Visceral Myopathy Patient Receives Digestive System Transplant

 

Macey Brietenback, a resident of Bel Air, Maryland, is nineteen years old and has endured various operating procedures over 70 times.

WJZ has been following Macey’s struggle with her visceral myopathy disorder for the past four years.

Macey has an extremely rare, painful, and debilitating disease that affects the smooth muscle that lines her organs. The disease was discovered during her mother’s pregnancy. Macey has three siblings who are free of the disease.

By the time she was seventeen, a major portion of her stomach had been removed and she was receiving nourishment through a central line in her heart. Her doctors did not recommend further exploratory surgeries after nine attempts to restore the function of her small bowel which had shut down.

Although she spends most of her days bedridden and in pain, on the occasional day when she is mostly pain-free she spends this precious time at “normal” activities.

About the 2018 USA Pageant

With all her problems, Macey, a beautiful and intelligent young lady, manages a smile and charms people with her courage and positive attitude.

Then in 2018 one of her dreams came true. She had always imagined herself in a beauty pageant and she was chosen as a finalist in the 2018 Teen USA pageant.

Somehow, with the support of family and friends, Macey managed to participate in the USA pageant.

It Took a Village

Getting Macey to the pageant took the involvement of family, local merchants, and friends. A website was set up www.prayformacey.com to share Macey’s story and news about the pageant.

The Transplant Decision

Macey’s doctors advised her parents that the disease was progressing. She was also in a great deal of pain. Macey and her family had to decide whether she should undergo the only option left which was a transplant of a liver, pancreas, stomach, and intestine.

The decision to go forward with a transplant of a full digestive system was very difficult but Macey opted to be put on the waiting list. Data indicates survival of only five years.

Macey’s Future

WJZ spoke with Macey’s mother in an emotional interview after the operation. Her mother tearfully explained how difficult it has been to continually face the possibility of Macey’s death.

A Facebook posting by the family reported that so far Macey is doing very well and they are very grateful for the prayers and support they have received.

WJZ added that anyone can join a Facebook page called “Pray for Macey.”

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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