Hanging over my head

June 14, 2008 at 3:23 am Leave a comment

We just got back from a week at NIH (National Institutes of Health). We participated for the second time in a research study on ARPKD/CHF. The boys were given various tests while there: echocardiograms, blood work, sonograms, an MRI for Max, 24 hour urine tests (yuck), stool samples, daily blood pressures and a 24 hour b/p test, pulmonary function test for Max, and some prodding from the doctors as well.  We learned a lot while we were there. We learned that things have remained fairly status quo for the last year, which is great news as far as ARPKD goes.  The doctors said they were pleasantly surprised.  We also learned a lot about our DNA. Did you know that 1 in 70 people carry a mutation for ARPKD? Matt and I were just lucky enough we both carried it and got married and have 2 kids with it. What are the odds?  The odds are that 1 in 70 carry the gene and 1 in 4900 will get married and 1 in 20,000 to actually have ARPKD.  Get it?? I actually carry the common ARPKD gene and Matt carries one they have never seen before.  Maybe Matt’s unknown ARPKD gene is what causes the boys to have a milder form. Who knows.  

What I do know is that even though we were given good news this week or as good as it gets for ARPKD why I am still cranky?  The thing is that this disease is always hanging over my head.  I am always waiting for the other shoe to drop.  This disease hits me in the face every day. It never goes away. I know that they have a milder form and are fairly stable at this point but it’s still there. It won’t go away. And the not knowing is what is really killing me. I hate the unknown.  I hate not knowing when things will start to change, when they might need a transplant, when ….


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Why? Mothers

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