Sunday, November 13, 2011

Ah 1, 2, 3... let's Zumba!

Next week will be my first attempt at a fundraiser.

After a few years of resisting I finally took the plunge and started an event that I hope will raise awareness and a few bucks for Pulmonary Hypertension research and support.

Zumba is a fusion of Latin dance and hip-hop and is wildly popular in health clubs everywhere. I wanted to do something that was going to be a ton of fun for family and friends to participate in, and maybe reach some people who hadn't otherwise heard of PH, or gotten involved in the cause.

I've been incredibly blessed this year to return to one of my first loves and dance again. Thank you God and modern medicine! So it was really cool to have the opportunity to sort of celebrate and integrate the whole thing and channel it for PH.

If you can't make it, we are gratefully accepting donations and 100% of all donations go directly to PHA. We were really lucky and got some grants to cover our event costs - so 100% really means 100%. :)

Check it out!

Tuesday, March 22, 2011

PH and Your Kids

I left the international PH conference last year having learned a lot. But there was one topic still on my mind that I had never heard addressed, and that I desperately wanted to know more about.

When the time came, how in heaven's name was I going to explain this condition to my son?

I thought about it a lot, requested it as a topic for the conference in 2012, but didn't want to wait that long.

And then it dawned on me... I'm an educator! I know about this whole talking to kids on their level stuff, I just couldn't put my own feelings about the disease aside well enough to mesh what I knew about kids with what I knew I will some day have to do regarding PH.

So, deep breath in, deep breath out, I tackled the topic. I wrote an article for the Pulmonary Hypertension Association. I was talking to my friend Sam about it and come to find out, she spent a lot of time talking to kids about their parent's illness when she worked as an oncology nurse. So, I sent her my article and she helped me round it out into something that could be used for all ages and stages, no matter where you are at with your illness.  You can read the full version here: Helping Your Child Cope With Your Illness

I still dread the day my son asks why I'm sick. Right now he won't notice much of anything because I'm doing really well and all my medications and oxygen have been a part of his world for as long as he can remember. To him, this is all normal (ah, childhood innocence!) But, the day will come when he will start asking tough questions, and the day will also come when I have to give him some tough answers. But, now I feel just a little bit more ready.

Saturday, January 22, 2011

Heart and Soul

Having PH is like... having emotional whip lash.... or maybe it is like reading a bad Nicholas Sparks novel... whatever the case, after much sadness, I have a happy ending to my current chapter.

Not gonna lie, the last couple of weeks sucked. Within my online support group we lost two members in just a couple of weeks. With both of them their passings were so unexpected. They were around, seemed to be doing well, and then BAM! Gone.

Sometimes that is the nature of PH, and while it is a fact I usually successfully bury deep deep away from my consciousness,  loosing M. and then S., brought it screaming to light. I cried for a couple of days, especially over S. I had not met her in person, but I had the privilege of getting to know her parents this summer at Conference. They had traveled across the ocean from their home country to ours, seeking help for their daughter.

I spent so much time with them... looking into the mom's eyes, promising her there was hope. And what happened to that hope? It didn't pan out. I somehow, as irrational as it may be, felt guilty. I felt like I had offered her something false, like I was fooling myself into a false sense of security in the process. I ache for these people, who so desperately wanted to see their daughter well and now have lost her.

My team of support group co-leaders and I worried about the new members of our group too. How would they take the fact that two of our members passed so quickly? Would it scare them too much? How could we be honest and yet supportive at the same time? The truth is, you can't shield anyone from this. We did the only thing we could - gave the news, coupled with an urging to get involved towards fighting for a cure so that we don't have these losses any more.

In the midst of all of this I was preparing to go to my routine PH check-up. I was due for an echocardiogram, the first in a year, although I had a cardiac MRI six months ago. Pretty much they get a good picture of my heart every six months, and that picture is always bad. In addition, I would do my exercise test, the six minute walk, and have a check-up with the specialist. Since three appointments in a day are cake, I added a visit to the Rheumetologist later that day, you know, just for fun.

Since starting Tyvaso a year ago I have steadily improved symptom wise. This past June, I had marched in, head high, to my last cardiac MRI, so certain that my heart was finally going to show the improvement I've been dreaming about. Instead, I was crushed with the news that my hemodynamics continued to suck... big time. Heart size and functioning were still severely compromised. After fighting my way back from the black hole that news caused, I resolved "no more false hope"... no more going into these appointments with expectations that will be dashed. 

This doesn't mean I lost hope, in fact I still had it in spades, but I stopped setting myself up for disappointment by thinking that this time, this time will be different. Instead, I continued to just focus on someday.

I don't even know how to make this story short, so bear with me. The echo procedure was standard, my six minute walk stellar, and my specialist said words I had actually dared hope for, "We'll see you in six months". Prior to this I had needed to see him every three months, and had done so for three years, but my steady functioning improvement was finally enough. Echo results weren't available yet, but I was happy enough with that.

Later that day I went to my Rheumy appointment. I walked in and he says, "Hey! How are you? Saw your echo results, looks good!"

WHAAAATTTTT??? I had never ever ever heard the words "echo" and "good" in the same sentence. Quite the opposite, actually.

I made him open up the computer to my records, and as he read me my results I entered a near dream state. He was saying to me the very words I had imagined and fantasized about and finally put aside...

Echo results: "Degree of right ventricle dilation,
dysfunction, and severity of tricuspid regurgitation has all

In addition, the right atrium is back to NORMAL, down from
severely dilated and my moderate tricuspid regurgitation is now
NORMAL!! The right ventrical still has significant dilation and
systolic function is still significantly compromised, but both have

Translation: My heart is remodeling itself and repairing much of the damage of Pulmonary Hypertension. I'm not out of the woods yet, far from it. It could go back the other way. But for the very first time ever my body is showing inward signs of improvement.

I got a bit emotional right there in the office. And, since this doc has, well, no inner filter whatsoever, he turned to me and said the words that are destined to become classic in my circle of friends and family:

"Well! Ain't that the shit!"

It is, Doctor, it is indeed!

Just when I was on my knees emotionally, so unsure of where I was going to find my footing to get back to my positive outlook, God opened this window for me. There is hope in this disease process, even in the hopeless times. It may not be your time for improvement, just as so often it has not been mine. But hope is there.

Wow, this feels good.