Sunday, November 14, 2010


Original Date: November 12, 2009 

I knew I was in trouble the day a cardiologist told me the best case scenario he was hoping for was to find a hole in my heart that we could repair. He told me there was a worst case scenario too… but we weren’t going to talk about it unless we got there. If the best thing is a hole in the heart, what’s the worst? Well, as it turned out, Pulmonary Hypertension of course. We got there.
It is difficult to describe to someone who hasn’t “Been There” what it is like to lay in a hospital bed, have a doctor look you in the eye, and rattle off the name of some life-altering and life-threatening disease you have never heard of and apply it to you.
Where do you go from there? I imagine people have a huge range of responses. I only know my own. I freaked. Looking back on the months after diagnosis, it was pretty much me in a dark cave. Scouring the internet for any information I could find (a stupid idea – most of it is woefully outdated and false and will scare you senseless), finding sources that finally explained something updated and accurate, pacing the house late into the middle of the night just trying to wrap my mind around the whole damn thing. Crying. A lot.
During the day you probably wouldn’t have seen much of this from me. Fake it until you make it. I was still working, I still had a child to care for, a family and friends to respond to. People who say “As long as you have your health you have everything” haven’t actually lived through the blow of loosing your health and coming through on the other side still intact. I am very grateful there is more to life than just health, or I’d be screwed.
I have a wonderful support system, but for a long time none of it helped. I just had to deal on my terms in my own way. But, it really comes to a point where you must make a choice for yourself. Either keep living your life in a state of shock and grief, or pick yourself up, brush off, and start living again. There is no in between in my case. It was live, truly live, or face death head on feeling like I was… well, dieing. That doesn’t seem like such a good option, certainly not the mindset that would keep me strong for the fight of my life.
I’ve tried to explain to people how once you have a disease like this you never ever for a single second get to forget it. They often look confused – if it such a part of your everyday don’t you just get used to it? Not really. I remember every time I pop a pill – five for the PH and a huge handful of vitamins and supplements for a bunch of other reasons – all PH related. I remember every time I look in the back of the car at a load of groceries and try to gauge how heavy each bag is and which I should carry together so I don’t arrive in the house breathless and dizzy. I remember every night as I shove a tube of oxygen up my nose, and many times as I fall asleep and feel my heart palpitate with each breath. You never get to forget.
But, you can’t stop living either. And you have to find ways to do that. Some days you need more ways to focus on living over the disease than others. So, I’ve developed an arsenal.
Some are serious – like totally giving this whole thing up to God. I believe I will be healed. I don’t know how. I don’t know when. But I WILL be. It is actually that simple. In the meantime though, I still have to get by. I have to live the human side while I wait for the divine. This fight could get a hell of a lot harder before it gets better.
As much as I believe in the power of prayer, I also believe in the power of positive thinking. If I believe I will be healed, if I truly believe this is going to end up okay, my attitude is going to be better. And if the mind/body connection is half as strong as I suspect it to be, just keeping a positive mindset will keep me stronger.
The support system of friends and family I have gets me really far. I have lots of phriends in the PH Community who get the struggle first hand, who offer advice and encouragement on treatments, and sometimes a “Yeah, I know that sucks” is enough too. I have healthy friends and family who are amazing. Always checking in, lending a hand when needed. I don’t know how many people are praying for me – but I do know that over 450 people have read this blog and that’s a lot of positive vibes and well wishes. I believe in the power of that too!
Then there’s the more light hearted side. I only go to appointments wearing cute shoes. Cute shoes make me happy. If I don’t have to have an exercise test that day, you can bet they’re going to be cute and hot and with a minimum of three inch heels. If I do have an exercise test, even my sneakers are ones that make me smile.
I only take my meds by washing them down with water from a wine glass. I don’t know why – but nice stemware makes me happy too. So if I use it when I’m doing something I don’t want to do – like take $7,000 a month in drugs – it makes it a little easier.
Lately I’ve been moving to a more altruistic lifeline – reaching out and helping other patients. I am thrilled to have been asked to sit on a Patient Advisory Board for the Pulmonary Hypertension Association (PHA). We’re going to work together to reach other young people who have so much of their lives ahead of them as they also navigate PH. I’ve also joined “Generation Hope” – another PHA organization that consists of a private e-mail group where we can support other young patients. How great is the name of that group? I hope to do some writing for the quarterly newsletter that PHA puts out nationally. I want to turn all this PH knowledge I have bumping around in my head into something that helps others.
Oh… and I’m getting a tattoo… something to remind me of my battle, but also of the victory that will come. Stay tuned on that one! I just put it in writing, on the Internet no less, so I’d better follow through!

1 comment:

  1. I love this! I found it today and got this far before my girls woke up. I am looking forward to catching up! I love your attitude. My 5 yr old daughter was diagnosed with PAH in august of this year. After the accidental discovery of 2very large VSDs and a PDA. We are not sure yet if the PH was there from birth or if it was caused by the holes. We have a re cath mid december