All about the kids

...kidneys that is.  When you think of end stage renal disease (ESRD) and kidney failure you usually don't associate it with adolescents, but through my clinical and work experiences I have come to know a few children with this unfortunate disease.  Here are some interesting characteristics about the adolescent kidney, as they are not just "mini kidneys."

• adolescent kidney function can decrease just from stress 
• infants cannot concentrate urine so specific gravity is irrelevant
• complete bladder control is not obtained until age 4-5 (Potty training too early will just frustrate you if the body isn't physically ready for this task.)
• Most children can regenerate and regain full function in Acute Renal Failure if caught early
• Heart disease and Renal issues usually go hand in hand because the systems develop during same gestational period.

hemodialysis catheter going straight to
the heart.  Not a good idea to pull on it.

Chronic renal failure in children is usually caused by structural abnormalities or specific renal diseases.  Only when 5-10% of function remains, will the medical team initiate aggressive treatments such dialysis or transplant.  The first patient I had with ESRD was an 18 year old non-verbal autistic boy.  He was put on the transplant list, but due to the dire need for a kidney, they started testing family members for a match.   His stepfather was the best match and was going to donate his kidney after the work up was complete.  Until then he was receiving hemodialysis every other day of the week.  Imagine asking a non-verbal autistic child who doesn't understand what's going on to sit in a bed with PICC lines filtering his blood for four hours.  My job was to make sure he stayed in bed and didn't pull on the lines or anything.  Each time he was mildly sedated with Ativan, but never really fell asleep.  Because of the Ativan dose, he was admitted each time rather than simply going to an out patient clinic like most kidney patients.  That meant admit and discharge papers had to be signed and completed every other day for this family.  It was an all day process.

I watched the boy on 3-4 occasions during his hemodialysis treatments and got to know the family pretty well.  Mom had 4 kids: the patient, an older daughter in college and 10 year old twins.  I got to know the boy a little better too, which helped when trying to distract him during his treatments.  He understood simple commands like "throw this away" and "wipe your mouth" and liked to pick things up.  We would literally spend an hour with me putting five straws on the table and he'd put them in a cup, then I'd take them out and we'd do it all over again.  He liked to go on walks down the hall and wander around his room when not hooked up to the dialysis machine.  One overnight shift I couldn't get him in bed and then I had a light bulb go off.  I tossed a couple of his straws in the bed and voila he went to the bed to pick them up.  Worked like a charm.

So many people ask if it's sad to see all these sick kids every day and to be honest, I feel the parents and families feel the effects of a child's illness more than the child themselves.  One of the days the mom asked if they could change one of the dialysis dates because she had an event to attend for her daughter who had been neglected during this whole process.  Doctors tried to be as flexible as possible, but there was no way they could skip.  Mom just needed to figure out how to be in two places at once.  Another time, everything was done and mom was just waiting for discharge papers.  Why they were taking so long was beyond me, but after two hours of waiting she just left.  I tried to stall her and see what the deal was, but bottom line she needed to pick the twins up from school.  To be honest I kinda agreed with her decision.  They are in the hospital every other day, there is no reason why there should be any delay in the discharge process.  To top it off, while I was trying to stall her in the hall and sign all the papers she could, I didn't realize the resident was sitting right there in the office.  Only after they left did she come out and ask where they went and why.

With kidney transplants, they usually
don't remove the failing kidney.
They just add the new one. 

Another patient I had was during clinical at U of C.  He was a 16 year old boy who appeared much younger than stated age.  Decreased renal functioning and the anti-rejection medications can drastically stunt growth and development.  He had a kidney transplant from a living donor, his third grade teacher, a few years back.  When I took care of him he had just had his second transplant, this time kidney and liver from a nonliving donor.  He was readmitted because his electrolyte levels weren't being controlled by PO meds.  A couple weeks later he was still there with suspected rejection from the recent transplant.  He took his illness in stride and had enough pills to take each day to fill up a fun size bag of M&M's.  There are 4,600 children on the donor transplant list in Illinois with 2/3 waiting for a kidney.  The average length to wait is 4-6 years.  Children get priority on non-living donors under a certain age.  Don't remember the number, it's either mid-twenties or early thirties.

My clinical instructor was a PA who works very closely with transplant patients.  When we had orientation at U of C, she mentioned a lot about international patients coming in for transplants.  I inquired about how international patients work into the national transplant donation list and was a bit stunned at what I found out.  The government of some countries that do not do transplants will pay for families to come to America for the procedure.  When the family comes over for the work up, they just hop onto the donor list wherever they fall.  The sicker you are the higher up on the list you go.  That means someone can fly over from any country and hop ahead of hundreds of kids who have been waiting on the list if sick enough.  Don't know if I necessarily agree with this system, but money talks in a capitalist society and if the country is going to flip the bill, why can't the kid get on the list.  It is also a huge commitment on the families part as well.  As long as the family is on the list they need to stay in the US.  Sometimes families are split for years waiting for an organ and there is no guarantee that they'll even get one before time runs out.

Moral of this post... register to be a organ donor if not already.  It's as simple as a clicking here and registering with your state.  It's not just donating an organ, it's donating a life.