it makes me crazy

December 23, 2008 at 5:54 pm Leave a comment

Every six months when we have to do blood work for the boys I get crazy. I hate that in the first place we have to do blood work. I hate having to wait for the results. I hate stressing over the numbers that are out of the “normal” range. I hate the feeling I have afterwards of things to come in the future. I hate that Matt always leaves the appointments with a positive outlook that the boys aren’t in kidney failure. I hate that I always leave the appointment thinking that even though we are not even close to kidney failure there is a change in numbers and I have to think about it and worry about it. Ugh. Too much in my head.

We had our six month appointment with the nephrologist today.  Max is VERY  status quo and has 100% kidney function. We just need to keep an eye on his blood pressure since he has grown.  Other than that all is very quiet with Max.  Gabe is also doing well relatively so compared to other ARPKD children.  But, his iron levels are extremely low and have dropped a considerable amount in the last year. But my nephrologist doesn’t want to treat it he wants us to discuss with our pediatrician.  Then Gabe is low on the weight and height chart. 10% for weight and 5% for height. Something we need to keep an eye on. And then his GFR (indicator of kidney function) has gone down slightly.  It is still okay but possibly going down which would indicate the beginning of kidney failure.  We have to retest in 3 months.  He did have a virus last week which could be the cause of the lowering of the GFR.  Also, both boys platelet counts jumped down but at this point are still well above normal but yet another thing to keep an eye on. This would indicate enlargement of the spleen from the CHF and portal hypertension. At this point we are still good but just something I will be thinking about.  

It just boils down to the fact that I hate that the boys have this disease and hate that it makes me so crazy. It’s not all about me and really only about them and their health but this blog is all about me so I have to vent about all my craziness.


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CRANKY Back to Reality

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