Sunday, November 14, 2010

Outdated Updates

Original Date: May 23, 2010 

I’ve had the gnawing thought in the back of my mind that I really aught to update this blog. It appears people are actually still reading it (hello!) and it has been sorely neglected since February (eek!), and my last post wasn’t exactly me as my usual cheery self. Score one for PH.

Well, I’m back, and PH has had its moment, so let’s turn the tables, shall we?
The truth is, I haven’t updated in part because I feel freaking fantastic. Or is it PHreaking PHantastic? Whatever! I started Tyvaso and, as usual, the anticipation was much much worse than the reality. In fact, there’s something rather wonderful going on.

I’m walking actual miles. I’m working out, planting gardens, painting walls. Wait… this is the life I actually remember before getting sick. All of it. It really is. I haven’t had a symptom in months (okay, a bit of chest pain, but let’s not talk about that). On my last six minute walk I surpassed the expected distance for a healthy person, and certainly beat my own previous record by a nice couple of laps.
But it gets better… I’m sure Tyvaso has something, a lot of somethings, to do with all this. But, I’ve also been seeing a naturapath and she’s pretty amazing. She started working on my inflammation levels, which previously were at numbers no one had really seen before… probably thanks to an autoimmune disease which is probably causing or aggravating the PH. There are a lot of probablies in this field of medicine! Well, those numbers, and all my bad numbers in blood work, are drastically better. And I can feel it!

That’s all the good, very very very good, news. The bad news, or same old news, is that as far as we know, my heart still looks and functions like crap. And that scares the doctors (you can see it in their eyes) and so it still scares me. So, I go in for another Cardiac MRI in a few weeks. Here’s hoping that something, anything starts to look better inside. Because as nice as it is to feel this great, that could all change in quite literally a heartbeat if something doesn’t get better. And I am acutely aware of that every day.

The other thing is, most of my PH friends still suffer a lot. More than any of us, myself included, can fully imagine. I’ve lost several phriends in these past months. Many of them got something else and PH made it impossible to survive. Most of them were around my age. I’ve found this to be an occupational hazard of connecting to the community of people who understand what I go through and live what I live (and so much more). People die. A lot. And until that changes, even if I continue to do well, I’ll still be here making a huge stink about causes and cures and hope.

The international PH conference is just a few weeks away! I’ll be speaking on a patient panel and hosting a get-together for the support group I co-lead online. Here’s hoping there is some fantastic news in breakthroughs and emerging research that will keep us all going.

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