My name is Diana Calhoun and my husband Barry Calhoun has Primary Ciliary Dyskinesia (PCD) which is a rare genetic disorder caused by abnormal cilia which are the microscopic hairs that move back and forth in the airways, sweeping bacteria and fluid out of the respiratory tract. In PCD the cilia do not move as they should and as a result bacteria remains in the respiratory tract and Barry continuously fights recurrent infections in the sinuses and lungs. This has resulted in scarring of his airways (bronchiectasis).
In 2008, Barry’s condition deteriorated to the point where he was in need of a lung transplant and his pulmonologist referred him to the Emory University Hospital for lung transplant. He underwent his first transplant evaluation in 2008. Despite being sick, he was still too healthy to be placed on the transplant waiting list. At that point, he became determined to do everything possible to stay healthy, both physically and mentally.
By early 2011, Barry’s his condition became more complicated and he returned for a second transplant evaluation. One month later, we received a call from the transplant coordinator letting him know that he had been placed on the transplant waiting list. Five days later, on a Wednesday night Barry received “The Call”. Barry underwent a successful transplant on May 18, 2011 and with patience, determination and adhering to his post-op treatment returned to good health. By May 2012 Barry was busy coaching our 5-year-old son Bryce’s basketball and baseball teams and attending school events. Everything was going very well.
As time wore on, Barry was starting to struggle and experience recurring infections by the second half of 2014. We knew something was wrong. In December of 2014, doctors at Emory University Hospital told Barry that he was in chronic rejection (Bronchiolitis Obliterans Syndrome (BOS)), and by February 2015, his health was in serious decline. Barry was going to need another lung transplant. He was placed on the lung transplant waiting list again in April 2015.
Barry’s health has continued to decline. So far in 2016 alone, he has been hospitalized ten times for acute and chronic respiratory failure with hypoxia. Most of the hospitalizations have required him to be placed on life support. Barry's frequent hospitalizations has resulted in him being taken off and added back to the transplant waiting list frequently. Since Barry’s health is continuing to deteriorate, one of our dearest friends, a nurse, recommended we consider University of Pittsburgh Medical Center and Duke University Hospital. These hospitals perform more repeat lung transplants and would significantly increase his chances of receiving new lungs.
Undergoing the lung transplant at either University of Pittsburgh Medical Center or Duke University Hospital will require us to temporarily relocate to either Pittsburgh, PA or Durham, NC for the surgery as well as the recovery period. We expect to be away for between 9 and 12 months and rely on family and friends to take care of our son Bryce during this time. While some of Barry’s medical bills are covered by insurance there are significant out of pocket expenses associated with relocation for such an extended period of time as well as medication costs. We humbly ask for your donations of whatever amount to help our family cope with this staggering financial impact.
Thank you so much for whatever you are able to contribute and most of all thank you very much for your prayers and support of our family during this most difficult time. Thank you for the countless times I've had to call on you to babysit Bryce and please continue to keep Barry in your thoughts and prayers.
Thank you, Diana
- Catherine Ngoh
- Vonetta & Dan Parham