It's a medical mystery. The causes of giant cell myocarditis are unknown.

The rare disorder inflames and destroys the heart muscle and other cells.

The inflamed cells fuse together... Forming abnormal masses called macrophages.

Individuals who suffer from this disorder may develop abnormal heartbeats, chest pain and, eventually, heart failure.

Many people eventually need a heart transplant to survive.

Brenda Kapp exercised regularly, ate well, and hardly ever got sick.

“I had started just short of breath and wheezing,” Kapp explains.

She went to the doctor thinking it was asthma, not her heart, and certainly not giant cell myocarditis, a heart disease so rare doctors only see three to four cases a year. Several opinions later led Brenda to the Cleveland Clinic’s ICU.

“We were starting to see its effect on her kidneys, on her liver. Everything was just not getting good blood flow,” says Maria Mountis, a cardiologist at Cleveland Clinic.

They waited for six days until her balloon pump started to fail.

“I said to God you know what? This is my last day,” Brenda said.

Right on cue, Brenda’s prayer came true. She got her gift of life with a new heart.

“I just feel like I have this wonderful, wonderful blessing in life in front of me now,” says Brenda, “Until you’re on the other side you don’t realize how important it is."

Further testing of her old heart confirmed it was giant cell myocarditis. Doctors usually cannot diagnose it until after surgery because they need a piece of the patient's heart tissue for the test, which was why Brenda received so many different opinions. Symptoms for giant cell may also include swelling of the ankles, chest pain, heart palpitations, and fatigue. Eventually, the only option is a heart transplant.

After full recovery, with help from the organization Lifebanc, Brenda met the family who donated her new heart.

She says it has opened her eyes to organ donation.

Every ten minutes, a new name is added to the national organ waiting list.

On average 22 people die each day because there aren’t enough organs.

Just one organ donor can save up to eight lives.

Research Summary

TOPIC: A NEW HEART FOR HEALTHY BRENDA

REPORT: MB #4256

BACKGROUND: Giant cell myocarditis is a rare cardiovascular disorder that occurs for unknown reasons (idiopathic). It is characterized by inflammation of the heart muscle, a condition referred to as myocarditis. Inflammation is caused by widespread infiltration of giant cells associated with other inflammatory cells and heart muscle cell destruction. Giant cells are abnormal masses produced by the fusion of inflammatory cells called macrophages. Individuals with giant cell myocarditis may develop abnormal heartbeats, chest pain and, eventually, heart failure. Many individuals eventually require a heart transplant. The disorder most often occurs in young adults. (Source: http://www.webmd.com/heart-disease/giant-cell-myocarditis)

TREATMENT: During a heart transplant, the diseased heart is removed and replaced with the donated heart. During the surgery, a mechanical pump moves blood through the body. Brenda Kapp had giant cell myocarditis (GCM) and was fortunate to receive a heart through Lifebanc, a federally designated, non-profit organ procurement organization for Northeastern Ohio. The heart was from a woman with Cerebral Palsy whose family decided to donate the heart after she was rendered brain dead. Brenda and the family of the woman became good friends after the transplant. Brenda has had to adjust to the doctor’s restrictions. They suggest that she stay in the country. She needs to be careful around dirt, molds, and mildews. She is supposed to stay out of any bodies of water such as oceans, lakes, rivers, and ponds. Once flu season arrives, she needs to be concerned about being in the public. If she is in an airplane, she is required to wear a mask to protect herself from germs. Unfortunately, GMC can occur in the new heart so she must be careful and take immunosuppressing medications.

(Source: http://www.exploreclarion.com/2016/09/18/local-woman-celebrates-second-anniversary-of-heart-transplant-meets-donors-family/)

NEW TECHNOLOGY: In the late 1980s and 1990s, the average time from the start of symptoms to death or transplantation was only five months in GCM. Historically, many patients died before their name could be placed on a transplant list. Lack of availability of information in the medical community about this rare disease presents the greatest challenge. For the best outcome, an accurate, early diagnosis may allow for treatment and long term survival. Post-transplantation survival is approximately 71% at five years.

(Source: https://www.myocarditisfoundation.org/about-giant-cell-myocarditis/)