The wait for transplant was a very difficult and emotional phase of our experience. It began in August of 1994 with one of our regular Pulmonary Clinic recheck appointments. This was when we learned that the transplant could wait no longer. Josh was running out of time and time was not on our side when it came to waiting for a donor. The wait for lungs, we were told, could be up to two years.
It was obvious he didn’t have that long. The pulmonologist spoke to him; there was no longer time to mince words. We discussed, Josh was shocked and withdrew; we went home with no decision made.
Scheduled for another appointment a month later, I shifted into 3rd gear. We talked to a psychologist, we talked to a transplant recipient, we talked to each other. He truly did not have any idea what was in store, nor did I. We soon had an appointment with the UPMC lung transplant surgeon who would be performing the procedure. He basically told us how this would be performed, using what he called the “clamshell” technique. “The clamshell incision is shaped like a curved ‘W”, and is typically performed in the anatomic skin/rib groove below the breasts.” https://thoracics.org/2012/03/13/the-clamshell-incision/.
Josh would be put on a heart-lung by-pass machine to keep his blood oxygenated while his lungs were removed and his donors’ lungs were connected inside his chest. The thoughts of this description dominated my crazy brain for the many hours while Josh was in surgery.
So, in November, right before his 13th birthday, Josh was admitted to Pittsburgh for a transplant evaluation which in those days required a three- or four-day hospital admission. He was kept busy between Nuclear Medicine, CTs, chest x-rays, Pulmonary Function Tests and innumerable other procedures.
A Psychologist interviewed Josh’s dad and me privately, and then Josh alone, afterward. When I asked Josh how it went, he seemed somewhat insulted as he said, “She asked me if I knew where I was!” He had pointed to a prominent sign on the wall of his room, and replied to her, “It says Pittsburgh Children’s Hospital right there!” He passed. With flying colors, I would bet.
And so, the wait began. I think I overwhelmed the guy upstairs with all the prayers. Dear God, let a donor come soon. You don’t want anyone to die, but the inevitable always happens. The trick was to have a family willing to allow organs of their loved one to live on in a grateful recipient. Month after month passed, with monthly Pulmonology Clinic appointments, worried looks on the Pulmonologists’ faces.
Finally!! A mid-April afternoon brought a call from our Transplant Coordinator that a donor was available. Josh’s issue was that he was 13 years old, but his lung disease had prevented him from thriving, growing. He was very small for his age. His donor wouldn’t be determined according to age, but rather by thorax (chest) size. We arrived in Pittsburgh, were taken to the OR floor, testing was completed, an IV inserted and then…in testing the donor’s lungs, it was found that the donor has aspirated (breathed in) vomit. The lungs were not viable. I can’t describe the disappointment we all felt. Would another donor come in time? We drove the 3-hour ride home, quiet, thinking of all the possibilities. Another month passed by, and another, Josh hanging on by a thread.
In July we received our second call. We were so very grateful, yet knowing that another family was grieving for the loss of their precious child intruded into my thoughts. Please, God, let this one be good! All the waiting and preparation for this day culminated in this very moment when we were told: “it was a go!”. Thank you, thank you, thank you, God!!!