A Whole Heart for Brian Dougherty
Donation protected
Brian was born with a severe congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS) in March 2000. He underwent three open-heart surgeries, resulting in his current Fontan circulation, all before he turned 2. A fourth open-heart procedure was necessary in 2003 to help treat a condition that developed, Protein Losing Enteropathy (PLE). The PLE went into remission for a number of years but returned with a vengeance in 2010 and still remains out of control today.
Brian's heart defect and resulting PLE has caused severe malnutrition, stunted growth, cataracts and osteoporosis. His pediatric cardiologist at Hershey Medical Center had no available treatment options remaining, so Brian was referred to Children's Hospital of Pittsburgh, UPMC, for a heart transplant evaluation. Children's UPMC is the facility recommended by our current medical insurance.
Brian completed his transplant evaluation in late 2014. He had three cardiac catheterizations completed in 2015 to place stents in his Fontan baffle. The hope was that they would improve his PLE and place him in a better physical state for when he receives his new heart. So far, the stents have not worked and Brian was listed as a 1B on the transplant list.
We made a trip to Pittsburgh in June so that Brian could visit the UPMC heart camp, knowing that his transplant doc would be there to keep a close eye on him. She quickly noticed that Brian was not tolerating activity and was retaining a tremendous amount of fluid. She suggested he be admitted to Children's UPMC for heart failure support. Brian had a Broviac port placed and was started on Milrinone therapy (a continuous IV medication for heart failure) on June 22nd. He responded well and was discharged a few days later requiring less oxygen and enjoying greater activity tolerance. His status was also increased to 1A on the transplant list (reality is setting in quick).
Our goal was to make sure he remained stable for a week and return home across the state, but that didn't happen. On July 2nd, Brian suffered a major stroke that paralyzed the left side of his body. Thanks to the quick action of his transplant team, they contacted a neurosurgeon from UPMC Presbyterian, who rushed to UPMC Children's and successfully removed a 3cm clot from Brian's brain. In typical Brian fashion, and much to everyone's amazement, he regained nearly full function of the left side of his body. Unfortunately, in the days following the surgery, Brian also suffered a number of tiny strokes in his cerebellum (brain stem). His eye muscle function and vision were impacted, but both have since returned to near normal.
Initially, we were going to use the funds raisied for transportation across the state via air ambulance. Because of Brian's change in health status, we are now staying in Pittsburgh until Brian receives his new heart. Funds raised will be used to offset the cost of housing (both prior to and at least 6 months following his transplant), meals, medication and medical co-pays, transportation costs in Pittsburgh (and when we are able to travel home), and other ongoing transplant related costs we expect to incur.
I sincerely thank each person, from the bottom of my heart, that has donated to Brian's campaign. Words cannot express my appreciation for your kindness and generosity during our time of need.
Thank you for taking the time to read about my son's medical condition. Please keep him in your prayers.
Brian's heart defect and resulting PLE has caused severe malnutrition, stunted growth, cataracts and osteoporosis. His pediatric cardiologist at Hershey Medical Center had no available treatment options remaining, so Brian was referred to Children's Hospital of Pittsburgh, UPMC, for a heart transplant evaluation. Children's UPMC is the facility recommended by our current medical insurance.
Brian completed his transplant evaluation in late 2014. He had three cardiac catheterizations completed in 2015 to place stents in his Fontan baffle. The hope was that they would improve his PLE and place him in a better physical state for when he receives his new heart. So far, the stents have not worked and Brian was listed as a 1B on the transplant list.
We made a trip to Pittsburgh in June so that Brian could visit the UPMC heart camp, knowing that his transplant doc would be there to keep a close eye on him. She quickly noticed that Brian was not tolerating activity and was retaining a tremendous amount of fluid. She suggested he be admitted to Children's UPMC for heart failure support. Brian had a Broviac port placed and was started on Milrinone therapy (a continuous IV medication for heart failure) on June 22nd. He responded well and was discharged a few days later requiring less oxygen and enjoying greater activity tolerance. His status was also increased to 1A on the transplant list (reality is setting in quick).
Our goal was to make sure he remained stable for a week and return home across the state, but that didn't happen. On July 2nd, Brian suffered a major stroke that paralyzed the left side of his body. Thanks to the quick action of his transplant team, they contacted a neurosurgeon from UPMC Presbyterian, who rushed to UPMC Children's and successfully removed a 3cm clot from Brian's brain. In typical Brian fashion, and much to everyone's amazement, he regained nearly full function of the left side of his body. Unfortunately, in the days following the surgery, Brian also suffered a number of tiny strokes in his cerebellum (brain stem). His eye muscle function and vision were impacted, but both have since returned to near normal.
Initially, we were going to use the funds raisied for transportation across the state via air ambulance. Because of Brian's change in health status, we are now staying in Pittsburgh until Brian receives his new heart. Funds raised will be used to offset the cost of housing (both prior to and at least 6 months following his transplant), meals, medication and medical co-pays, transportation costs in Pittsburgh (and when we are able to travel home), and other ongoing transplant related costs we expect to incur.
I sincerely thank each person, from the bottom of my heart, that has donated to Brian's campaign. Words cannot express my appreciation for your kindness and generosity during our time of need.
Thank you for taking the time to read about my son's medical condition. Please keep him in your prayers.
Organizer
Brian Michael
Organizer
Nanticoke, PA