Friday, February 11, 2011

the power of facebook

Through this testing for donation process I've shared my story with just about anyone who will listen. There's this blog, postings on facebook and twitter. I email and text updates, both good and bad. People who know me generally know what I've been going through.

My brother's been just the opposite. He hasn't really said a word, at least not anywhere I've known about. We had one quick conversation about it and he let me know that while he appreciated my cheerleader, the glass is half full stance, he needed to be more realistic about it all.

He didn't want to get his hopes up.

When I step back and look at the bigger picture, it's because he has too much at stake. For me, this has been, and will be, quite the life changing journey. After surgery and recovery though (which I'm hoping will be as uneventful as possible), I'll be down one organ but I'm hoping here too that me and my remaining kidney will have a long and healthy life together.

For my brother, it's different. Different to the point I can't really comprehend. Right now he's tethered to a dialysis machine. Three times a week he's hooked up for hours and his life literally needs to revolve around this. He can't travel. He can't be more than an hour away from a hospital, as his chest catheter is prone to infection. During blizzards, when he's sick, when he just doesn't feel like it anymore, he still has to make it to his appointments. Dialysis is non-negotiable.

After surgery, should all work out (and I'm hoping beyond hope here too), that'll be over. He'll have a kidney that functions well for the first time in his life. One thing I learned is that dialysis doesn't replace full kidney function—it brings a body back to just above the failure point. A healthy kidney would blow dialysis out of the water. And would make him feel better than he has in a really long time.

Yesterday, as I checked my phone on the way home from yoga, I saw he'd tagged me in a facebook post, announcing that a transplant was in the works, that I'd been cleared to donate and that things were moving forward.

And now, it's real.

Seriously real.

More real than the 20 odd vials of blood, 4 urine tests, 2 cat scans, impromptu psych evaluation, hours in the lab, countless consent forms, phone calls with great and potentially disastrous news, weeks of waiting, living in the unknown . . . his saying it out loud and sharing it with people he knows?

It's real.

It was amazing to see the outpouring of support from the many friends who've shared his journey with him. Who have no idea who I am. Who were just learning this news that I've been living with for months, for the first time.

It's not just my story anymore. It's our story.

One that we're collectively hoping ends with happily ever after.


  1. This is a heroic thing you do. I suspect we all feel at least a little that we should be willing to stuff like this for siblings, but you know what, I wonder how many of us can. You stepped up and my hat's off to you. I wish with all my being that this goes super-well, that you both have at least 50 or more healthy, happy years ahead after this procedure is successfully completed. Perhaps you'll take a picture of you, the dog, and your brother strolling the beach (Coney Island?) celebrating normal life after the transplant.

  2. Yup. I didn't talk about with anyone while Tim was still in testing; didn't want to have to tell people it hadn't worked out, didn't want to have to think about it. I basically ignored the process until I got the call, Memorial Day weekend, that we were ready to schedule surgery.
    I'm thrilled for the both of you!

  3. I am so emotionally moved by all of this. It is too much too ask but sooooooo much to offer. You described how different you and Dave are in your approach to all of this, but I think that seems to describe your different approaches to life in general. That said, there is a beautiful bond between you and Dave that started so many years ago, growing up so close in age, and remained forever, despite those differences. What a gift you are willing to give to him. Your willingness and your bond make you richer and more fortunate than a lottery winner. I will keep you both in my thoughts and prayers. You are amazing!!!

  4. Hi Lis congrats on the clean pee! I just forwarded your blog to a good friend who received the gift of a kidney about six years ago and who is going strong!

    As a side note your son has some awesome dance moves.

    Warm wishes to all! xoxo Dan