whining a bit

I usually put stuff having to do with Teddy over on his own blog, but this is really more about me.

Please note, those of you reading this. I am NOT in any way trying to make you feel bad for complaining about the annoying things in life. I’m not begrudging anyone their troubles, nor am I saying that people don’t have a right to feel the way they do. I don’t expect anybody to change, and I’m not talking about anyone who reads this blog. (because I know all three of you, lol.) Everyone can still feel free to whine about stupid crap to me or in my presence. I know I still whine about stupid crap, myself.

I’m in a continual search for the answer to this question: How many babies (and how many kids under 18) have renal failure in the US? Harder to find that than you’d think. I can find how many NEW cases per year, but how many total… it’s harder. (there’s even an article about this here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2064944/)

In this search yesterday, I found the US Renal Data website, and an article from the New England Journal of Medicine. There’s more stuff here: http://teddybearsjourney.wordpress.com/2012/03/10/geeking-out-on-kidney-facts/  but the real gems are:

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.

The long-term survival rate among children requiring renal-replacement therapy was 79 percent at 10 years and 66 percent at 20 years. …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).

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

Go read those quotes again.

Now. Are you having such a bad day?

And I don’t mean to sound like that. I don’t mean to be being a total bitch about this. Everyone has bad days and everyone hits the end of their rope, even if it’s just ridiculous stupid everyday stuff. When we’re home from the hospital and things are going well, I have those days, too. I have those days where perfectly NORMAL stuff makes me frustrated. It is NOT as though I now go through life completely unruffled by life’s little bumps in the road.

But my sympathy point has completely shifted, and particularly when I’m on day 13 in the hospital and I miss my kids and my husband and I miss sleeping on a bed that’s not plastic and that doesn’t angle towards the floor and I miss sunlight and fresh air and not having strangers all up in my business and dammit I just don’t want to be here anymore, and I know that, even with treatment, there’s a hefty chance my kid won’t see Kindergarten, let alone high school and let’s not even get so hopeful as to think ahead to marriage and jobs and kids, and the almost paralyzing fear I experience every time I think that there’s a chance that Randy might not be a good match for an organ for Teddy and then… and then.. what, I don’t even know, we have to start begging friends and family for a kidney, or go on the list and wait for God knows how long… I hope it becomes apparent why seeing things on FB about “oh, my life is so terrible” and “everything’s out of control” and knowing that it’s about kids having colds, or the washing machine on the fritz, or whatever…  it kind of makes me want to reach through the computer and choke the living crap out of people.

I’m sorry, because I know that makes me seem small and petty.

I’m at the same time still able to be happy for these people – my friends – that they get to experience those types of terrible days.

And on top of all that, I know people online who have it worse. Two of the kids in the Renal Warriors group on Facebook have coded in the past month. So even though things can be tough with Teddy, you know, he’s always managed to keep his heart beating. And so on our tough days, I think about them and how much I still have to be thankful for.


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