That is how I went into my appointment today. And I didn't need to - he is absolutely in the same mind frame as far as the C1 Esterase Inhibitor Deficiency goes. Type I HAE. Not only that, but he seemed to be able to tell that I have been bounced around in the system... That I feel so backed into a corner that I felt like I HAD to come in overprepared - that's how dismissed I have been.. And he could tell.
But here is the overwhelming part.
This thing - this C1-INH and HAE is so serious and so scary that it's all we have been focused on. I mean - this is a HUGE issue. And he kind of dismissed it - not in the negative way - not at all saying it's NOT a big deal - but saying that it is distracting from the possible true underlying problem.
He is ordering genetic testing to be done, more bloodwork, and sending me to an Immuno-Deficiency Specialist - and soon! In fact he said that he is very concerned. Looks like we are going to be looking into a much BIGGER underlying immuno-deficiency issue. He's not sure (which is why he is sending me to a specialist)...
I guess I was seeing this C1-INH as such a big deal that it completely caught me off guard that he is ALSO looking for ANOTHER underlying cause that is so serious that it makes C1-INH look like child's play.
Safe to say, it was a very intense, very productive, and overall a great appointment (my doctor is beyond amazing), but also extremely overwhelming and frightening.
My biggest reliefs are that I KNOW that I am in good hands and I know that things will be taken care of and investigated until an answer is found.
Just hard that I went into yet another appointment with some answers but still more questions and still more investigations to be done. At least there is finally a cohesive plan.
What do you do after an overwhelming day?
I ate leftover Chinese takeout and a Skoreo blizzard from Dairy Queen.
And had a nap.
:)
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