Our Story

Langdon’s journey begins very shortly after he was born. He had an ultrasound after he was born, and we were immediately told of his suspected diagnosis of ARPKD (Auto Recessive Polycystic Kidney Disease). His kidneys were both 3 times the normal size and full of cysts, and his liver was also enlarged and had cysts in one quadrant. He spent 24 hours in the NICU for observation because of elevated blood pressure. His blood pressure improved and he was able to come home, with very strict instructions that we see the pediatric nephrologist within one week.

When we saw nephrology, Langdon had imaging done as well as lab work and eventually genetic testing which confirmed he did in fact have ARPKD. He has been on multiple medications since he was a week old; as his kidney and liver disease progresses, we have to add more medications. Langdon has been hospitalized more times than we can count, and we have gone through periods of where we were in the hospital more than we were home. He has a large team of specialists that include nephrology, GI, hepatology, hematology, and immunology. He misses a lot of school because of all of his appointments. Langdon’s liver disease has progressed to the point where he now has ascites in his belly, and his portal hypertension is severe. This has caused his blood to back up into his spleen, which is significantly enlarged. He also has to have scopes monthly to band varices in his esophagus. His most recent banding caused a complication that had him in the hospital for 5 days.

Langdon is now at the point in his journey where he is being listed for both a kidney and a liver transplant, and we have begun living donor testing as well. We do not know yet whether his transplants will happen at the same time, close together, or at different times completely. Our transplant center is 2 hours away from home, and we will be required to stay locally by his center directly after transplant for an unspecified amount of time.

Through everything, Langdon has stayed optimistic, and he’s looking forward to transplant. His hope is to live a more normal life, spending less time at doctors’ appointments and in the hospital.

We want to thank everyone for following along with Langdon’s journey.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.