood pressure, diabetes and high cholesterol are all independent risk factors for heart disease. Overall, low birth weight babies are less able to adapt to the world outside the womb and are more vulnerable for developing heart disease in adulthood.

Barker’s hypothesis was initially met with disbelief, after all it went against the messages health care providers had been promoting for decades – that heart disease resulted from poor dietary choices like too much saturated fat or too little fiber, poor lifestyle choices like smoking, or from as-yet-undiscovered genes.  How could birth weight predict death from heart disease 50 or more years later?

Multiple studies have now found the same link in differing populations, timeframes and geographic areas. What was once Barker’s hypothesis has become one of the fasted growing fields of research, now known as the Developmental Origins of Health and Disease, or DOHaD.

Smaller full-term babies, those born at five pounds or less have a three to five times higher risk of dying from heart disease then those born at eight to nine pounds. The risk can be seen across a graded scale, with babies born at five pounds having a higher risk than those born at six pounds, and those born at seven pounds having a higher risk than those born at six pounds. Risk begins to increase again in larger birth weight babies, those born at 10 pounds and above. We now know that birth weight alone is merely a rough indicator of how a baby grew in the womb. Placental size, shape and function as well as the mothers’ body type all play a role in the development of adult onset heart disease.

What it means

While we have made incredible strides in treating heart disease so that fewer people die from it, we have done a poor job at preventing heart disease. The field of developmental origins shows us that to reduce rates of heart disease, we must focus on prevention much earlier than we once thought. Waiting to discuss nutrition with fifty-year-old adults is too late. We need to focus on improving our food culture to ensure adolescents and women of childbearing age have easy access to affordable, nutritious whole foods. This will ensure our hearts are built strong and heart disease can once again become a rarity.

This article has been republished from betterthefuture.org

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Thornburg picture 2012Kent Thornburg, Ph.D. is Director of the Center for Developmental Health at the Knight Cardiovascular Institute, and Director of the Bob and Charlee Moore Institute for Nutrition & Wellness. He studies the roles of the placenta and the intrauterine environment as programming agents for adult-onset chronic disease and he leads studies on maternal diet and body in regulating fetal growth in women of Oregon.

Joe and Jodi: a love story

“She’s still here with me.”

Joe and Jodi Whitton at their home in Newberg, Oregon

Joe and Jodi Whitton at their home in Newberg, Oregon

When we sat down with Joe and Jodi Whitton to discuss Jodi’s lung cancer journey, the conversation quickly turned to their 48 years of life together. In celebration of Valentine’s Day, we thought we’d share a piece of their story.


Joe and Jodi met as teenagers – about six months before Joe left for Vietnam. A blind date led to a game of checkers and the rest, as they say, is history. After hearing the Texan say “thank you ma’am” for the first time, Jodi was smitten.

Unable to afford a traditional wedding and anxious to get married before Joe was deployed, they hurried to the courthouse. Divorce Court was in session but the judge agreed to marry them anyway. About two dozen people were in attendance (all getting divorces), but the young couple didn’t mind. After the brief ceremony they split a steak dinner and Joe shipped off that night for Vietnam.


Our conversation was filled with anecdotes from a life together. Like how Jodi wrote Joe a letter every day for 14 months whileJoe and Jodi he was in Vietnam. And how when Joe was stationed in Alameda, California he’d sneak off the boat each night to see her. Or the time a hospital accidently gave them “the Ferguson baby” and sent their daughter home with the wrong family. (They were reunited several hours later)


In between our interview questions, Joe was attentive to Jodi, checking to make sure she was comfortable and that she was taking in enough oxygen. “He does everything for me,” Jodi smiled.

The Whittons moved to Oregon in 1979 to raise their family. Joe worked for Boeing and Jodi was an interior designer. Today, the couple enjoys retirement with their four grown children and five grandchildren who live close by.

And after 48 years together? “We’re about halfway there,” Joe said with a grin.


For more on Jodi’s lung cancer story, visit our blog post.

 

 

World Cancer Day and the Hope of Targeted Therapy

Today is World Cancer Day and for Joe and Jodi Whitton, it’s a day to celebrate another year of life together.

In August of 2015, Jodi’s family took her to a nearby hospital to be treated for what they thought was a bad case of pneumonia. It was there that she learned she had Stage 4 lung cancer. The attending physician offered little hope, advising her to go into hospice care. Joe Whitton, Jodi’s husband of 48 years, was unwilling to accept the news: “If she wasn’t here, I don’t know what I’d do. I’d be lost.”

The couple decided to seek a second opinion.

Paging Dr. Takahashi

The Whittons turned to OHSU where they met with Dr. Gary Takahashi. They were immediately struck by the oncologist’s positive, enthusiastic demeanor and his willingness to take Jodi on as his patient. Jodi learned that she had ALK, a rare genetic mutation that would allow her to respond well to targeted therapy.

Joe and Jodi Whitton at their home in Newberg, Oregon

Joe and Jodi Whitton at their home in Newberg, Oregon

Jodi, who felt at this point she had nothing to lose, decided to try the treatment. She had already once experienced the benefits of a clinical trial at OHSU, several years earlier:

When myeloperifative disorder – a disease she’s battled since 1996 in which the bone marrow makes too many red blood cells, platelets, or certain white blood cells – attacked her spleen in 2008, causing it to more than double in size, her oncologist at the time referred her to OHSU where she was enrolled in a clinical trial. The couple would drive from their home in Newberg, Oregon to OHSU three times a week to take part in a two year double-blind “Jakafi 2” study under the care of Dr. Kim-Hien Dao. Within a week of beginning treatment, Jodi’s spleen had returned to it’s normal size.

Back to OHSU

Soon after she began seeing Dr. Takahashi and taking Alectinib, Jodi’s health started to improve. Joe keeps a picture on his phone of two x-rays taken just three months apart. The difference is striking.

Today, Jodi is cancer free. “My lungs are clear as a bell. There’s no cancer to go in remission.”

Jodi is grateful that Dr. Takahashi didn’t give up. “I’ve been blessed meeting him. He’s kept me alive.”

Joe has nothing but praise for the care they’ve received: “What’s so neat about all this is the targeted therapy. It works. You’re proof.”

Jodi still visits OHSU every two weeks where she meets with Dr. Takahashi. Every five or six weeks she returns to get a transfusion for the myeloproliferative disorder. She remains hopeful for a cure.

The rest of their time is spent enjoying their “retirement cottage” as Jodi calls it and spending time with their four adult children and five grandchildren.

Jodi’s advice for new patients? “Stay positive. Do things that take your mind off the cancer.”

Who’s the snow boss?

Record snowfall proves no match for OHSU’s mission-driven operations

Mother Nature walloped the Portland area Jan. 10 with 8 to 12 inches of snow overnight. Heavy, sticky, not-melting-anytime-soon snow. Yet faculty and staff across OHSU responded with acts large and small to care for patients, protect crucial lab experiments and keep students on track, even if remotely.

As Oregon’s academic health center and a level 1 trauma center, reliable access to OHSU for patients and employees is critical. Last summer, the OHSU Road Crew was formed to help ensure access to the Marquam Hill campus during inclement weather. Employees were recruited and trained to operate equipment owned by OHSU to supplement city-run road clearing efforts if necessary. This week, it was very necessary.

Dylan Thomas with A1 Integrity clearing the skybridge between OHSU and VA hospital

Dylan Thomas with A1 Integrity clearing the skybridge between OHSU and VA hospital

Ellen Pillow, research associate at the Clinical and Translational Research Center within the Oregon Clinical and Translational Research Institute at OHSU with 30 years of service, is one of 15 employees now trained to operate OHSU’s snow plow and support equipment.

“I applied for the OHSU Road Crew for two reasons: to do something completely out of my comfort zone and to serve my institution. It has been a really interesting ride, going to truck driving school, getting a commercial driver’s license, and getting behind the wheel of that enormous truck!” said Pillow, who worked 1 p.m. to 9 p.m. on the machine Jan. 11 and 12. “I am grateful that my OCTRI team has also been very supportive of me when I have to leave my desk to go clear the roads.”

“The road crew is a really interesting team – all ages and types of careers,” said Rod Taylor, executive assistant in the School of Medicine Dean’s office, who was out driving OHSU equipment in the wee hours this week. And after plenty of training and practice on how to operate a commercial vehicle, he said, “it’s easier to drive than I thought it would be. My method is to do everything slowly until I’m comfortable.”

The crew is made up of employees from across OHSU who otherwise wouldn’t have a role to play during inclement weather and want to pitch in to keep OHSU accessible. They’re not the only ones who helped keep OHSU operating.

“After getting to work on Tuesday morning, I found Chris Conrady [nurse practitioner in pediatric hematology and oncology], shoveling and salting the area outside Doernbecher’s tenth floor entrance before beginning his morning clinic,” shared Dana Braner, M.D., F.A.A.P., F.C.C.M., chair of pediatrics. “Chris embodies our can-do spirit and our willingness to go the extra mile for our patients and their families. We are so lucky to have his passion and dedication here at Doernbecher Children’s Hospital!”

Other employees submitted the following kudos:

“Out here at West Campus, our facilities staff have worked hard to clear sidewalks, roads, and parking lots. Our animal care staff have been incredible as well – working all hours. They are all amazing!”

“I want to give a shout out to the ladies in Pediatric specialties, especially our Lead Medical Assistant Denise Kiel. Denise not only got the messages out at 6 a.m. by phone, but she made it into clinic with several other co-workers, and they handled all the clinics within our floor. Denise always has a smile on her face and rises above adversities. She truly is a terrific leader and works by example.”

Do you have an OHSU snow experience to share? Leave a note of thanks or tell your story in the comments below.

A performance to remember

Brian Druker, M.D. and Uma Borate, M.D. chatting with Suse Skinner following her performance of her original song “The Good Ship OHSU.”

Brian Druker, M.D. and Uma Borate, M.D. chatting with Suse Skinner following her performance of her original song “The Good Ship OHSU.” Photo: Kris Wentz-Graff/OHSU

Seventy-year-old Suse Skinner lights up the room with her smile, positivity and humor. She is an artist, a caregiver, and was recently diagnosed with acute myeloid leukemia, or AML, a type of blood cancer.

From the moment she arrived at OHSU, “Suse was loved by all,” says Shelly Belknap, R.N. “Her pretty hats and bright blue eyes make any face mask a fashion statement, and we’ve gotten to know her well.”

This isn’t the first time Skinner’s battled cancer. In 2005, she was diagnosed with breast cancer. Four years ago, the cancer metastasized to her lung and back. Since then, she’s been taking a daily chemotherapy pill and monitoring it with PET scans that have shown no evidence of disease.

Things changed in July when Skinner visited her oncologist and learned that she needed to be hospitalized. The doctor recommended OHSU for treatment. She says this cancer feels different—more serious. In August, Skinner was admitted to OHSU for her first induction chemotherapy that included six days of 24/7 treatment followed by six weeks of recovery.

“It was obvious the very first evening at OHSU that the staff listen with their hearts,” says Skinner. “The nurses were angels to me. The team knows just how to care for you, and you know you are in good hands.”

During her recovery, friends gave Skinner a book with lighthouses and a jacket with colorful sailing ships. With that prompt and inspired by the care she’s receiving at the OHSU Knight Cancer Institute, she wrote a song to express her thanks. In her song, “The Good Ship OHSU,” Skinner spreads the love widely: to the many nurses involved, to her physicians Uma Borate, M.D., and Rachel Cook, M.D., to the people who keep her room comfortable and clean.

A performance to remember

On a bright December afternoon, Suse’s family, care team and those touched by her story from across OHSU, gathered in a community room on the 14th floor to watch her perform her song. A large crowd filled the space and spilled out the door and down the hallway.

“It’s humbling to hear your words and how our lives intersect,” Brian Druker, M.D., director of the OHSU Knight Cancer Institute shared after the performance. “Thank you.”

“Suse’s sense of humor and her family’s wonderful support have really kept her going,” says Borate. “I’m privileged to be part of her care team.”

Suse Skinner performing as “Suzani” a heart-themed clown nurse.

Suse Skinner performing as “Suzani” a heart-themed clown nurse.

A lifetime of healing and humor

Healthcare has always been a part of Skinner’s life. Growing up, her mother was a nurse and Skinner has worked as a home health aide for the last 20 years.

Thirty-five years ago, Skinner performed her first family-friendly singing telegram. At her mother’s suggestion, Skinner wore the cape from her nurse uniform and it was an instant hit. Soon after, a friend embellished the cape with hearts and piping.

Skinner created the persona of Suzani, a heart-themed clown nurse. When performing, she carries a medical bag with props and conducts “medical examinations” with fun, visual jokes. She’s appeared at parties and the Rose Festival parade, and says that people have been laughing at the same light-hearted jokes for more than 30 years.

It’s a family here

Katie Skinner watching her mother Suse’s performance.

Katie Skinner watching her mother Suse’s performance. Photo: Kris Wentz-Graff/OHSU

Skinner’s children—Katie and Ben—are integral to her care. “There’s so much to manage from appointments and care to treatments and medicine,” says Katie Skinner, who works in project management. “Ben and I approach mom’s care like a project to ensure she gets everything she needs and that everything gets done.”

“It’s wonderful here at OHSU, says Skinner. “Everyone knows who I am—from the nurses and the CNAs to the food service team and the housekeeping staff—and they treat me with integrity. It’s a family here.”

“Suse has a way of exuding love and hope regardless of what she is going through,” says Belknap. “We hope that we can provide that in return for our patients as well.”

 

Watch Suse’s performance

Watch KPTV coverage

 

Giving the gift of human experience

During this season of giving, among the precious gifts celebrated at OHSU is that of body donation, which provides health professions students invaluable experiences in practicing procedures and learning about the human body.

Each year, William Cameron, Ph.D., associate professor of behavioral neuroscience, organizes a special reception that brings together families who have donated the bodies of deceased loved ones to science and students across OHSU who have benefitted from this resource in their studies.

Following are reflections from three students who participated in this year’s reception, Dec. 2.

To my donor,

You have given me three gifts, and I am grateful for all of them. The first is a gift of knowledge. You have given me the opportunity to explore, experience, and learn. You have given me a map with which I can navigate the practice of medicine. You have helped my brain create new connections — real physical connections — that will stay with me throughout my life. I know you already live on through your loved ones. I want you to know that you live on through me too. Thank you for this gift of knowledge.

The second is a gift of belief. Your selfless act shows me that you believe in contributing to the world even as you move beyond it. It shows me that you believe in our mission of healing. It shows me that you believe in us as students and us as the future of medicine. Thank you for believing in me.

The third is the gift of this moment. As I look across this auditorium, I see the faces of your loved ones, and I remember that I am here not only to learn, not only to heal, but to be human. To share compassion and gratitude. To aspire to selflessness. To grow as a person. To do the important things that bring purpose and meaning to my life. I am here to engage in our deepest human moments. Moments that I will remember, forever. Thank you for reminding me why I am here.

On behalf of all our students, and from the deepest place in my heart, let me say it just one more time: thank you.

Henry Cameron Norris
Class of 2019, School of Medicine

The laying of hands

I’ve been calling you Maggie, because it seems to fit the set of your shoulders, the sway of your hips, because it rests well on the bridges of your cheekbones.

Maybe I’m hoping to see her in the arch of your nose, soft paper of your hands, maybe reaching toward the time she first helped teach me just how much my hands were good for. So much of this work I think is in learning to trust your hands. I’ve been calling you Maggie so that I don’t get lost in fascial planes and vessels and forget that you were more than flesh and bone. The holiness of skin I think is in its universal weight, in that the heart is placed the same in nearly all of us.

Your heart itself is wider than my two fists spread across, your hands so small, and I am small before the greatness of this gift, of such a miracle of this: to learn to touch.

Kayla Sheridan
Class of 2019, School of Medicine

Every good and perfect gift

When I think of what has been given to us, I immediately think of the Scripture, “Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” James 1:17

The invaluable gift that these special men and women gave is beyond words; therefore, I know without a shadow of doubt that it is indeed good and perfect!

The field of science brings both wonder and amazement. The contribution that was given by each person brought that wonder and amazement to life. They inspired me to search, question, do and thrive. They taught me to think beyond the “box” and understand that this world is much bigger than self. I will strive to touch and help people the way that these amazing human beings have done to both my classmates and me. The knowledge gained from this one of a kind experience cannot be compared to any that will be gained from this point on. I have been completely transformed by the kindness, selflessness and consideration that it took to make such a priceless decision.img_3573

As our time together ends, I wish to sincerely thank the beautiful man that provided me with education for a lifetime. I will keep him in my heart from this day on with the hope that I can pay it forward in my education, my career and my life. Many people will work their entire lives to leave an imprint on at least one person before they transition from this world, but your loved ones have left a legacy for hundreds of people both known and unknown that will surpass time!

May each family of each individual honored today enjoy their many blessings and find peace and comfort in knowing that your loved one will forever be an inspiration to us all!

Ryan Thrower
Class of 2020, School of Dentistry

 

 

 

OHSU Partners: Clinical Integration in Action

Fred Williams, M.D. has been a Neurosurgeon at Tuality Healthcare for over a decade. In that time, he hasn’t had a partner to collaborate with – until now. Tuality and OHSU are now formally linked through OHSU Partners. With that collaboration has come a partnership between Dr. Williams and Jeremy Ciporen, M.D., an OHSU assistant professor in neurological surgery, that is serving both of them – and their patients.

Tuality Healthcare is a nonprofit, community-based organization serving a market area of 350,000 and growing. The neurological affiliation between Tuality and OHSU is an example of an integration of the organizations’ clinical services. As the state’s only public academic health center with over 15,000 employees, OHSU’s size contributes to its ability to provide many services and community support not found anywhere else in the state.

Partnership in action             

Chief Medical Officer of Tuality Healthcare, Stuart Currie, M.D., believes that the affiliation with OHSU “represents a giant leap for the academic medical center to reach into the community and bring the expertise that they offer back to the community for a lower cost of care and at the same time, adding the strength of OHSU to a community hospital like Tuality to enhance our ability to continue to provide for our community.”

photo by Jeff Schilling/Tuality Healthcare

OHSU enables Tuality to “offer more neurosurgical care for our patients at the same time we’re bringing a higher level of complexity of care out to Tuality that we would not be able to do without such a close affiliation with OHSU” says Dr. Currie.

Dr. Ciporen, for his part, is thrilled to be working alongside Dr. Williams.

“I feel pretty blessed that it was Dr. Williams who I was paired with,” he said. “There is a lot of mutual respect and he’s an accomplished neurosurgeon and he’s just a great individual. There’s a lot that I’ve learned already, there’s a lot to be learned. I think we match up well. I think we have a symbiotic relationship. I also think our skill sets complement each other.”

Dr. Williams is proud of the neurological care Tuality has always offered, and he also sees the added value that Dr. Ciporen brings to Tuality.

“He’s really brought us up to the forefront in neurosurgery,” Dr. Williams said “Not just up to standard – we were living up to standard before – but he’s moved us beyond that.”

Dr. Currie says Dr. Ciporen enables Tuality to establish a neurosurgical program in western Washington County that can care for more patients and more complex cases.

“Dr. Williams has been practicing in the community for a number of years, and we needed more capacity in neurosurgery. A great sign of our new affiliation is OHSU happened to have a neurosurgeon who had an interest in working in a community setting and bringing his expertise,” Dr. Currie said.

Team Effort                

Dr. Ciporen said the collaboration has been a team effort by all involved with patient care prioritized throughout.

“I’ve been really impressed by the patient-centric nature of the people at OHSU that I work with every day and also by the people and caregivers and administration at Tuality,” he said. “I’ve also been impressed by how many people have mobilized and actually did what they said they were going to do to make things happen.”

Dr. Williams said he appreciates that OHSU sets a high standard, just as Tuality does. He believes that the affiliation will continue to benefit both institutions.

“If we look into the future, there’s going to be a need for a major hospital facility here,” Dr. Williams said. “We’re going to be doing the things that we’ve always done, and we do those very well, but we’re going to have to think about expanding what we can do so that we can handle more things. They can’t all be done up on the hill at OHSU. We need capability out here.”

Dr. Ciporen adds “we’ve approached it not just as a neurosurgeon going there to do more volume but to improve access in the outpatient setting and the inpatient setting and in the multidisciplinary care setting. And I think that’s where the future is going to be as well.”

 

 

 

 

Small town collaborations, big health dividends

National Rural Health Day is November 17. OHSU celebrates rural communities and rural health care providers everywhere. Meet a few rural Oregon providers – OHSU graduates – in the story below. Find how OHSU faculty and students are joining forces with rural communities to strengthen local care.

By Rachel Shafer and Erin Hoover Barnett

Alumni, faculty and students join forces with rural communities to strengthen local care 

The elderly woman arrived at the small emergency room with rib fractures and a collapsed lung. Jessica Carlson, M.D. ’11, inserted a chest tube and stabilized her, while thinking ahead to next steps. Dr. Carlson is one of two general surgeons covering the Level 4 trauma center at Curry General Hospital in Gold Beach, Ore., a community hospital serving the 22,000 residents of Curry County along Oregon’s remote South Coast.

OHSU Bridges Magazine -- Dr. Jessica Carlson (cq) OHSU grad 2011 is the new surgeon at Curry General Hospital in Gold Beach, Oregon. © 2016 Fred Joe / www.fredjoephoto.com

OHSU Bridges Magazine — Dr. Jessica Carlson (cq) OHSU grad 2011 is the new surgeon at Curry General Hospital in Gold Beach, Oregon. © 2016 Fred Joe / www.fredjoephoto.com

Knowing the patient’s high risk of contracting pneumonia and the hospital’s limited capacity for critical care, Dr. Carlson concluded: LifeFlight to OHSU. She remembers the patient’s response: “I don’t want to go up there because if I die, I’ll be by myself. If I’m going to die, my family is here.”

So Dr. Carlson and the nursing staff sprang into action, pulling a ventilator and telemetry and suction equipment into a room adjacent to the nursing station to create a temporary ICU. With the help of a respiratory therapist and nurse with critical care experience, they cared for the woman over several days and released her, much recovered, to her family.

It’s outcomes like this one that reinforce why Dr. Carlson practices rural surgery in Gold Beach and why she carves out time to teach OHSU medical students on rural rotation. Rural providers matter.

Across Oregon, communities big and small are grappling with systemic changes in health care. But rural medicine faces additional challenges: limited local resources in equipment, staffing and specialty expertise; patient populations with higher mortality and low birthweight rates, according to Oregon Health Authority; a continual thirst for providers; and long travel times – in some cases, a six-hour drive to specialized treatment.

For decades, OHSU School of Medicine has worked in Oregon’s small communities through its volunteer faculty, rotating students, residents, community researchers and, importantly, practicing alumni physicians and physician assistants.

In recent years, though, school leaders took stock of the school’s rural mission, saw room for improved collaboration and are now doubling down on efforts. Why? The aim is not to thrust an academic health center onto local providers, who are the experts for health care in their communities. Rather, it’s to support community-led collaborations and relationships, deploying OHSU resources to fill gaps where needed and partnering with local providers to improve the health of their communities.

“When your mandate is to improve the health of Oregonians, you don’t get there by bringing everyone to Portland,” said Mark O’Hollaren, M.D. ’80, OHSU vice president for strategic outreach. “OHSU’s resources are finite, but we have been able to partner with a number of rural communities to improve access to care closer to home, conduct community-based research reflecting the needs and conditions of all Oregonians and help seed the next generation of rural providers through education and training programs far from the Portland metro area.”

 “A little piece of home”

Jane Johnson had at least one bit of good news when she woke up from her colonoscopy. She’d be able to stay in her North Coast community for much of her cancer care.

Driven by need a decade ago, the mayor of Astoria and leaders of the medical community reached out to OHSU, and together they’ve launched a series of collaborations that bring physicians at Columbia Memorial Hospital and OHSU together. The arrangement means that, in many more instances, medical care and procedures can be performed at Columbia Memorial Hospital. For Johnson, it means seeing her oncologist in Astoria as well as getting her chemotherapy port installed at Columbia Memorial Hospital by Rachel Van Dusen, M.D., assistant professor of surgery in the OHSU School of Medicine.

Then, when Johnson needed major surgery to remove her tumor, Dr. Van Dusen met her in the operating room at OHSU. Seeing Dr. Van Dusen before her surgery, Johnson said, “was like having a little piece of home.” Follow-up care has been in Astoria, including a recent visit with Dr. Van Dusen to discuss additional surgical procedures.

Dr. Van Dusen and Columbia Memorial Hospital leaders note that the focus needs to be on the providers – from CMH and OHSU – doing as much as they can at the community hospital; the collaboration should not become a one-way ticket to doing more procedures at OHSU.

The arrangement also benefits the local hospital and economy in other ways. Erik Thorsen, CEO of Columbia Memorial Hospital, says the hospital has grown by more than 15 physicians and estimates the economic ripple at 150 jobs in the community.

“It’s been a rewarding thing to watch the organization – and our community – grow,” said Thorsen, who grew up on the North Coast. “The community also sees value and takes pride that OHSU is here and that CMH is increasingly associated with the quality of OHSU.”

In addition, the arrangement means that physicians drawn to rural health care who also want the professional experiences possible in an urban medical center can have both. For Dr. Van Dusen, the collaboration with OHSU that her stepfather, longtime Mayor Willis Van Dusen helped convene, clinched her decision to practice in the town where she grew up.

“I didn’t think I could find a position I loved and do the surgery I wanted to do,” Dr. Van Dusen said. “This affiliation with OHSU came up, and it worked out perfectly.”

The Astoria clinical collaboration is just one of dozens playing out across the state, including those affiliated with the OHSU Telemedicine Network. Using secure, two-way video and audio communications, the network gives providers in community hospitals throughout the region immediate access to OHSU specialists, improving patient outcomes, avoiding unnecessary transports and helping rural Oregonians get well in their home communities.

Easing stress

Family physician Jon Schott, M.D. ’96, sees patients in the town where he grew up: Baker City, Ore., pop. 9,828, nestled in the mountain and sagebrush country of northeastern Oregon. Dr. Schott first began practicing there in 1999. “I had no business background, and coming out of residency into a frontier area felt – despite great training – completely overwhelming,” he said. “Connecting to OHSU was a survival mechanism.”

That connection was and continues to be L.J. Fagnan, M.D. ’71, professor of family medicine in the OHSU School of Medicine. Dr. Fagnan describes himself as a former country doc-turned community organizer. He logs significant “windshield time” attending meetings with rural, primary care practitioners around the state as director of the Oregon Rural Practice-based Research Network.

ORPRN staff provide technical assistance and quality improvement resources to aid in practice improvement. They disseminate best practices among clinics. They deliver education and skills training to help practices become medical homes. And they conduct research, investigating clinical questions in partnership with rural providers – linking questions from primary care practices to answers from practices.

In Baker City, an early project with ORPRN involved partnering with Baker City’s health department to increase pediatric immunization rates. “That led to not only increased rates in our area, but to a partnership that still exists today, which has grown from immunizations to include women’s health issues and a clinic located in the high school,” explained Dr. Schott.

ORPRN’s approach is not to tell rural providers what to do, but to facilitate and provide resources that enable practices to innovate and improve on their own. “It’s a stressful time in medicine,” said Dr. Fagnan. “We want to ease the stress on practices.” That’s the job of OHSU employee Steven Brantley, M.P.H., who is based in Ashland. A practice enhancement research coordinator, Brantley works full-time on Healthy Hearts Northwest, a federally funded project coordinated through organizations like ORPRN that help small- to medium-sized primary care practices build a quality improvement structure, while also working on improved heart health outcomes.

On a bright, fall morning, Brantley is in Klamath Falls, leading a meeting with providers and clinic managers at Cascades East Family Medicine. The discussion revolves around progress on the clinic’s smoking cessation efforts. Data are reviewed, survey results examined, problems and ideas aired. There is an easy banter in the room, but also an urgency from clinic staff. Patient health is at stake. Cascades East is doing good work, observes Brantley. “I want to take what they’re doing and share it with everybody else because it’s effective,” he said.

The needs of rural providers are as different as the communities they serve. ORPRN’s knack is to find commonalities and nurture solutions. “It’s my firm belief,” said Dr. Schott, “that our clinic in Baker City wouldn’t exist if not for our relationship with ORPRN.”

Skin in the game

The enormous topographical state map hanging on the wall in the office of Paul Gorman, M.D., keeps this assistant dean for rural medical education in the OHSU School of Medicine focused on his goal: place more medical students into more specialties completing more clinical experiences with more rural physicians across Oregon to increase the number of graduates entering rural practice. Currently, 350 alumni out of 2,276 total physicians practice in rural Oregon.

Dr. Gorman is the first leader in the school’s administration dedicated solely to rural medical education. “School leaders recognize the importance of rural medical education as a keystone to the school’s mission to serve all of Oregon, and we’ve redoubled our commitment,” said Dr. Gorman. “We know this is not a short-term effort. We are in it for the long haul.” Moreover, he added, it’s not what communities can do for the school but what the school can do for communities.

Dr. Gorman began his career in rural medicine. Over the years, he’s seen it change. “In all but the smallest towns, there is more technology and specialty care available than a generation ago,” he said. Rural medical education must also adapt by diversifying the spectrum of specialties available to students, Dr. Gorman says. Completing a rural clinical experience was and continues to be a requirement of the school’s M.D. curriculum. In fact, the school’s new curriculum, YOUR M.D., expands this by offering students the choice to experience an array of rural careers. Curious about rural cardiology? Rural emergency medicine? Rural surgery? Students can now sample specialties during rural rotations as well as the broad-based practice of primary care.

Dr. Gorman is the first to acknowledge the school needs to do a better job of strengthening relationships with rural communities and providers.

The school is also challenged to promote rural medicine to M.D. students from within the environs of Portland. But that’s where Nick West, Abbie Huddleston and Emily Thompson come in. Second-year medical students hailing from Imbler, Seaside and Heppner, respectively, they’re passionate about returning to rural Oregon. All of them participate in the state’s Scholars for a Healthy Oregon Initiative, in which the state provides funding for student tuition and fees in exchange for a commitment to practice in a rural and/or underserved area for a given period.

During their first year, the trio wondered why there weren’t more rural activities in the new curriculum. So they set out to fix it. With Dr. Gorman’s help, they launched the Rural Medicine Discovery Program. Between course blocks, any M.D. student can sign up to take enrichment trips to rural communities around the state. There, they precept with a physician, eat dinner with local practitioners to get a feel for the provider network, talk to local high school students about health care careers and enjoy activities such as surfing, visiting museums or biking through the countryside. The trips have become popular with M.D. students. Sign-ups feature waiting lists, and the three have heard from fellow classmates who have become “stoked about rural medicine,” as West put it.

The idea is to ground students in real experiences so they can envision all that a rural commitment entails, the three say. “Rural people distrust the health care system when they have transient physicians,” said West. “Small communities want longitudinal health care, whether that’s the cardiologist, surgeon or family physician.”

West, who grew up on a cattle ranch, added, “We need physicians who are riding for the brand, so to speak. They need to have skin in the game. Rural physicians need to be there, regardless.”

Small town life

Dr. Jessica Carlson of Gold Beach is invested. She’s wanted to live and work on the Oregon Coast ever since rotating in Florence, Ore., as an OHSU medical student. She bought a house in Gold Beach and has joined local clubs. She’s planning outreach activities to local K-12 students. She shops at local businesses. And at work, she considers herself more than just a surgeon. Her personal mission these days is preventive care such as mammograms, she says, because she’s performed a lot of breast cancer surgery on Curry County women. Every woman of a certain age who comes to her clinic now gets a mammogram, she says. If they express hesitation or anxiety about it, Dr. Carlson walks them over to the hospital and sits with them to give them support.

During a break between patients in the small, florescent-lit office she shares with a fellow surgeon, this rural doctor reflects on her definition of success.

“What do I need to do to improve health care as a whole for this community? That’s my job. My job is not to take out a bunch of gallbladders and fix some hernias, and say, ‘Thanks, it’s been fun.’ My job is to look at how I can improve people’s health. If I can provide care for them here, it’s better for them and better for our community.”

New OHSU Campus for Rural Health

Last year, OHSU launched a new university-wide initiative to better support the diverse, health needs of rural Oregon. The OHSU Campus for Rural Health, with academic headquarters in Klamath Falls, is comprised of distributed, learning sites around the state where OHSU medical, dental, nursing, pharmacy and physician assistant students live and learn together.

Students gain valuable, interprofessional experiences in rural clinical settings while immersing themselves in local health issues by participating in a longitudinal, community-based project. Current sites are located in Klamath Falls and Coos Bay, and OHSU is exploring possibilities for a new site elsewhere in the state.

The initiative builds on existing concentrations of OHSU resources and programs around the state to formalize and strengthen learning and teaching outside the Portland metro area.

Studies show that exposing more students to rural areas will directly affect how many people go into rural practice, says Joyce Hollander-Rodriguez, M.D. ’00 R ’03, regional associate dean for the Klamath Falls site. “And even if they don’t go into rural practice, they will apply that knowledge when they see rural people in urban settings.”

Another goal of the sites is to provide organized professional development and training for local practitioners who are teaching OHSU students. “In transforming students into strong, interprofessional providers, we are also transforming ourselves into better providers,” said Dr. Hollander-Rodriguez.

To meet facility needs in Klamath Falls, OHSU and Sky Lakes Medical Center are joining together on the construction of a collaborative health care building.

 

Moving forward: A message from OHSU President, Joe Robertson

This week’s presidential election has caused a sense of vulnerability and concern about the future. The heated and, too often, hateful rhetoric that punctuated the campaign season has made the results of this election feel very personal for many.

In several cities, including Portland, this has led to protests that in some cases have become violent, a response that is never constructive and counter to our core values as healers. At times like these we must remember and reaffirm our core values as an institution — particularly our commitment to diversity, equity and inclusion. We must remain steadfast in our drive to be a great organization, diverse in people and ideas.

We are a community of people dedicated to healing — and sometimes that includes healing each other. We need to learn from this experience and help each other and our community to engage in healing and healthy dialogue. Part of the healing process must involve taking positive action.

The results of this week’s election have also left many of us thinking about the future of health care in our nation and the impact on our mission of improving the health of all Oregonians. I can assure you that we will continue to work with state and federal leaders to advocate for the quadruple aim and for access to health care for all.

There may be changes to public policy that impact the work we do. As these proposals are detailed in the coming weeks, we will have additional discussions about what this means for our institution. In the meantime, let’s continue the important work that we are doing today.

In this time of change and disruption, I encourage each of you to take time for yourself, your family and find strength in how we serve and care for one another.

This message originally appeared in a Directline email to staff from OHSU President, Dr. Joe Robertson

Why 96,000 Square Miles?

OHSU Health Fair at Pioneer Square.

President Robertson is fond of saying that OHSU has a 96,000 square mile campus, serving Oregonians “from Enterprise to Coos Bay, from Portland to Klamath Falls.”

This blog aims to highlight that breadth. 96,000 Square Miles (96K for short) will focus on the people of OHSU, the Oregonians we serve and the ripple effect of our work in Oregon and beyond.

Read more

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