I was told yesterday that the diagnosis I was handed by the smaller hospital and local care providers is probably wrong.
They'll be repeating testing because it appears some of mine was botched or inconclusive. There's a weird antibody that made an appearance, but we have no idea what that means at the moment. My lung capacity test looked shitty and almost ended with me being given medication that would have likely sent me into SVT, but at this point, that didn't surprise me.
Nothing mattered but the moment the physician at the center of excellence said that his clinical suspicion of primary PH was low.
There are several types of pulmonary hypertension and for the what feels like the longest time, I was told I had the worst of the worst. Now I may be looking at the easiest to correct. But even if it's not that one, it doesn't look like the monster. It doesn't look like primary. Pulmonary Arterial Hypertension, once called primary, is the drunken uncle with the police record that you never want to invite to the party.
I was an hour away from being booked into a surgery it doesn't look like I even needed last summer.
For something we are fairly sure I might not have.
I guess the takeaway is first, even if it's hard, expensive, inconvenient, all but impossible to get yourself to the specialty center closest to you-go anyway. Just go. I kept thinking locally they could deal with this. It kept me closer to my family and stopped me from asking for help. But that was not worth this. Going somewhere where they see patients with what you have on a constant basis will always net you more answers, better ones, and a better care team. That sucks, but it's true.
I'm so thankful. It was like I was about to have to hand back my ticket to the world of the living and it was given right back to me.
At the same time, suddenly everything HURTS.
That wall I'd put up around this to be brave feel apart. And everything is raw. The crying, the breaking down I wasn't doing is here now. I had to make plans to leave my still small children. And I feel like that put a mark on me I can't get rid of, the facing of this very real mortality.
And I think all of that makes me ungrateful.
How many people get out of that diagnosis? Get out of it with something easier?
And it hurts all over again because I know there are people out there facing this alone and it's final.
And then there is the doubt. If the testing for the other form is done and negative again, could I be stuck in the same group once more? It's probably not likely, but it is still frightening. It's as if the news is too good to be true.
I want to bury myself in a hole for a week and come out when this metamorphosis isn't so painful.
I guess right now we don't know anything for sure, but that's the best fucking news I have had in a long, long time.
Thanks to the photographer on Unsplash for the photo for the artwork