Well hello there 2020.
Zoe has added nephrology to her list of specialists. She’s got a doctor for her heart, one for her lungs, one for her digestive system, one for those pesky swim/dance related injuries and NOW, one for her kidneys.
It’s well known amongst the transplant community that Tacrolimus, an anti-rejection medication, is murder for the kidneys. Long-term use of the drug (short term doesn’t exist btw) means eventual destruction of the kidneys. Unfortunately, the other anti-rejection drugs available don’t hold a candle to Tacro and thus…chronic kidney disease is par for the course in transplant patients.
At every biopsy, Zoe’s creatinine levels are checked with all the other labs that are run. Creatinine is a waste product. The amount of creatinine in the blood indicates how well the kidneys are functioning. The higher the level, the lower the kidney function. Zoe’s levels have been holding pretty steady at 1.0 for a couple of years. At her biopsy in July, her level was 1.0.
Last fall, Zoe was complaining about severe exhaustion so off to the pediatrician we went. I wanted her checked for a medical reason for the fatigue before I told her to get off her butt and go to the gym instead of napping until dinner every day after school. It’s really easy to get yourself caught in a viscous fatigue cycle; you have no energy so you sleep a lot, no activity leads to further fatigue, and on and on the cycle goes. Her pediatrician ordered labs and gave her a pretty thorough physical exam. Neither her lab results, nor the physical gave any reason for the fatigue so the doctor echoed my “Stop napping and go do something, like the gym” sentiment. She noticed that Zoe’s creatinine level had jumped to 1.3 since July. While this isn’t a reason for the fatigue, it’s not good so she sent a message to cardiology and copied nephrology. Nephrology contacted me and scheduled Zoe for January. Cardiology decreased her Tacro level slightly.
Last week we met with nephrology. It was an educating visit for both Zoe and myself. We learned that there are 5 stages to Chronic Kidney Disease which Zoe falls into because of her Tacro. Again, this was all expected. Stage 1 CKD is 80-90% kidney function. Stage 5 is 30% function or less. Kidney transplants don’t occur with the regularity of other organs thanks to dialysis. There are 2 types of dialysis; hemodialysis and fluid dialysis. Hemodialysis is when the blood is removed from the body, cleaned via machine and then returned. It’s done at a facility and generally is done 3 days a week. Fluid dialysis can be done at home. The patient is still hooked to a machine, but the fluid from the body is cleaned instead of the blood. It’s done overnight, while the patient sleeps so it’s much less disruptive to life. With a creatinine level of 1.0, Zoe would be considered stage 2 with approximately 70% kidney function. With a creatinine level of 1.3 (October value) she’s looking more like stage 3 with 50% function. Stable levels give greater indication of which stage she’s at since the creatinine levels can fluctuate with too high Tacro levels and dehydration.
Zoe got a(nother) lecture on how much she doesn’t drink. My kid operates on a high level of dehydration on a daily basis. Despite my urging to drink drink drink, she doesn’t doesn’t doesn’t. What’s a mom to do? Apparently, threaten dialysis. Who knew? Tacro causes damage to the kidneys. Dehydration causes damage to the kidneys. Zoe not drinking is basically taking a bad situation and making it much worse. She’s been instructed to drink no less than 64 ounces of water every single day. No exceptions. No excuses.
Nephrology repeated her labs and I received a call the following day that they came down from 1.3, but at 1.1 it’s not the 1.0 (Zoe’s current normal) that all the doctors want it to be. I was reminded to push fluids since that’s the only part of this we can control.
The current plan is to repeat her labs in a month, and will they will be repeated when she sees nephrology every 3 months for the next year. Tacro levels will also be run and monitored to see if the dosage can be safely lowered at all to keep her levels where cardiology wants it while giving her kidneys a break.
The damage done to her kidneys is not reversible. They won’t get better. The goal now, is to keep them from getting too much worse too soon.
January 8, 2020 at 9:21 pm
Chrissy, thank you so much for all the info. Hopefully Zoe will realize the importance of drinking water, who would have thought after seeing her beg for it before the transplant.