Nothing is easy

March 14, 2012 at 8:26 pm Leave a comment

We went to the nephrologist a few weeks ago. This was Max’s first visit with him and Gabe’s second. He asked me how long it had been since we did 24 hour blood pressure readings on the boys and I said almost a year. So he decided to do them again. So last week when I was doing the “poop run” I picked up the b/p monitors. Saturday afternoon we put them on the boys. Of course they both complained about it! Gabe said it bothered him and Max didn’t want anyone to see him wearing it. We decided not to go to a party we were supposed to go to and just hung around the house. I was going to drive the monitors down to the city on Monday but Gabe got sick so I wasn’t able to drop them off. Matt said he would drop them off on his lunch yesterday.

Today I received a call from the nephrologist with some concerns with both readings. For Gabe he said during the day the readings were all great but at night in the middle of the night there were a few high readings, which concerned him. And then for Max he said only 10 readings out of 56 were normal and none of those 10 were below normal. And of the high ones they were really high like 150/70. So….. we have to repeat the 24 hour b/p readings next week!!! He said either Max’s machine malfunctioned, the cuff was too large, or his b/p really is that high. Let’s hope it was one of the first two.

The thing is I just feel like nothing is easy. First of all the obvious… it’s not easy for them that they have ARPKD. Then it’s not easy that they have high blood pressure. And then they have to do 24 hour blood pressure readings. And then it didn’t work out the first time!!!! I know in the scheme of things 24 hour b/p readings are easy. But it’s just our luck they didn’t work the first time. I’m just overwhelmed by it all!!

The diagnosis itself. The 8 pills a day Gabe takes and the management of those. The 5 pills a day that Max takes and the management of those. The 6 specialists Gabe sees and the making of the appointments and going to the appointments. The 3 specialists Max has. The management of their blood pressure by taking it routinely and keeping track of the numbers. The worry in general and then the worry that Gabe isn’t gaining weight or growing, the worry that their blood pressure is too high, the worry that their blood work isn’t normal, the worry that their kidneys are starting to fail, the worry of what their liver disease holds for them, the worry that Gabe will never be dry at night, the worry that puberty will cause Max’s kidneys to start to decline, the worry that our insurance doesn’t pay for enough anymore and the bills are getting out of hand, the worry that they will not be healthy for their whole life…… and the list goes on and on.


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World Kidney Day Happy 6th birthday Gabe

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