Wednesday, March 16, 2011

did someone say transplant?

Now that there's not a set date in the offing—even if it's only a placeholder—all donation drive has disappeared.

It almost feels like it's not happening.

After that first crash and burn plunge into the depths, it's like the experience has been wiped away.

Not completely, there are traces as if on a used chalkboard where you can see faint outlines of what was written before, but the immediacy, the reality . . . gone.

I had thought in 5 days I'd be in surgery. I'd been building up to that, making plans, arrangements, mentally preparing, physically honing. I'd built the boundaries I'd needed to get me up to that point. I grappled and angsted (I know that's not a word but it's something I'm very good at regardless), I panicked and found strength. I reached out and reached in. I geared up and was as ready as I could have been to face this huge unknown.

But the rug was quietly slipped out from under me.

And if it wasn't for my brother keeping me up to date I never would have known.

I've learned, at least in my case, that no news is good news. I generally haven't heard back about test results and had to assume all was fine as I moved forward in this process. I was never told that I passed my psych evaluation, that my second 24 hour pee test was ok, that my final urine sample passed the exam. And no one, except my brother, told me the surgery wasn't happening on the 21st.

The communication flow has been challenging elsewhere. The surgeon didn't know I'd already had my cat scan done. The nephrologist hadn't heard I'd been cleared to move forward. No one told the hospital billing department I was a donor and they shouldn't be sending thousands of dollars worth of bills to me.

Honestly, it's all been part of the journey and I've dealt with it without much frustration. I'm learning to let go in ways I'd never imagined. Recently in class, a yoga teacher shared his experience with "hospital time" which is far different than the every day time we live in. I'm broadening that to "medical communication," in which patients aren't always part of the loop when they should be front and center.

Right now, though, I'm frustrated. Not at all of the above per se, but at having been stopped dead in my tracks with no idea when the ride's going to start up again.

I wish someone, anyone, could give me an answer. Or at least some encouragement and support.


  1. I've been reading a lot of donation stories and it seems that regardless of what hospital and what state you are in--there is miscommunication or lack of communication between the hospital and the donor/recipient. On my end it's my brother who's not getting the information.

    I think that sometimes people don't understand what it feels like to be in limbo. Having a date makes it real, you can envision an "after" and getting on with your life after the transplant. But being in limbo means more time to think and overanalyze and be scared. I understand how important it is to have a date.

    Hang in there and keep writing.

  2. LaToya - exactly. And thank you guys. xoxo

  3. I have had the same complaints and wrote about them in my blog-recently the hospital, which I do name names, if you pay attention, asked me if they could link to my blog! I laughed so hard@! I was tempted to just say yes, but I did tell her that she should read how critical I have been of the hospital...ahem...I know this will all turn out okay and maybe down the road, they will treat donors better and recipients even better than that@!

  4. There should be a donor advocate whose role it is to keep you updated. And due to privacy issues, the transplant team should never, ever discuss your results or status with the recipient, even if it's your brother. I keep thinking we've come a long way, then I read this, and it makes me mad.