Charlie, Linda, and Grandma Pat drove to Los Angeles for a consultation with the doctors at UCLA. The doctors are willing to do a transplant, but are not very encouraging. They are concerned with the high number of antibodies in his blood. Before his previous transplant, he had a high number of antibodies, but they were of a rarer type. The antibodies that he has now are more common, prone to more constant attack of the donor heart and coronary arteries.
Charlie can have plasmapheresis, (similar to dialysis) to try to reduce the number of antibodies in the blood, Rituximab, to clear out B cells, and IGIV. This takes about a week in the hospital every month. After a couple of months, they test the blood to see if the antibody count is reduced enough to be safe for transplant. If it is, we would have to relocate somewhere near UCLA to be put on the transplant list and continue to do plasmapheresis to keep the count down. Due to recent changes in organ allocation procedures, waiting times have increased. Patients who used to wait a year are now waiting two. If the antibody count can’t be reduced, then transplant is not an option.
They would have to be very careful about matching the donor heart, which also poses a problem. There are fewer donor types that Charlie can be matched up with because of the antibodies. If he is transplanted, there may still have to be a mis-match of some kind. The antibodies could cause problems immediately after transplant, resulting in rejection and death, or he may possibly have to be treated with plasmapheresis every month for the rest of his life. Or, he may do well at first, but each successive heart generally lasts a shorter amount of time and he may only have a few years. The best, but rarest, possibility would be a good match. He has AB- blood type, which makes him a universal recipient, but it is not as much of an advantage as it once was. The antibodies are the main problem now. Many transplant recipients have problems catching colds, getting infections, etc. because of their immunosuppression. Charlie’s problem is that he has a very strong immune system. He rarely gets sick, but has rejection issues instead.
Our other option is to see how well he does with the heart that he has now. He may have more time left with this heart than if we take chances trying to get a new one.
We have some very difficult choices ahead of us, but feel positive that things will go well, and that the Lord loves him, has always helped him through everything and will continue to do so. Charlie doesn’t understand what’s going on, Autism being a blessing in this case. He’s not afraid. He knows that he’s safe and we’ll do our best to take care of him. We intend to fight for him and do all we can.
We appreciate all the prayers and good wishes in his behalf, the advice and suggestions. We believe that the Lord expects us to learn all we can about his condition and what can be done to help him. The main thing to understand is that we should stay away from anything that boosts the immunity. A counter-intuitive idea to what you would normally do to stay healthy.
We did have a lot of fun on our trip as well. Charlie loves hotels and had a great time at Tiverton House at UCLA and Comfort Inn in Manhattan Beach. We went to a couple of different beaches and piers. Santa Monica Pier is our favorite. We saw a seal, seagulls, dolphins and surfers. Charlie made a sand castle and found sea shells. He squealed and ran away from the waves. We went to see the dinosaurs in Cabazon. Charlie got to climb up into the head of the big Tyrannosaurus Rex. He loves dinosaurs and had a great time seeing all the different kinds. We also took a tour of the new hospital at UCLA. It was so nice, big and light. The PICU is so much nicer than the old hospital. It has private rooms where parents can sleep in with their children. The kids seemed to be having a good time in the Child-Life department. They even have a big patio area outside for them to play.
Despite the news from the doctors, we had a good trip and enjoyed spending it with Grandma Pat. Jerry and Rosie are actors in the Mesa Temple Easter Pageant this year. They stayed home for the final dress rehearsals. It’s taken a lot of time and work, but has been worth it. They’re having a wonderful time and sharing a very special message.
