Elizabeth (Burrus) Barnett, 41, is no stranger to hospitals.
Born with a heart defect, she spent about a month at the Mayo Clinic in Minnesota in 1986. Her photo and an article about her time at the clinic was featured on the front page of The Salem News. She sat smiling with a teddy bear she received from friends and well-wishers from her hometown.
A few hours after birth, Children’s Hospital in St. Louis diagnosed eight defects in her heart. The most pressing defects were a single atrium, a single ventricle and a dextrocardia. Those conditions caused used and cleaned blood to always mix. This caused her to never have enough oxygen in her blood, and feel tired most of the time. Normal numbers are between 90-95 percent oxygen in the blood. She had no more than 27 percent at any given time.
Dextrocardia, the third major issue, causes the heart to flip from the left side of the body to the right. A common occurrence is the stomach and liver following suit, but Elizabeth’s organs stayed in the correct position.
Her first heart surgery was a modified Fontan – a method developed by Dr. Fontan at the Mayo Clinic about a decade before Elizabeth’s visit. The surgery redesigned her heart, which can prove to be a greater shock to the system than a transplanted one. Other organs must learn to work alongside the properly working heart. Her oxygen level increased to 80 percent, which caused pressure and fluid in her lungs, as well as a multitude of other issues in the days after surgery. Her entire system was in shock and two surgeries occurred in the nine days after her initial Fontan procedure.
At six years old, her least favorite medical item was the oxygen mask, said her mom, Cathy in the article from 1986. Her favorite was her E.T. finger light – the then, newly-developed oximeter measuring her blood oxygen level.
“People in this community (Salem) have just been wonderful,” said Cathy. Elizabeth received hundreds of cards, gifts, and care packages as she spent a month away from home.
Cathy and family moved away from Salem for the next 20 or so years. Elizabeth still remembers fondly her time during summers in Salem with grandparents and other family.
“At the time it was a palliative surgery designed to enable kids to maybe see their teenage years. Well, not only did I see my teenage years, but I went to college, worked full time as an HR Manager and lived a full and active life,” said Elizabeth on her blog in recent months.
Most recently living in Milton, Florida, the Barnett family – Elizabeth, husband Zachary and step-children Zoey and Gavin, will move to Salem full-time ahead of the 2021-22 school year. They will join Cathy and Randy as Salem residents.
The waiting game
Now Elizabeth finds herself in Vanderbilt, awaiting a combined heart and liver transplant (CHLT).
“In June 2018, I was diagnosed with a severe Fontan complication called Protein Losing Enteropathy. I was also diagnosed with Fontan Associated Liver Disease, or cardiac cirrhosis. The Fontan circulation causes blood flow in the hepatic vein to become congested, therefore damaging the liver permanently,” said Elizabeth.
She was approved in March 2021 for a CHLT.
“I have been approved for a heart and liver transplant at Vanderbilt in Nashville, Tennessee. I know that I am so lucky to have seen my 40’s, but I want more time.”
Elizabeth married her husband in February of 2020, and wants the chance to grow old beside him and their shared children.
She moved into Vanderbilt Hospital – yes, literally moved in so she could be there when the call comes in for her transplant. Her mom and husband take two-week shifts staying with her.
A typical day is 5 a.m. wake-up for vitals, labs and weight, followed by doctor’s visits, Netflix binging, reading, blogging, walking the floors, field trips outside for fresh air and trying to eat.
Her two main focuses are walking and eating while there, attempting to maintain nutrition. She takes about 15-20 oral medications each day. Doctors are observing her weight for fluctuations.
“Heart patients don’t process fluid the same way as others. More than a couple of pounds in a day can lead to issues,” said Elizabeth.
A typical organ recipient is matched in a week or less at Vanderbilt. Elizabeth has been there for over 40 days.
“It’s Groundhog Day, they all run together,” she said with a slight laugh. Despite setbacks and more time with needles than anyone could enjoy, her humor and spirits remain up. Her blog uses humor to convey her message, and she hopes it resonates with other transplant patients, or those just curious about the process.
She had a match in mid-April but her antibodies attacked the donor antigens. Elizabeth did not go to medical school, but she is well-versed in medical terminology after so much time spent with doctors and her transplant team. Basically, what that means is red blood cells from the donor, were destroyed by pre-formed antibodies in Elizabeth’s circulation. It is a common occurrence after many blood transfusions.
She went through the painful process of a desensitization treatment that basically pulls her blood through a vacuum, and places it back in her body, to decrease the number of antibodies. Her numbers were still too high. . . . the transplants were cancelled.
Doctors have given thought to Donation after Circulatory Death (DCD) organs which could open the geographical region to a broader scope. The organs are kept alive until they reach the recipient. Another option is a curable organ. There has been some success in organs with defects or infection, such as the curable Hepatitis C.
Fundraising is required for the transplant.
“There are so many expenses surrounding receiving a transplant that insurance doesn’t cover; expenses that an average person wouldn’t even think about. And there are lifelong expenses that a transplant patient will carry for the rest of their life,” she shared.
Elizabeth has chosen to fundraise with Help Hope Live. Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. As of a couple of days ago, she has raised $13,890 of a $20,000 goal.
“I have a lot of motivation to help me fight and survive a double-organ transplant, I just need some financial assistance along the way. There are so many transplant-related expenses that insurance doesn’t cover; like the rent I’ll pay in Nashville and I could be there for months,” she said.
In addition to fundraising, Elizabeth writes a blog via her Facebook page, The Feisty Fontan.
Fundraising has taken place by way of the Help Hope Live page, t-shirts, mugs, and more.
Elizabeth was released for a short time from Vanderbilt on April 28. She will spend it in Florida with her family.
“I got released because there are some challenges that need to be resolved before we can move forward with transplantation. These antibodies also make me a very hard match. The average wait time for a status 3 (level on the transplant scale) with my blood type at Vanderbilt is five days. In 40 days on the list, I got one organ offer that fell through due to my mean antibodies. This is totally unheard of at Vanderbilt,” she shared.
“My doctors need some time to research and brainstorm other ways to address the complications my antibodies present. And I need a clear head and some normalcy and a chance to take care of some things before I get re-admitted for what could be a very, very, long wait.
“I’ve got a serious hug deficiency after being away from my step-kids for two months. I get to be a wife, a step-mom and a person (not a patient) for a few days. This is only a short pause in the process and I will return to Nashville ready to wait, ready to fight and ready to move forward.’
To follow Elizabeth on her journey, see https://thefeistyfontan.com or visit https://helphopelive.org/campaign/18367/. She also gives several updates per week via Facebook; search for The Feisty Fontan.