Monday, September 18, 2017

The Waiting Game with Pulmonary Hypertension.

Anyone who has had a run in with an illness that required testing can tell you about the waiting game. 

It's that time period that feels like a million years for every week. 

It's between you and getting the help you need. 

And it's hell. 

And that's where I'm at with it. Waiting. For another week to finally get my rotation into the center of excellence for PH care. The hurricane delayed things we shouldn't have waited on by another solid month.

It's harder to breathe now. Harder still to get anything noteworthy done. 

When you sleep, which is difficult when you feel like you've inhaled a bowl full of fiberglass, you wake up fighting for your breath. Sometimes the pain is more like a boot through your chest, but it's always there to remind you that, hey, your body is trying to kill itself. 

I'd been unnerved by getting a right heart cath done, but now I just want everything to hurry. I want to be done with it. I want to be in the month or so of new treatments when finally I can feel better, feel more like me. 

One week for answers. One week for help. 

I was told the right heart cath may be done on an emergency basis, and sometimes if your lung pressure is too high, you'll be kept at the hospital. Don't get me wrong, those things are still heartbreaking. And still a little scary. 

But I've never been more ready to fight to get better.

And "the waiting game" can officially kiss my ass. 

Tips for staying sane while playing "the waiting game"...

1. If you can avoid having to do it, fucking avoid it. It might mean a different hospital, but if they can offer you decent treatment, take the one without a waiting list. Many times that won't be the case, and the rarer the disease or the more rural your area, the more it just isn't possible. But, if you get a choice of two good facilities...

2. The time between you and getting the medical help you need should be as happy and as calm as possible. Anyone who can't help but be an asshole needs to disappear (generally I recommend that as a rule of thumb anyway, but especially right now). 

3. Watch all the things you haven't had time to watch. Eat like you need to but don't be afraid to get the healthy take-out or prepped meals. Have help with the housework. Many of us need permission to take downtime. Take it now if you are at all able to. It's embarrassing and it sucks, but let other people help. 

4. Spend time with the people you love. It's hard when you feel terrible. But it might be the only thing that helps. You might not be able to do big outings for a while-stick to the small stuff. 

5. Connect with other people who've been down your road. It helps to know it's possible to get through all of this.

6. And, most importantly, don't give up fighting. This might be a crummy portion of this journey, but it's truly just the beginning. There are worse and darker days ahead, but there are so many better ones, too. And you can face them both. 

All there is to do now

 is wait. 

Giving credit to the photographer who supplied the image for my drawing-

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