Wednesday, April 7, 2010

Still Waiting

I have been watching our online access for test results to see if the test we are waiting for is complete. There is a code that says "Call for Results" that has been posted for a few days. I've called the clinic, but they are only there one time a week. And if the doctor has conferences or other interfering commitments, they do not hold clinic that week. So I have been leaving messages, and just very much hoping for a reply.

I decided to look up the lab where the test is being performed to see if they could give us the results. They can not give results, but they could tell me if the test was completed. I guess it is good I called, so I don't keep calling to leave messages at the clinic. The test is not completed yet, and has a scheduled completion date of April 14th. That is only one more week! But it is still a whole one more week!

Really, I am trying not to get my hopes up that this test will have answers. It should give us answers if there is a mito disease caused by maternal inheritance. But because of the big range of inheritance factors, and the possibility that all the problems we are seeing are not actually mito disease, there is a real chance that this is not the test that is going to give us the diagnosis. And even if the test shows a result, it may not actually give us a diagnosis. It would give us more certainty that there is a mito disease, but we would not know exactly what that means other than there was a variation found that is indicative of mito disease.

So hoping for certainty in a world where uncertainty is the more common result would be foolish. Call me a fool for hoping, but I do understand the limitations.

In the meantime, I've really found it helpful to look over the material provided by organizations like those I've linked on my side-bar. Whether or not we ever have a diagnosis of mito disease, I have learned just how far-reaching the spectrum of diseases really is and how many people and families are affected. I am meeting other families who have questions and sometimes even answers, who are facing life with medical complexities and handling it all so admirably. My mind is intrigued by the advances we've made in medicine, and in understanding how much more areas we have not even come close to yet.

So we wait.

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