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Archive for October, 2018

My Journey with the BRCA1 Gene

Jen Culton and her sister, Mickey Holthe, each tested positive for the BRCA1 gene. 

 

On July 9, 2014, my family’s life changed. My sister, Mickey Holthe, was diagnosed with breast cancer. She did the genetic testing and was positive for the BRCA1 gene. Her wish for our siblings was for each one of us to be tested. I was very against it but did it for her. The day the call came in that I was also positive for the BRCA1 gene my life changed completely.

Mickey introduced me to Brandi Preston who became a huge activist for hereditary cancer after losing her mother to breast cancer. She also had a preventive double mastectomy at a very young age. Brandi is also the founder of Hereditary Cancer Foundation, as well as the creator of a private Facebook page for support. This page has been so helpful and generous. Brandi is very passionate about being proactive and travels across the country to share facts about the gene and risks associated with it.

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Jen Culton with BRCA Support Group Leader Brandi Preston

My first step was a hysterectomy. I knew we were done having children and the gene also increases risk for ovarian cancer. This surgery was done within several months of my diagnosis.

The mastectomy on the other hand was a more difficult decision. I was not in a great state of mind and felt like I was living with a black cloud over my head! After four years of mammograms and MRIs every six months, the fear of getting that call saying they found a lump became too much, I knew it was time to be proactive.

Watching my sister go through chemo and losing her hair was the most devastating process for our family. She kept telling me, “You are in the driver’s seat.” Brandi also was a huge advocate for me to get the ball rolling. I met with several plastic surgeons to find the right one for me. Brandi and Mickey suggested Janet Grange, M.D. who specializes in breast surgery, for the mastectomy and Perry Johnson, M.D., who practices at Village Pointe Aesthetic Surgery, as my plastic surgeon. After my consultations, I knew instantly they would be my surgeons.

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Jen Culton before surgery in August, 2018

My surgery was scheduled for Aug. 20, 2018. Two months prior the anxiety started. No appetite. Couldn’t sleep. My doctor had to put me on Xanax for nighttime. I was most worried about the drains. And I mean SCARED! The thought of four drains coming out of me really freaked me out!

But the weekend before my surgery, I suddenly felt like all my anxiety was gone. I was in complete shock, I was ready to put this chapter behind me. Even the morning of the surgery I was in a great state of mind and was ready. I will admit, I had a moment when I was wheeled into the surgery room. Luckily, Dr. Grange was at the end of my bed and reassured me it was the right decision. She even came over and grabbed my hand until I was under. I will be forever grateful for that moment!!

To be honest, the drains really were not nearly as scary as I thought they would be. Maintaining them was not nearly as difficult as I thought, thanks to my wonderful hubby, Dustin!

I now have expanders, which need to be filled weekly.  Expanders are temporary implants that stretch the skin. Stacey Sanders is the nurse practitioner at Village Pointe Aesthetic Surgery. Stacey has shown me so much support and kindness through this process. I consider her a friend now. Dr. Johnson and his office have been AMAZING during this process! The “exchange” surgery was scheduled for Nov. 19, 2018. The expanders will be replaced with permanent implants.

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Jen Culton with Village Pointe Aesthetic Surgery Nurse Practitioner Stacey Sanders

My family and friends have been so supportive and amazing through all of this! My husband and daughters, Abby, Sammi and Daisy, stepdaughter Megan and son-in-law Anthony, who is serving our country overseas, have been my rocks! Also, my best friend of almost 40 years, Denise Bowers, has always been by my side to support me through all of this – including flying in from North Carolina to participate in the Race for the Cure here in Omaha.

I’m forever grateful to Mickey who motivated me to have the genetic testing completed. Mickey’s cancer diagnosis opened my eyes to the risks associated with carrying BRCA1. Without her victory in defeating cancer, it could have easily been me who received the diagnosis, which could have been too late.

The journey has been difficult, but with the support I’ve received and with my husband by my side, I was able to get through all of the ups and downs of this adventure.

I don’t regret surgery at all, even though recovery has been painful. It’s the best decision I ever made! My chances of getting breast cancer went from 87 percent to 3 percent. My gene is from my dad’s side of the family. He died from prostate cancer. One of my cousins was the only one diagnosed with breast cancer before my sister. My advice to anyone else in this situation: Be proactive! Get checked!

About the Author

Jen Culton
Previvor

Double-Lung Transplant Patient Brings Organ Donation Message to Corporate Cup

On a brisk Sunday morning in September, Eric Horpedahl woke early to do something he once thought was impossible – go for a two-mile walk. The 32-year-old joined more than 5,000 walkers and runners in Omaha for the city’s annual Fight for Air Corporate Cup event. The race marked a yet another milestone for Eric who underwent a double-lung transplant at Nebraska Medicine only eight months earlier.

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Eric Horpedahl proudly displays his medal after finishing the Corporate Cup.

As a child, Eric was diagnosed with cystic fibrosis, an incurable disease that causes extensive lung and breathing problems. For most of his life, Eric was largely unaffected by his condition. But in July 2017, his health quickly began to decline. He found it difficult to walk even a few feet without struggling for air.

Eric traveled from his home in Sioux Falls, South Dakota, to Nebraska Medicine where he sought the help of Aleem Siddique, MBBS, and the lung transplant team. In January 2018, the team put Eric’s name on the transplant waiting list. A short three weeks later, a donor was found and Eric underwent surgery to receive two new lungs.

After being discharged from the hospital, Eric remained in Omaha to begin rehabilitation. He worked with physical therapists at Nebraska Medicine to rebuild his lung strength and improve his overall fitness. Once he was ready to go home, the physical therapists recommended that he continue an exercise program to keep his health in check.

And he listened. Eric joined a gym and began a new routine that now includes five workouts a week consisting of cardio and strength training. Eric says he wasn’t active before his lung transplant, but he has new motivation to go the gym.

Eric is also motivated to spread the word about organ donation. His participation in this year’s Corporate Cup wasn’t just about exercise. Although exercise is now key to his life, Eric’s walk was about the opportunity to raise awareness of organ donation. Organ donation is a cause that is near and dear to his heart – and lungs – and he hopes to use his story to inspire others to give.

Nebraska Medicine, UNMC Sends Ebola Response Team to Uganda

 

Nebraska Medicine and UNMC have responded to a request from an international agency to send a team of infectious diseases experts to Uganda to help prevent the spread of Ebola.

In response to the second outbreak of Ebola virus in the Democratic Republic of the Congo (DRC) this year, Nebraska Medicine and the University of Nebraska Medical Center (UNMC) sent a team of infectious diseases experts to the East African nation of Uganda to help prevent the spread of the deadly disease.

Uganda shares a border with the DRC provinces of North Kivu and Ituri, where health leaders in the area declared a new outbreak of Ebola virus disease in early August. The United Nations High Commission for Refugees reports that hundreds of refugees cross that border from the DRC into Uganda every day.

James Lawler, MD

“The best way to prevent a global spread of the disease is to contain it in the country where it starts,” says James Lawler, MD, an infectious diseases expert and leader of the team working in Uganda. “UNMC and Nebraska Medicine are uniquely prepared to provide training in a situation like this, and our experience as one of four U.S. hospitals to successfully treat patients with Ebola during the West Africa outbreak in 2014, along with subsequent training and quarantine efforts have made us a world leader in this arena.”

“The clinicians and staff from the Nebraska Biocontainment Unit have the infectious disease expertise and experience to share their knowledge and insight,” says Robert Kadlec, MD, assistant secretary for preparedness and response at the U.S. Department of Health and Human Services. “Their collaboration with health care workers helping to prevent the spread of the Ebola outbreak in the DRC is critical to our global health security.”

Medical Teams International, which provides support for refugees fleeing violence in the DRC into Western Uganda, requested help from the Nebraska Medicine/UNMC team. Our team, consisting of one doctor, three nurses and a respiratory therapist, was tasked with training frontline health care workers who are screening refugees at health clinics and intake stations associated with refugee camps in Western Uganda.

The team was not tasked with providing direct care for any patients diagnosed with Ebola while in one of the camps. While other United States citizens also are taking part in the effort, the Nebraska Medicine/UNMC team is the only U.S. academic medical center providing organized support.

“We are honored and humbled to have been asked to assist in this effort,” says Jeffrey P. Gold, MD, chancellor of UNMC and the University of Nebraska at Omaha. “Our mission is to lead the world in our areas of expertise, and this is certainly one of them. The establishment of the Global Center for Health Security here last year positions us not only as one of the few institutions which could provide a response to a crisis such as this, but also as one that should.”

Members of the team at the Nyakabande Refugee Transit Center.

The Global Center for Health Security was established at UNMC/Nebraska Medicine in 2017, and in 2019, the National Center for Health Security and Biopreparedness will open on campus in the new Davis Global Center for Advanced Interprofessional Learning.

It will feature quarantine facilities and highly specialized simulation training labs to prepare federal health care personnel and others to care for and conduct procedures for patients with highly infectious diseases.

Experts agree that the situation in the DRC will only worsen without international assistance, making it possible that it could mirror the African outbreak four years ago, which killed more than 11,000 people.

Members of the team left Omaha on Sept. 25, flying to the National Institutes of Health in Bethesda, Maryland, to be vaccinated with an experimental Ebola vaccine along with a vaccine for yellow fever. They then travelled to various areas of Western Uganda and began training local health care workers beginning on Sept 29.

The vaccine, which Nebraska Medicine/UNMC used in a prior outbreak, has shown promise in stemming the tide of the disease during previous recent outbreaks. The team members are expected to return to Omaha Oct. 5.

Members of the Nebraska Medicine/UNMC Nebraska Biocontainment Unit cared for three patients during the Ebola crisis of 2014. Since then, members of UNMC/Nebraska Medicine team have traveled the nation and the globe training others in how to treat patients with highly infectious diseases.

New Heart Procedure Helps Mitral Regurgitation Patients

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For 78-year-old Viola Foley, nothing brings a bigger smile to her face than talking about family, country music or Nebraska Medicine.

“I tell everyone that the nicest doctors in the world work here,” she says. “They saved my life more than once.”

After raising nine children in Springfield, Neb., Foley underwent a liver transplant at Nebraska Medicine – Nebraska Medical Center and battled breast cancer twice.

“I was diagnosed with breast cancer six years before my liver transplant, then again four years later. It’s amazing how far I’ve come.”

Once Foley passed the 10-year mark for her transplant, she started having serious breathing problems. Walking across the living room was almost impossible. In September, she made an appointment with Nebraska Medicine cardiologist Thomas Porter, MD.

“Dr. Porter did an echocardiogram,” remembers Foley. “He discovered that my heart and liver were working against each other. One of my heart valves wasn’t opening and shutting the right way.”

In September, Foley was diagnosed with mitral regurgitation (MR), a condition that affects four million people in the United States. The heart’s mitral valve leaflets don’t close tightly, causing blood to flow backwards from the heart’s left ventricle into the left atrium. It makes the heart work harder at pushing blood through the body, leading to shortness of breath, fatigue and worsening heart failure. For many patients, open-heart mitral valve surgery is generally recommended, but for Foley, surgery wasn’t an option.

“She currently has a life threatening blood disorder that prohibits her from having any open surgical procedures,” says Michael Moulton, MD, chief of cardiothoracic surgery at Nebraska Medicine. “Her only shot was to have the MitraClip procedure, which was recently approved by the U.S. Food and Drug Administration.”

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The MitraClip procedure is a new option for patients diagnosed with MR, who have too high a risk for surgery. The procedure consists of implant catheters and the MitraClip device, which is a permanent implant that attaches to the mitral valve leaflets, reducing the leakiness of the valve.

On October 1, Foley became the first patient to undergo the procedure at Nebraska Medicine. With the help of a catheter, Nebraska Medicine chief of interventional cardiology, Gregory Pavlides, MD, inserted the MitraClip device through a blood vessel in Foley’s groin, guiding it to her heart. The surgical team could watch in real time on the echo machine if the mitral regurgitation was appropriately reduced. Once the MitraClip device was in place, the catheter was removed.

“This procedure requires a lot of skill from interventional cardiology, imaging cardiology and anesthesia,” explains Dr. Pavlides. “Not many places in the area have the infrastructure to offer the MitraClip procedure as well as we can; based on our experience with the mitral valve and our superb imaging and cath lab skills.”

Learn More About the Innovative MitraClip Procedure
Are you a candidate? Connect with a member of the heart care team regarding the MitraClip by calling 800.922.0000 or visiting our website.

Foley’s procedure took approximately one hour and 30 minutes. She spent a little over three days in the hospital before going home. Since then, she’s regained her strength, is able to walk up and down the stairs and feed her pets without feeling fatigued. She’s excited for the next chapter in her life, which includes watching her great-grandson attend the University of Nebraska Medical Center with the hopes of becoming a cardiologist.

“I am forever grateful,” says Foley. “I wouldn’t be here today if I didn’t have this option. I’m really proud to be the first patient at Nebraska Medicine to have the MitraClip procedure. Couldn’t have asked for a better crew or a better place.”

 

Extraordinary Care – Our Patients Agree

Nebraska Medical Center has earned a 2017/2018 Consumer Loyalty Award from Lincoln, Nebraska–based patient experience firm NRC Health.

The award recognizes hospitals across the country that garner extraordinary loyalty from their patients. This is the award’s inaugural year, which gives its winners a singular distinction. Nebraska Medical Center was No. 6 out of 100 award recipients that were selected based on results from NRC Health’s Market Insights survey, the largest database of health care consumer responses in the country.

“This type of recognition is especially meaningful because it comes from the patients we serve,” says Nebraska Medicine CEO Jim Linder, MD. “This is the kind of result that comes from dedicated physicians and staff working together for the benefit of their patients.”

NRC Health surveys more than 310,000 households in the contiguous U.S., measuring their engagement with health care brands in their communities. Organizations that win the Consumer Loyalty Award score exceedingly well on seven different measures of patient loyalty, including access, engagement, experience and net promoter score.

 

To schedule an appointment with a specialist at Nebraska Medicine, call +1-402-559-3090 or OIHS@nebraskamed.com.

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