Supporting Family & Friends – Liver Disease & Breast Cancer Awareness

For the month of October, CREA is proud to recognize both Liver Disease Awareness and Breast Cancer Awareness by making contributions to the American Liver Foundation and National Breast Cancer Foundation, respectively. Our support will help these organizations fund important research, activities, education and advocacy efforts to generate more positive outcomes and strive for effective treatment approaches.

 

American Liver Foundation

Formed in 1976 by the American Association for the Study of Liver Disease (AASLD), the American Liver Foundation aims to promote education, advocacy, support services and research for the prevention, treatment and cure of liver disease. American Liver Foundation provides financial support for medical research, education for medical professionals and information campaigns for patients, families and the public. As one of the ten major causes of death in the United States, American Liver Foundation serves as a voice for the 30 million Americans with liver disease and works to make a measurable difference.

 

National Breast Cancer Foundation

Founded in 1991 by breast cancer survivor, Janelle Hail, the National Breast Cancer Foundation is committed to educating women around the world about breast cancer and the importance of early detection. The National Breast Cancer Foundation seeks to fill in the gaps of cancer care, ensure every woman has access to necessary information through their journey, and provide mammograms, patient navigation services and breast health education services to women in need.

 

CREA Connection – Nancy Havlin

The CREA family is especially passionate about supporting liver disease, because one of our employees, Nancy Havlin, has a deeply personal connection. Here is a glimpse of her unique story.

Nancy has been with CREA since 2012, starting as an Administrative Assistant and transitioning to her current role as Senior Office Manager within Portfolio Management. Nancy loves the diverse responsibilities of administrative work and the challenge of working across departments. Outside of work, she enjoys volunteering for the Indiana Donor Network and American Heart Association, travelling to new places and spending time with her children and grandson.


Discovery


When Nancy was 29 years old, she began experiencing concerning health issues. After various blood tests, she received the diagnosis of chronic liver disease. There is no cure; she would suffer liver failure in its final stages and would most likely need a transplant. From that day forward, her life perspective was changed.


Specifically, Nancy was diagnosed with Primary Biliary Cholangitis (PBC). Broadly, PBC is an autoimmune disease where the body slowly destroys bile ducts in the liver until they quit working. This builds up excessive scar tissue in the liver, or cirrhosis, which causes liver failure. While autoimmune diseases can be passed genetically, no one in Nancy’s family had the disease. Medication can slow down the progression of PBC, but there is nothing doctors can do to help prevent nor control the intense symptoms and inevitable liver failure.


When Nancy was diagnosed with PBC, her children were six, four and one years old. She tried to hide her symptoms—severe itching, persistent fatigue, jaundice, and water retention, making her look twice her size—but when her kids were in high school, reality caught up with her. Her children learned their mom’s liver was failing and in turn became caretakers themselves. They helped her walk when leg cramps became unbearable and knew they must call 911 if she became belligerent or irrational. Nancy even set up a videographer for her son’s graduation in case she could not make it.

Nancy regularly underwent an educational course, multiple physical tests (pulmonary and heart stress tests) and meetings with a psychiatrist. She recalls a psychiatrist believing she was suicidal when she mentioned that she was happy to keep someone else from enduring the unrelenting pain. It was a humbling experience to have her peers watch her health decline and make plans for her to work from home.


The Next 14 Years


For 14 years, she was monitored while her health continued to worsen. Nancy entered stage four cirrhosis in the liver and could finally be referred to a medical team to see if she was a good candidate for a liver transplant. Essentially, individuals must be sick enough to be on the transplant list but well enough to sustain a multi-hour invasive surgery. In other words, it’s a very fine line between those who qualify for transplant or do not.

In December 2009, Nancy received a call at work: She was placed on the transplant list. Both “terrified and elated” emotions consumed her.

Two weeks later, on Christmas morning, Nancy answered another call. This time, she needed to be at the hospital by 8:30 the following morning to receive her organ transplant. After undergoing surgery preparation, ready on the table, she was heartbroken to hear that the organ was not viable. Nancy was sent home, health rapidly deteriorating and suffering tremendous pain. But still on the list.


Someone is added to the transplant list every 10 minutes. The number of people in the United States on the current transplant list could fill up Lucas Oil Stadium twice. Meanwhile, 20 people die every day while waiting on that list.


However, Nancy and her family never allowed themselves to think that she would not get the call. They focused their energy on staying positive—on getting the call she needed to save her life. Nancy acknowledged, “I knew my body was shutting down. I was dying. But I cannot, and will not, be negative. Life is too precious.”


Four months later (May 2010), her life was again changed. A viable liver became available for her, and she underwent a successful transplantation. She was in the hospital for eight days and donated her diseased liver for scientific research.


The day she had longed for had come; her life had been saved.


Recovery


It was overwhelming to return home, the amount of medication she was on and the pain and discomfort she felt. For three months, she had to go to the clinic three days per week for various evaluations. Nancy missed work for 2.5 months, then slowly came back part-time, four days per week.


This year, Nancy celebrated her 12-year anniversary of her liver transplant!


Today, Nancy is healthy, but she will always suffer with chronic liver disease and the fear of it coming back to attack the transplanted liver. Nancy is still closely monitored for organ rejection with lab testing every three months.

She has seen her mortality. She is scared that her body will reject the organ or medication and she will have to go through this again. Sometimes people do not realize she was dying and how hard this was and continues to be. Nevertheless, she does not want to share her story through sadness.

Nancy chooses to stay upbeat, saying: “You have to be positive; I am too young to not keep pushing forward with the life I have been gifted.”

Her family members are all registered organ donors, dedicated to sharing their story and participating in Nancy’s victories. This journey has affected them all for a lifetime.


Outlook & Outreach


Given everything she has endured, Nancy is devoted to supporting liver disease and organ donation and transplantation efforts. She assists in booths at different Indiana events to raise awareness about organ donation. She spends most of her volunteering time with the organization that matched her with her transplant family, the Indiana Donor Network. Nancy goes to middle school health classes to share her story and educate students on organ donation and transplantation. A touching initiative Nancy is involved in is crocheting comfort shawls and teddy bear scarves for the heartbeat bears (the heartbeat of an organ donor is recorded before taking them off life support, which is then sewed inside a teddy bear) that are given to donor families.


Moreover, unique events that Nancy holds dear are the National and World Transplant Games. Every two years, transplant recipients, living donors and donor families participate in low, middle and high-impact Olympic games. Nancy is a five-time participant in The National Transplant Games and played in the 2019 World Transplant Games. The World Transplant Games, put on by the World Transplant Games Federation, serve the purpose of “promoting education around transplantation in order to promote the physical success of transplant surgery and the need to raise public awareness and increase organ donation.” As icing on the cake, Nancy won gold in Bowling Singles and Bowling Women’s Doubles in the 2019 World Transplant Games!


Her passion for the Transplant Games comes from the invaluable relationships she has built with others. It is an unrivaled opportunity to be immersed in a community that truly understands her journey—the difficulties, the recovery process, the scare of not getting a call or potentially going through it again. Transplant recipients are considered medically fragile, so she never knows if the same people will be in attendance the following year. Tragically, she lost her bowling partner last year, so every event is a gift she cherishes.


Currently, Nancy is working on a fundraiser with Team Indiana for the National Transplant Games: Through Artery Ink, she is creating a design on clothing that will continue to raise awareness about organ donation and transplantation. In April 2023, Nancy is looking forward to representing Team USA again at the World Transplant Games in Australia! She is thrilled to take part in the bowling and Pétanque competitions this time.


In reflecting upon her journey, Nancy is more grateful for the blessings she has been given than anything else—the first being her life. The community she has embraced through the Transplant Games is irreplaceable. Opportunities to raise awareness and educate the public have allowed her to voice her story and offer support to others in important ways. This is still an incredibly emotional and humbling experience for her to relive—and continue to live.

Asked to give one final thought, Nancy beautifully expressed, “enjoy every moment of each day, because each day is a gift. I have experienced the gift of life.”

We are so fortunate to have such an inspirational, passionate, bright and caring individual in our CREA family. Thank you, Nancy, for transparently sharing your unique and special story.