A couple of weeks ago, we got a letter from Ben’s insurance, saying they’ve approved the pre-authorization request for the genetic testing to find out if he’s a carrier for LGMD.
The prescription for the blood work showed up about a week later. At that point, it hit me that this is really happening. We’re really this close to having all the answers that current medical research can provide.
The euphoric feeling was short-lived for me; replaced quickly by an all-too familiar feeling of panic.
What if this is the wrong test? What if the results are positive and we can’t have kids of our own without passing the disease? What if the results are negative and it passes anyway?
The latter questions that keep plaguing my mind are honestly easy to answer: if we know it would pass to any offspring, we start the process for adoption. If it shouldn’t, but ends up passing anyway, we love them and are thankful for our blessings. I know the ups and downs this disease entails, so if nothing else, I can at least prepare them for it.
I couldn’t stop feeling like there was something missing from the prescription. This fear came mostly from the summary information from my Bethesda trip, which of course I. Couldn’t. Find. For. The. Life. Of. Me. to re-read and quell the craziness brewing in my head.
I have crappy luck with insurance: my paranoia was that we’d learn AFTER the blood work was done that the testing was wrong and we needed something else, and then Ben’s insurance would essentially say “screw you, we just paid for expensive testing, you’re not getting anything else”.
Like I said: the crazy was brewing.
So for the past two days, I’ve been playing phone tag with members of the genetics team from Bethesda. Who, I must say, are some of the nicest people in the entire world. They even went so far as to reassure me that I’m not crazy (yeah right). I would seriously contemplate moving states if it meant they would be my doctors for everything health-related.
After talking me down from my proverbial baby-makin’ ledge, I found out that yes, the prescription covers everything we need to make an informed decision on the likelihood of the disease passing. [insert very large sigh of relief here]
Ben and I will be heading up to the hospital at the end of next week, since he had to take off of work to meet the time requirements of shipping the tubes of blood out to diagnostics. After that, it’s another 6 weeks wait, and then we’ll have our final answers.
Holy crap. We’re really that close.