Just one week after her son Isaiah was born in 2008, what should have been one of the best times in her life turned a lot more complex when Danecia “Necia” Williams was diagnosed with Peripartum Cardiomyopathya, or PPCM. PPCM is a type of heart failure where the heart becomes enlarged and weakened. It arises within the last month of pregnancy to five month after childbirth.

While up to 70% of women with PPCM recover fully with normal or near-normal heart function, as many as 10-15% have persistent heart failure. That’s the case with Necia. When she was diagnosed, her heart was functioning at 20-25% of capacity. In the seven years since, despite doing the things her doctors recommended, things haven’t gotten better.

She’s lost weight – at her highest she was 260 and she’s down to 190 – she changed her diet and exercised within her limitations. However, within the first year she had to have a defibrillator installed to monitor her heart rhythm. 

“I did pretty good with it for the first six years, but on Dec. 26, I had a stroke,” noted Necia. “The stroke was due to the weakening of my heart.” 

Thanks to fast attention from her family and doctors, she doesn’t have any lingering effects from the stroke, but her doctors agreed, her heart function has deteriorated to a point that the only option for her is a heart transplant.

“What surprises people most is they think that heart disease is an old people’s disease,” said Necia. 

She proves that isn’t the case. But she encourages women to take care of themselves and to lose weight. Obesity is a risk factor for PPCM and it’s also a risk factor of all heart disease. 

“If you have a weak heart that extra weight is detrimental to it (your heart). I wasn’t a heavy girl, walking 5ks and exercising, but it still happened to me,” said Necia who has a history of hear disease in her family. Her father and two aunts both have heart disease. 

Transplants are lifesaving but financially draining. Even with insurance Danecia is faced with very high out-of-pocket expenses including travel to and from Integris Hospital in Oklahoma City pre and post-transplant, relocation for several months post-transplant to be closer to the hospital, caregiver expenses, and life-long post-transplant medications of up to 1,200 a month, co-pays, lab fees and more. 

To help with the financial burden of Danecia’s uninsured expenses, a fundraising campaign in her honor has been established with HelpHOPELive, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax-deductible, are held by HelpHOPELive in the Midwest/West Heart Transplant Fund, and are administered by HelpHOPELive for transplant related expenses only. Please consider a contribution. 

To donate, go online to https://helphopelive.org/campaign/10745.

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