Sunday, November 14, 2010

The First Post (Pulmonary Hypertension Awareness Month)

Original Date: November 2, 2009

Well, here I am blogging. I’ve kicked around the idea of doing this now and then. Kind of wondered what the point was – sure, my thoughts are interesting to me (or I wouldn’t be thinking them, right?) but to others?? I haven’t quite caught on to the whole “my life is an open book on facebook/youtube/myspace/twitter” thing… Although I am, of course, a facebook addict, I mostly share pictures of my insanely cute kid and keep up with my friends (and many of their insanely cute kids).

My dad has bugged me to be a writer for as long as I can remember (Hi, Dad!). Okay, so maybe I’m finally stepping up. Or, maybe, I finally have something that is so important to say that I think the world needs to hear it. Yeah… it is probably more of the latter (No offense, Dad).

But here we are – November 2009. It is Pulmonary Hypertension (PH) Awareness Month. My second such month in a line of what is looking like many to come.

I started “going public” with my disease last year, so there’s a good chance many of you even taking the time to read this (thank you, by the way) know my original story and know a little about PH. I’m actually not going to dwell on that part much, at least for now.

In short, PH is “a simplified name for a complex health problem” ( It is progressive and currently incurable. It causes chronic high blood pressure in my lungs and it effects my heart in a big way. So big, in fact, that the Grinch and his heart have nothing on me – mine grew a storybook three sizes a while ago, and it doesn’t like it! Average survival rate, with treatment, is 50% at five years. I don’t know about you, but those odds (while improved from even a few years ago) sound pretty crappy to me. Thank God I’m not a statistic.

So, what does PH mean to a real person, not as a medical diagnosis?

In the day-to-day this means I take a shit load of drugs (Pardon the profanity -I decided this is my blog, my voice, and I say “shit” sometimes!). It means I have to sleep with an oxygen tube up my nose. I also think this is shitty. It means I spend more time at doctors than I care to think about. It means that I can’t carry the groceries, prod a toddler along, and block the dog from escaping all at once because if I do I will probably pass out. It means I used to kick box and dance my heart out and I can’t anymore. And that breaks my heart. It means I look at my son and pray in a way I didn’t think possible that I will live to see him grow up. It means I can’t talk about that part any more because as brave as I am (almost) every day, thinking about him like that makes me start to cry immediately.

PH means I look at my phriends (others in the PH community) and stand in awe of their fights. I know I have it easy compared to some. Many of them are attached 24/7 to pumps that deposit medication directly into their bodies through a tube in their chest. Mere minutes off these medications could be life threatening. The side effects of the medication can be incredibly debilitating – but I’m told even intense physical pain, nausea/diarrhea , flushing, rashes, and line infections beat feeling like you can’t take another breath or get out of bed. And I believe them. It means waiting desperately for a phone call that donor heart and lungs have been found, but knowing that after transplant a whole different fight begins. I also can’t help but wonder if this is my future too. PH is, after all, a progressive disease, and I have no idea how I would handle some of that. Some of them are parents of PH patients – I can’t even imagine what that must be like, but they are some incredibly strong people.

PH means some good things too. It means I’ve found out I’m stronger than I knew. It means I used to believe in miracles, but now I’ve lived them. It means I’ve found a network of friends who fight the same fight I do and I am so deeply grateful for them. It means my friends and family I had around before I was sick  have rallied around me more than ever, and I feel their support and love daily. It means I’ve renewed and deepened my faith in God, and also made a few concessions towards modern medicine that I might not have, had I not gotten sick. It means I look towards the future with a sense of insecurity I hate, but that is balanced with unshakable faith. It means that cliche of “when you get sick every moment becomes more precious” is actually true.

I’m not really sure what else I’m going to write about. I think I’ll take it as it comes. If anyone reading this wants to hear more about something, I’m open to inspiration. Also, I would love it if you would leave a “I was here!” comment so I know, well, that you were here! :)
Take Care

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