It's always amazing to me how certain things pop up in our lives just at the moment they're needed/relevant.
Enter 14 year old Emily Qvistgaard. This amazing girl has end stage renal disease and is waiting for a transplant. Recently my friend Dave Tweedie was able to help make her Make-A- Wish come true: recording one of her own songs.
You can download this song free on iTunes :)
Her insight and happy disposition are inspiring. I cried like a baby watching that video. I think we can all take a page from her book.
The parts that got to me the most are:
"Love life. Love the way you live it
Don't try, just keep on breathing
Wishing on a shooting star"
"If I could get away
I'd run away
and stay away
I'd walk right out that door"
Knowing what having a chronic illness is like, I say "Amen" to that
"When I get a chance, you know I'll take a chance"
"You are the writer of your life and
You choose how you want the ending
Decide how you want to tell it
Shine on, there's nothing to it
Release all your weighted regrets
Just let nothing get your hopes down"
I really identified with this song and couldn't have heard it at a better time.
In this article it states "through diet, and a daily dose of several medicines, Qvistgaard was able to stabilize her condition.
She religiously watched the amount of protein and salt she ate. Today, she even gives herself daily injections and lives with less than one-quarter kidney function."
Wow. Different illnesses, but strikingly similar circumstances. If I start to feel sorry for myself about my situation I'll remember Emily, who at ten years old, faced what I didn't have to deal with until age twenty-four. I had more than twice the life she did before getting sick. This girl is incredible and inspiring. I wish I could give her one of my kidneys.
So in regard to kidneys and taking chances, I have some updates:
-My kidneys are functioning at 60% so I will be cutting back on the hemeoperfusion(blood filtering)again and seeing how my renal function fairs. We've slowly been tapering it down this year, from every two weeks, to recently, every 4 weeks. Now it will be every 8 weeks. Hallelujah!
-I will be weaning off the steroids over the next 6 weeks. I'm going to apologize in advance for the Hulk behavior that is likely to arise from this.
-After I've weaned from the steroids I will be taking part in a clinical trial and will be taking a new experimental oral drug. I'm taking a chance. It's my life and I'm choosing how to write it. (Thanks Emily)
The trial is 6 months long (from Sept-Mar), so it will bring me to the 2 year mark of getting sick and to my 27th birthday. Two pretty significant milestones, I must say.
During that time I will be monitored very closely, all my specialized medical care and prescriptions will be covered (this is a HUGE weight off my shoulders), AND they will be paying off most of the enormous debt I've already accrued. I really see this as an opportunity to get my life back and I'm willing to take the risks to have that.
Please, any positive energy (prayers, thoughts, mojo, etc) you can put toward things going well would really help. Put some out there for Emily, too. We need someone like her around.