Wednesday, June 28, 2017

Betty White, the Neverending Pre-Op, the Blackout, and the Lasagna.

Having a rare disease sucks. Having a rare disease that is terminal but so individual that nobody can tell you how long you have left is sort of a mixed bag. I mean, you won't outrun it. You've met the thing that is going to kill you, but you can't apply a statistic to yourself in any accurate way in terms of years, and that gives hope. But having a rare disease that requires some serious invasive testing like a right heart catheter is absolute balls. 

We had everything scheduled and planned. I had to go in for x-rays and blood work and talks with professionals. I was luckily cleared of doing the left side of my heart since everything we've done showed it to be in good shape, so it was just this: we'd go in and get the right side done in the morning. But it required most of my day in a lonely vanilla colored waiting room. Thank goodness I remembered to bring my new Betty White book from the library. 

I actually admire her more, if that were possible, after reading this. It's an account of the things that matter to her along with some personal experiences and some lessons on living a good life. I think people see some of her roles and this stereotype sticks in your head and this fleshes it out in ways only a book can. It was awesome and an easy, fun read. It made the endless waiting between checking off boxes of which medical professional you've seen so far less lonely (also, can hospitals get rid of that? It's like the world's most depressing scavenger hunt). 

I spent the rest of the evening on the verge of tears (invasive testing and surgeries are always scary for me) but taking the kids to the bookstore to play with my husband. I was fighting a respiratory virus and taking care of my toddler who was in the full swing of it and I just could not shake that terrible idea that this could be my last night at home with them. I kind of repeat that line from Doctor Who when I get into that mindset. 

Don't be lasagna. 

It's my mantra for not dying and also not being a serious mess about the whole thing. 

Needless to say, not a lot of sleep happened. A lot of tears and praying, but not sleep. 

And a call we got at 5:10 AM was from the medical staff to inform me that they would not be doing any surgery today.

The electricity was out. 

I'm still not sure how to feel. I'm so frustrated and disappointed because we were right at that point where I might be able to get REAL help and treatment. But, at the same time...

Maybe this was lucky. 

I put in for my records to be transferred to our center of excellence early and for them to do my right heart catheter. In my town, this rare monster called pulmonary hypertension is virtually unknown. And with the addition of my tachycardia, we're talking serious trouble. I'm realizing that all along my pretty wonderful team of MDs have been telling me that they can't handle this here. The catheter was the last step with them and then I was headed this direction anyway. So, I'm attempting to go to the specialist center for the entirety of my care. 

When you're talking about something that affects a very small percentage of the population and is always, in the end, a life-taker, I'm not sure I should have waited as long as I did or for all this to happen to take charge of my medical care. 

It's time I can't get back. 

We even recently discovered that my heart medication is completely counterindicated for person with PH, which makes a lot of sense now, but none of us including my medical team even noticed that before. 

So, here's hoping I find a place where rare is not unknown.

And I'm going to keep trying not to be lasagna. 

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