It’s been almost 4 months since Luke had his transplant and he has had some ups and downs. The hardest part of his recovery has been that he completely has no interest in food. This is not something we expected to happen, so it has been a bit disappointing. He does have a meal replacement formula he has been on, but we are working on getting him therapy with the hope he can find an interest in eating again.

 

Luke’s donor had CMV (Cytomegalovirus). This is a virus that affects people of all ages, over half of adults by the age of 40. Most people show no signs or symptoms and like some some viruses just becomes dormant and no problems arise. However, when Luke received his new liver, the CMV virus his donor had was reactivated. Luke has to take an antiviral medication while the virus is active and once he has 2 negative blood test where the virus is no longer present, he can go off the medication. It seems to keep coming back a few weeks later once his medication is stopped.

 

While CMV causes no problems for normal people, in the immune compromised it can have devastating affects.

 

Luke has weekly lab drawn at Dallas Children’s Hospital and the results are sent to his team in Pittsburgh. They then recommend medication changes as needed.

Fortunately, Luke’s liver enzymes have been great but at his last draw, his white blood cells were dangerously low. His parents were told to keep him out of any public places until they can get that up. They are in the process of Luke receiving shots to help raise that count.

All in all, Luke is happy and doing very well. He loves his cars, planes and trains and he loves being outside.

Please keep Luke and his family in your prayers. Luke still has a ways to go but we are so thankful for how far he has come.