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 Gerilyn Yoder - Mother to Recipient, Kaleb
Kaleb is a 16 year old male that was born with PUV. He is a twin and they were six weeks early being born so both of my boys were put into the NICU right away. Due to the blockage Kaleb was born with only one kidney, and even that kidney was partially damaged while he was in utero. When Kaleb was nine days of age they did surgery to unclog the blocked valves. Unfortunately, he did not recover well from anesthesia and that started the very long journey which lead us to him having a kidney transplant shortly after his 16th birthday.
Because of Kaleb’s medical history he was actually looking forward to the transplant. His doctors told him he wouldn't have to be on a special diet anymore, he wouldn't feel so run down and tired all the time, his appetite would come back, and his overall health would be better. Yes, some of those things are true but I wish the doctors would have given us all the truth/ were more upfront with us regarding ALL the things that Kaleb could experience after the transplant. (Maybe this is something IROC can push for; to encourage more information to be shared with potential transplant patients).
The night before Kaleb’s transplant he was admitted to the hospital and the doctors wanted him started on an IV immunosuppressant. Unfortunately, the mycophenalate they gave him he had an allergic reaction to so the doctors did not give him anymore immunosuppression until after the transplant. For take home oral meds they put Kaleb on Imuran and Tac. Things seemed to be going okay until 3 weeks post op. Kaleb’s creatinine shot up to high 2's so they gave him IV fluids thinking he was just dehydrated. (At this point Kaleb had been getting blood draws twice a week for three weeks so his veins were shot and it was very difficult getting the IV in. It caused him A LOT of pain). After the fluids his creatinine came down so they sent us home. A week late, his creatinine was over 3 so they admitted him, started him on IV fluids, and did a kidney biopsy. The biopsy came back that he was experiencing cellular rejection so they gave him three doses of pulse IV steroids. Kaleb was in the hospital for a week, of which his creatinine did come down, so they sent us home. (Again, IVs and blood draws were next to impossible because his veins were completely shot. Even expert PICU nurses had a hard time placing an IV. Needless to say Kaleb was miserable).
A week and a half later Kaleb’s creatinine spiked back up to 3.5 so they, again, admitted him and started him on ATG. After the third day in the hospital and six IVs later the doctors came to us and told us about sub q ports (central lines). It was kind of scary thinking about my son going under anestethia again, but it was worth it to give Kaleb some relief from needle pokes and allow his veins to heal. The poor kid was black and blue up and down both arms and he looked worse than a heroine junkie. I know that is a graphic picture but ports and central lines are something that should be offered, and discussed, more in the nephrology community. Kidney patients get poked so many times (sometimes more than cancer patients) their skin and veins just cant keep up. Kaleb is now terrified of needles and is in therapy for medical related trauma. As a parent it is upsetting that Kaleb was not offered a port sooner.
Kaleb ended up receiving seven doses of ATG, iVIg and steroids before his creatinine went down and they discharged him. Upon discharge (it's now the middle of Aug and he is supposed to start school in two weeks) the doctors told him he would not be able to go to school and his "three month" recovery time would have to start over. Of course he was devastated, was tired of being in the hospital, and upset that he was not going to be able to participate in school functions. He told me and all of his doctors that he wished he never had the transplant. Of course he understands the implications if he didn't have the transplant but after being in the hospital all summer, not getting to start school on time, and being forced to be inactive/homebound for three months was a lot to deal with. The entire transplant process (pre and post op) was a lot to deal with and I just wish my family and I were better educated. Anything that can be done to help kidney patients and their families feel less stress I am in support of!
After the rejection Kaleb at home oral meds were changed and that seems to be helping. He does have small spikes in his creatinine from time to time but it is nothing the doctors have had to admit him over. We are now seven months post transplant and I hope things continue to go well for my son. He deserves some happiness for once in his life.