I have spent 20 years as a pediatric dialysis nurse. I take care of children with kidney failure. I’m sure most of you have vague ideas that dialysis is for elderly people with diabetes or high blood pressure. Strangely enough, almost none of our children have these conditions. It generally takes at least 20 years of severely high blood pressure or uncontrolled diabetes to require dialysis.
I see children from the age of 26 weeks (the youngest I have worked with) to 21 years. Children have kidney failure for very rare reasons. The general categories are genetic (unheard of stuff like Autosomal Recessive Polycystic Kidney Disease); congenital (conditions in the kidney or bladder that either obstruct urine, causing severe damage, or were absent or malformed in utero); complications from another diseases like Lupus; severe infections like sepsis or E coli; and a multitude of other diseases that develop inside the kidney. All of these are rare, and some are very difficult to manage.
Imagine being a child with an organ that no longer functions. Imagine needing a dialysis treatment either every night or 3-5 times a week to stay alive. Imagine not being able to eat your favorite food because it has too much potassium, salt or phosphorous in it. Imagine having to take up to 30 medications a day. Imagine having chronic anemia and bone disease and growth failure. Imagine not being able to pee like your friends. Imagine having to live with a line in your body until you can get a transplant. Imagine almost always looking plump and puffy from too much fluid buildup. Imagine feeling crappy and tired all the time. Imagine knowing that your chance of death by age 30 is 1000 times the normal population.
Imagine being a child and having to endure all of this.
Imagine being a parent and having to force your child to take all these meds. Imagine learning to perform medical treatments, dressings and injections nightly at home or coordinating your day to take your child out of school several times a week for dialysis at our center. Imagine the daily fight to limit their fluid and change their diet to one that is very difficult for anyone to follow. Imagine watching them endure surgeries and complications; never knowing what will happen next. Imagine having to pay up to 150000 dollars a year for basic dialysis care. Imagine keeping a job while constantly taking off from work for medical problems. Imagine keeping your life, your family and your marriage healthy.
Dialysis saves lives but at great costs to children and families.
I love these kids. They inspire me every day. Despite their condition, they are kids and have all the regular needs that kids have, go through the regular stages of childhood and need love and discipline the same as every other child without chronic illness.
I work with amazing doctors who are known internationally for their expertise in Pediatric Nephrology. Almost all of our kids survive until we transition them to adult centers. But I die a little every time I see a notice or an email that one of them has died. We are not given any information about what happened to people who we may have cared for since birth. The consequences of kidney failure slowly kill the heart, and most die of stroke or heart failure or heart attack.
I go to the ICU as well, caring for very sick kids with kidney failure. I often feel like the angel of death. Kidney failure from severe illness has a 50% mortality independent of their other problem. I have seen several children die within 10 minutes of starting our circuits.
So why would someone stay in such a bleak environment?
We give life for however long we can. In the ICU we give hope and save lives who would certainly die without removing fluid and waste that the normal kidney filters. But it takes a toll on us. I am the only one who has stayed. A person who embraces this job does so because they see it as a mission and have an altruistic reason other than a paycheck. Staff who stay must endure the long hours, the call, the grief when a child they have cared for and known since birth is dying. I know some of these kids since birth. In a way they are my kids as well.
Once a year we take them to Camp Chimer for 5 days, the brain-child of our head nephrologist. It’s a whirlwind of dialysis and transplant insanity. The kids live for it. As one child tearfully stated, “It is the only place where I can go and feel normal.” This gift, these memories for our kids and their parents, are priceless.
Daunting task, this unfiltered disease
Infiltrating filth, a metabolic whore
Acceptance and acclimation
Life extending treatment