on the heels of NIH

June 5, 2010 at 2:18 pm Leave a comment

Well back to reality. It’s amazing because it is such an intense week when you participate in the study at the NIH. But while you are there I think you are just so caught up in everything but then it really hits you when you come home. And, I’ve been having a really hard time getting back into the swing of “normalcy” around here. Mainly because our life just doesn’t feel so “normal” to me. I look around at all of these people who are living their lives and taking them for granted and I get frustrated and sad and really just plain angry that we have to deal with all of this. And like I have said so many times I do know there are much worse things out there. But I also feel like I just never get a break from ARPKD. Yesterday Gabe had a really bad bloody nose. The worst bloody nose I have ever seen. Now it might not be related to his ARPKD but Nate has never had a bloody nose and Max used to get them and still does on occasion but they were never anything like this. Matt referred to the bathroom as a crime scene. Not to be too descriptive but there was a huge puddle of blood on the floor and blood was splattered everywhere. Now if Gabe didn’t have ARPKD maybe it wouldn’t have upset me so much but it just really did.

Now about the NIH. What a week. Both boys had sonograms of their abdomens (livers, spleen, kidneys), echocardiograms, blood work (12 vials the first day, 8 the second), 24 hour urine tests (twice!), two one sample urine tests, stool samples (so fun!), cognitive tests (they are as smart as I thought they would be -they of course take after me)….. Max also had an MRI, a pulmonary function test, an EEG, and this nasal test. We opted out of all of those for Gabe thinking he wouldn’t be able to do them. And then there is Nate. We had DNA testing done on him. And Matt even got into the picture and had a liver sonogram and donated blood in a blood drive. Wow!!! And on top of all of that testing we did so many DC sites: we went to the air and space museum, the american history museum, the spy museum, the postal museum, the Pentagon, and on a DC ducks tour! PHEW! I’m worn out just writing all of that down.

THE RESULTS!!!! Well, we are still waiting on some of the blood work and urine tests that they didn’t have for us on our last day. Ironically we got an email after we left asking if we definitely turned in Gabe’s 2nd 24 hour urine test. No, we decided to bring the jug home with us for fun. Well, of course we turned that in. So who knows if they ever found it.  Overall the results are good. Both boys have good kidney function. Max has actually really high function which they said could mean something called hyperfiltration which I totally don’t understand but has something to do with the cysts and the kidneys working too hard, I think. But they said maybe he could be an adult before needing a kidney transplant. They even said the structure and texture of his kidneys are so much milder than other kids and he doesn’t have as many cysts as Gabe does. Interesting. The only thing we are looking out for is his platelet count might be dropping so we need to keep an eye on it. Gabe also has good function but has adult sized kidneys and cysts all over them. They are still saying adolescence for him for a kidney transplant. He is also still slightly anemic and has a deficiency in his growth hormone. Hello!!!!! What have I been saying. I emailed our nephrologist and he wants to see the results and then talk about going to a different endocrinologist. I told him how the other one told us to do cheetos and McDonalds and he agreed that is not the healthiest way to go, let alone low in sodium!  And Matt…… well his b/p is still 150/90 on 2 meds so not perfect. He is going to do yet another blood test and then send all of his results down to the liver doctor at NIH and then possibly to the endocrinology team down there to rule out a pheochromacytoma in another area besides his adrenals. SOOOOOOO……… we still don’t know what is going on with him.

That’s our life in a nutshell!!!!!


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Laughed at me A dictionary

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June 2010
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