Thursday, May 11, 2017

Getting Back Some Hope.

I was really worried going into the local lung center. I had no idea what to expect, but meeting new medical professionals I am always worried.

The first thing I noticed in the office was a big quilt, and on it, instead of the warm grandma-looking things you normally find, were 3D dark spiders and snakes and lizards. So puffy, and with embroidered bright eyes of all colors. Everywhere else on the wall were written reminders to do as much good as you can. And at that point, I figured I was probably in the right place. No medical professional that sucks keeps 1. a quilt like that in the waiting room or 2. that many reminders to be a good human being. 

And I was right. my pulmonologist is as well loved as my cardiologist, they are local celebrities in that right and for good reason. He listened, and we made a plan to do all of the testing available in hopes of shaking off the primary pulmonary hypertension diagnosis. 

Because, as I've said, if you have to invite PH to a party, primary is one of the ones you don't want showing up. The sleep apnea test was negative, but they might try that again as well. Just to be sure. And first the round of blood tests for genetic disorders, the scan to find any shady clots that could cause this, and the catheter they run into the right side of the heart to measure pressures. That one kind of scares me.

It will be my cardiologist handling it, and I should just get a local anesthetic, but I have heard some horror stories already and just am not looking forward to that at all.  But it's still the gold standard for measuring that. 

It sounded pretty similar to what they offer for some SVT sufferers. They break up the wiring in the heart causing the attacks by burning or freezing the pathways. Only this will just be a measurement, so it should be even less invasive. 

The idea of anyone running a wire into your veins and going in through your heart while you are hanging out awake, though...

That's going to be rough. 

But the idea that maybe this isn't the bad ass form of PH, and that even if it is, this MD has a plan, that made me feel less hopeless. My pulmonologist gave me a sense of security and upbeat thinking that I have found really hard to come by recently. And I can't ever thank him or the people at his practice enough for that. 

When you get bad medical news, it sort of feels like the world starts sinking in around you. 

Maybe I don't get lucky enough to outrun the diagnosis I was left with, but even if I don't, I have some of the best medical professionals on my side. 

And they'll help me deal with it. 

I managed not to try to squish the big puffy spiders and snakes and stuff on the quilt this first visit, but no promises for next time. 

1 comment:

  1. There is always hope as long as we live, there is hope. I'm sorry you're going through all of this but I'm glad you are confident in the medical professionals inn your side.
    I love you! Keep your head up and keep writing! -Frankle