Geeking out on kidney facts, part 2. Don’t read if you’re prone to depression.

I keep googling this stuff. I guess I’m kind of in denial about how seriously crappy ESRD is in babies. It’s really crappy. And I have this train wreck-ish need to keep looking at statistics, because I’m not ready to really accept what I’ve read quite yet.

Reading this chapter of one of the publications from USRDS, which is on pediatric ESRD (End Stage Renal Disease, what Teddy has).

In 2005–2009, close to 40 percent of children received
a kidney transplant in the first year of ESRD, up from
37 percent in 2000–2004. And in both periods, 4.2 percent
of children died in the first year of ESRD treatment.

[Patterns of] mortality
rates are similar to what is seen in the adult population,
with rates peaking in the second month after initiation
of treatment, then slowly declining through the rest
of the first year. In the early months of therapy, the youngest
children are at the highest risk of both hospitalization
and death.

The most striking findings related to pediatric ESRD
patients continued to center on the extreme vulnerability
of patients younger than ten. And issues of infection control,
which could lower the rate of complications, need to
be addressed. In past ADRs we have also noted issues of
uncontrolled hypertension and heart failure, and of sudden
death, which remain issues of concern as well. None
of these are new challenges, but the community will need
to assess them and develop new approaches to improving
outcomes in this vulnerable population.

Adjusted all-cause mortality rates for
children age 0–4 are noticeably higher
than those found in their older counterparts.
In the first month of therapy, for
example, mortality in younger children
reaches 153 deaths per 1,000 patient
years at risk, compared to 24 in those age
5–9, and 5.3 in those age 10–14.

For patients beginning ESRD therapy
in 2000–2004, the overall probability
of surviving five years was 0.88. By age,
this ranges from a low of 0.78 among
patients age 0–4 to 0.92 for ages 10–14.
By modality, the highest probability is
found in patients with a transplant, at
0.95, compared to 0.74 for those treated
with hemodialysis.

Sobering:

A total of 1634 children and adolescents were followed for a median of 9.7 years. The long-term survival rate among children requiring renal-replacement therapy was 79 percent at 10 years and 66 percent at 20 years. Mortality rates were 30 times as high as for children without end-stage renal disease. Risk factors for death were a young age at the time renal-replacement therapy was initiated (especially for children under 1 year of age, among whom the risk was four times as high as for children 15 to 19 years of age) and treatment with dialysis (which was associated with a risk more than four times as high as for renal transplantation). Overall, a trend toward improved survival was observed over the four decades of the study.

And this:

CKD in children is a devastating illness, and the mortality rate for children with ESRD receiving dialysis therapy is between 30 and 150 times that of the general pediatric population [6, 7]. In fact, the expected remaining lifetime for a child 0–14 years of age and on dialysis is only 20 years.

Finally, the expected remaining lifetime for children 0–14 years of age and on dialysis is only 18.3 years, whereas the prevalent transplant population of the same age has an expected remaining lifetime of 50 years [5].

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4 thoughts on “Geeking out on kidney facts, part 2. Don’t read if you’re prone to depression.

  1. Your little guy is so adorable! I wanted to share with you that I cared for a man in his fifities that had ESRD since he was child (I’m not certain it was from infancy, but it was pediatric onset). He was told he had about 10 years. He beat the statistics! I do hope and pray that Teddy will too!

    I apologize if I’m asking a question you’ve answered already, at what age is he a candidate for a transplant?

  2. That just sucks. I mean seriously, properly sucks. We are praying hard for little Teddy! Praying he’ll get stronger and gain the weight necessary to make transplant an option. And praying for you. You’re doing an incredible job of researching and not climbing into the hole of denial (not that you’re not allowed to visit denial every now and then!). I hope you’ve been able to connect with other families going through same/similar experiences!

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