Getting to know levine pediatric dialysis unit
kidSney sat down with Lynn Puma in December, clinical social worker for the pediatric dialysis unit and transplant center, at Levine Children’s Hospital of Charlotte. She had some enlightening information and shared her concerns and ways that our organization could benefit them in the future. Lynn sees about 8 to 10 children a day, there are about 25 children currently on dialysis at LCH and a considerable amount of those are babies. There are 16 children waiting on a kidney transplant and since our meeting we heard there was a huge blessing answered, and two of the children have received a kidney!! Lynn explained that this is very rare, and quite amazing! The wait for a child’s first kidney is typically 6 months to a year, and for a second kidney is much longer some have been waiting over 4 years. Since a kidney life after a transplant is around 10 to 15 years, children will need another kidney transplant in their lifetime sometimes several. Some children need a transplant sooner, due to not taking anti rejection medications properly or proper diet, on the other hand some can go longer. Transplant is preferred over dialysis for children, as children on dialysis do not grow as well. kidSney wanted to know ways to help children sitting in dialysis for 15 hours a week or waiting for a kidney to help pass their time and give them better quality of life. We found that at Levine most of the other pediatrics units, such as cardiac or cancer, get lots of attention and support from the families as well as outside organizations. The pediatric kidney unit would be delighted for us to help out and give them some support! kidSney has organized a night to visit some of the dialysis kids and deliver games, crafts, and meet with each child individually to learn from them. We are beginning to organize a summer picnic to bring the families together for support and laughter! We learned of the extreme and tiring commitment it puts on the entire family of the dialysis patient, and we think getting the families together in fun activities will get them talking and help them know they are not alone in the everyday struggles. kidSney has created wish lists for each child, if they had an extra $5, $20, $50, and so on that will soon be posted on or website. We look forward to working with these special children and their families. kidSney will keep everyone updated on the things we are doing for Levine and ways you can be a part! Thanks to Lynn Puma, she showed such compassion and love for these children, they are lucky to have her as well! She is such an inspiration!!!
Evan and Eli Haines' inspirational story
At home they're often - half teasingly - called "the E bros". Evan and Eli are five years apart at 15 and 10 years old, but they are often thought of as something closer to twins among the four Haines boys. Evan is a Star Wars fanatic and Eli is a sponge Bob enthusiast, but together they spend most of their time playing LEGO's. Recently, though, they have started spending several days a week together in the pediatric dialysis unit at Levine Children's hospital.
The E-bros share a bedroom at home, and joke about whose dry weight - a critical metric for kidney patients - went up the most when they go for their blood treatment three times a week. Both boys seem relatively healthy and active, and signs of danger were mostly subjective. In July when Evan went on a boy scout high adventure camping trip, one of the adult leaders saw ample signs for concern. The leader is a doctor and family friend from church. He advised Evan's parents after the trip to have Evan checked by a specialist. After years of inconclusive responses from doctors, this specialist was able to see what others had not.
Evan's parents got a call the next morning. Evan was in end-stage kidney failure and there was a room waiting for him at Children's. The shock settled in and the family was adjusting to their "new normal" after almost two months of dialysis and planning for a kidney transplant That's when Evan's parents, Bryant and Laura, were finally able to get Evan's three brothers tested for similar issues. Mom and Dad had a feeling about the youngest; the symptoms, however subtle, were too similar. Predictably, the doctor called the next morning to confirm. Eli was also in trouble and needed immediately treatment and a transplant.
Eli's admittance to the hospital just one room down from where Evan had stayed gave Evan a chance to be the veteran advisor, support partner, and in-room LEGO supplier. Now that both boys are home and receiving outpatient dialysis while preparing for kidney transplant, the Haines family is adjusting again to their "new normal."
One part of the new normal for the family is preparing for the costs of two family members undergoing major surgery (four members if mom and dad turn out to be donor matches). Bryan Haines (dad) works for a bank and has good insurance. The boys also qualify for Medicare despite their ages due to the chronic nature of their condition. Even with these safety nets, the out of pocket costs are already starting to pile up will be significant over time. With a lifetime of immuno-suppression medications and another kidney transplant every five to fifteen years, the road will be long.
The E-bros share a bedroom at home, and joke about whose dry weight - a critical metric for kidney patients - went up the most when they go for their blood treatment three times a week. Both boys seem relatively healthy and active, and signs of danger were mostly subjective. In July when Evan went on a boy scout high adventure camping trip, one of the adult leaders saw ample signs for concern. The leader is a doctor and family friend from church. He advised Evan's parents after the trip to have Evan checked by a specialist. After years of inconclusive responses from doctors, this specialist was able to see what others had not.
Evan's parents got a call the next morning. Evan was in end-stage kidney failure and there was a room waiting for him at Children's. The shock settled in and the family was adjusting to their "new normal" after almost two months of dialysis and planning for a kidney transplant That's when Evan's parents, Bryant and Laura, were finally able to get Evan's three brothers tested for similar issues. Mom and Dad had a feeling about the youngest; the symptoms, however subtle, were too similar. Predictably, the doctor called the next morning to confirm. Eli was also in trouble and needed immediately treatment and a transplant.
Eli's admittance to the hospital just one room down from where Evan had stayed gave Evan a chance to be the veteran advisor, support partner, and in-room LEGO supplier. Now that both boys are home and receiving outpatient dialysis while preparing for kidney transplant, the Haines family is adjusting again to their "new normal."
One part of the new normal for the family is preparing for the costs of two family members undergoing major surgery (four members if mom and dad turn out to be donor matches). Bryan Haines (dad) works for a bank and has good insurance. The boys also qualify for Medicare despite their ages due to the chronic nature of their condition. Even with these safety nets, the out of pocket costs are already starting to pile up will be significant over time. With a lifetime of immuno-suppression medications and another kidney transplant every five to fifteen years, the road will be long.
