IROC’s mission is to partner with patients with kidney disease and their caregivers to achieve health, longevity and quality of life equivalent to the general population. IROC is committed to lowering rejection rates within this group. As part of an ongoing conversation, our community members reflect on rejection and how it impacts their family.
By Traci Krist - Mother to Transplant Recipient, Tanner
I have a hard time saying how many times Tanner has been treated for rejection. It's amazing that his kidney still functions at a healthy level. The one thing I can state with confidence is that none of the episodes of rejections are attributed to noncompliance for taking medication. In the 10 years Tanner has had his kidney, he has only missed one dose of Prograf and has been more that 3 hours late on 2 other occasions. In all instances we called our nurse coordinator and confessed our "sin." In none of these situations has it led to rejection. All instances have been attributed to other factors; but most of the time no specific reason could be given.
One instance of rejection that resonates with me occurred in August of 2012. Tanner was 3 1/2 years post transplant #2. We got a phone call from Tanner's coordinator late on a Saturday morning telling us that Tanner's nephrologist was suspicious of something he saw in the latest set of labs done earlier in the week. After consultation with the the team of nephrologists it was decided that they wanted to do a biopsy to rule out rejection. The biopsy was scheduled first thing Monday morning. Tanner needed to be at the hospital for the procedure Sunday night. Matt and I decided not to tell Tanner about the impending biopsy and the need to cancel his trip to Kidney Kamp until Saturday night after we left a graduation party that we had all been looking forward to attending. The party was for a fellow kidney transplant recipient that we met years earlier while sitting in the laboratory waiting for the pre-clinic visit blood draw. We didn't want to take any of the sparkle and shine of Adam's day away so we decided to keep Tanner's pending biopsy under wraps until we left the party. Our plan was to tell his parents, Tom and Annette, the next day, but when Tom asked how his little buddy Tanner was doing our body language gave it away and we ended spilling the bad news to Tom. He told Annette and their son, Adam, the next day.
The other factor that was hanging heavily over our head that day was the fact we had to tell Tanner he was not going to be able to attend the highly anticipated week of Kidney Kamp. In Tanner's world, this was the best week of the year. It was to be his 3rd year at Kamp with his friends Thomas and Shane. Those three boys made an immediate connection the first year they met. They kept in touch throughout the year and longed to be the kidney kids again. It broke our heart to have to tell Tanner he could not attend the Kamp. We were scheduled to leave for the 4.5 hour trip to Kamp at 10am Sunday morning. Unfortunately for us, Tanner fell asleep (increased naps and sleeping more was a sign that Tanner had rejection) on the way home from the graduation party; so we decided not to tell him until the next morning.
On Sunday, Tanner woke up early and was incredibly excited to get going to Kamp. Telling him was one of the most difficult things we ever had to do. But with all the resolve that an 11 year old can have, he looked us straight in the eye and said, "I'm going to Kamp! And you can't stop me! Neither can THEY!" Then he stormed out of the room and began packing his bag. As we watched with heartbreak, we made contact with the Kamp director and told her the situation. She felt horrible and cried with me on the phone; but totally understood the situation and wished us well. Shortly after that we received a call from Tanner's nephrologist with some last minute information and details. We relayed the events of our day to him an he asked if he could look into some things and call us back.
In the meantime, Tanner had trudged out to the car with his extremely overstuffed 3-person duffel bag and crammed it into the trunk of the car. Then he buckled himself into the car and announced he was ready to leave for Kamp. Again we reiterated that he could not go to Kamp this year. He response was simply, "I'm not getting out of this car until we pull up to the Kamp." Again we watched in horror knowing that the car was leaving, but it was going to the hospital and not the Kamp. A short time later, the nephrologist called us as promised. He said that they prefer patients to arrive the night before the biopsy; but, that it was not mandatory. Tanner's biopsy was scheduled for 10am as long as we had him at admissions before 6am so that he could be admitted and processed before shift change at 7am he could possibly spend the day/evening with his friends at Kamp. A small victory for us, but at least we had a chance of getting him out of the car. Tanner was delighted to hear this news.
We contacted the Kamp director with our alternative plans and she was delighted to accommodate Tanner any way they could. We finally arrived at Kamp nearly 2 hours late. But were greeted with children and adults cheering for Tanner. It was the most grand entrance/welcome anyone could have dreamed for. It was as if Tanner was a local hero. Before the car could be unpacked, Tanner was gone. He was consumed by all that the Kamp has to offer. After Matt and I took care of the formalities, we left to have dinner and make a plan for the remainder of the night. Shortly before “lights out” we returned to Kamp, retrieved Tanner and drove to a hotel close to the hospital for the night.
After Tanner's biopsy we were able to get him a conditional discharge from the hospital and return him to Kidney Kamp until the biopsy results were in. Never in a million years did we expect that Tanner would be allowed to leave the hospital while waiting for biopsy results. Reason One He Was Allowed To Be Discharged: The staff at Kamp is comprised of professionals that work in the kidney field: 4 nurses that specialize in dialysis or CKD pediatrics; a social worker; and two staff members from Tanner's nephrology team. Reason Two He Was Allowed To Be Discharged: Matt and I have proven over and over again that we are compliant and we will bring him back to the hospital if the biopsy results showed signs of rejection. So once again, we piled in the car with a new set of guidelines for Tanner to follow and returned him to Kamp; but at least he was allowed an opportunity to go to his beloved Kidney Kamp and just be a "regular kid."
As it turned out, Tanner did show signs of rejection so he did have to return to the hospital for treatment. On the day I picked him up all the kids and and counselors at the Kamp lined up on both sides of the street to cheer him on and wish him well. What really touched Tanner was when one of his Nephrologists showed up at Kamp to just hang out with his patients. They loved seeing him in their environment and just hanging out with him. He even spent the night with the kids enjoying the campfire stories and telling a few himself.
Tanner ended up being inpatient and he received treatments for three days. Followed by an at-home oral treatment for 5 more days. This story is not about the hospital stay, or the information we received while at the hospital, or really anything medical. This story is about a boy who was allowed to be a boy because his nephrologists went above and beyond to make sure his summer plans were not ruined. What that team of doctors did forever cemented a bond with my son. He honors and respects them. They found a way to allow him to be a boy - not a transplant recipient, not a CKD kid - just a boy. Reflecting on this time and putting this story into print has not been easy. I've giggled a little and cried a lot. In the end, this story exemplifies the most important thing we can do for our kids... and that is to let them be kids.