Rejection: A mother's perspective {Series}

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 Deb Sternhagen - Mother to Transplant Recipient, Chase

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My son, Chase, was diagnosed with FSGS in March of 2009. On October 24, 2013 he was transplanted with one of my kidneys.

His first bout of rejection concerns came on November 5, 2013 due to increase in his creatinine. A biopsy was done and found that he had mild acute cellular rejection. He received 3 doses of solumedrol. His creatinine came back down and he was discharged on November 11th. I was confused, unsure and completely devastated over the thought of possible rejection.

On January 9, 2014 he was once again admitted to the hospital due to increased creatinine. Chase was treated with IVF during this time and was discharged with stabilized creatinine.

In March of 2014 he was once again hospitalized due to increased creatinine where a biopsy showed acute vascular rejection. This time they opted to try thymoglobulin to help treat the rejection. Chase tolerated this well and his creatinine once again returned to baseline.

Within 5 months of transplant he had already experienced cellular and vascular rejection, with no real known reason. I was at a loss for what we could do.

His creatinine remained fairly stable for several months due to the thymoglobulin, so we actually had a pretty good run of luck. No biopsies, no hospitalizations, no additional rejection concerns.

Unfortunately two years later he once again was biopsied due to increase in his creatinine, where it confirmed chronic antibody mediated rejection (AMR). He was treated with IVIG this time and due to the IVIG developed aseptic meningitis. His body could not handle the rate the the IVIG was given, so it was determined from that point that any further IVIG would be given at the slowest rate possible to avoid this situation again. After 4 days in the hospital he was sent home with baseline creatinine, and knowing that we would be battling the AMR moving forward. He continued with monthly IVIG treatments in April and May.

In August of 2016 he was again biopsied to see if the IVIG treatments were successful in reducing or eliminating the antibodies, but they weren’t. He was treated this time with a dose of Rituximab, which he did not tolerate well. During the infusion, Chase began to have altered mental status, tachycardia, elevated blood pressure and nausea, which he was unable to recall the following day. This was the scariest day of my life and one I hope to never have to see again.

He followed up the next couple of months again with IVIG treatments, which helped keep his creatinine stable, but unfortunately it didn’t help with the AMR.

That brings us to today, where we know that he will never be without the antibodies his body has created against his kidney, but instead we will try to keep them from developing any further. His creatinine has been on the rise again lately, so I feel another biopsy coming on to check the status of the rejection. All we can do is pray that things don’t get worse and that he can manage to keep this kidney for several more years. I feel fortunate to have it last for the 5 years it has, given the issues that he’s had, but would love to see another 10 years out of it.