Friday, February 18, 2011

what keeps me sane

I've started a new project folks, and a new blog to go with it. My first post, which went up today is about one of the ways I hold it together in this transplant (not to mention the rest of my life) craziness:


Thursday, February 17, 2011

The Kidney and Goliath

My tests are done. My pee is clean. My blood is clear. My mental state had been deemed stable. My kidneys work really well. 

I am healthy and ready for surgery. 

But we don't have a date set yet. 

My brother's insurance company won't pay for the transplant at the hospital he's been going to.  The doctor is covered. The tests we've both been having have been covered. He's had procedures done there that have been covered. 

But not this. 

Shouldn't someone have realized this before? Before we went through all this testing, planning, wondering? I've been telling my kids about the fancy bakery downstairs they can stop in when they come to visit. I've mastered the subway ride. I know the security guys downstairs, the people in the lab, I found a great yarn store down the block. 

And now? 

I don't know. Nobody knows. I feel like I'm on a roller coaster that got stuck mid-ride. Something huge is bound to happen but I have no idea when. There was such momentum and now . . . nothing. 

Nothing but paperwork and negotiations and alternative options. Maybe we'll get special dispensation to stay at this hospital. Maybe we'll have to start over somewhere else. All I know is that my brother needs a kidney soon. That the chest catheter he's using for dialysis is nothing but a short term solution. That I'm confronting major elective surgery myself but none of this really matters.  It's all about contracts. And money. 

Not health. Not quality of life. Not the emotional strain for either of us with this frustrating roadblock thrown into the already challenging road. 

We are an anonymous case on someone's desk somewhere. Waiting for people who don't know us to make monumental decisions about our health and care. And we have no say. 

But I have something to say. This sucks. I hate that we're at the mercy of a conglomerate. I hate that we have no voice, no choice, no hand. I hate that all there is to do right now is wait.

I haven't found the silver cloud in this yet. If anyone sees it, please let me know. 

Tuesday, February 15, 2011

cleared for take off

I just got back from the lab - I had to drop off two big jugs of pee from my second 24 hour test (seems they forgot to check something out the first time). I also needed to leave urine sample number 5. This was the first time someone in the lab gave explicit instructions on what to do. I'm relatively certain, at this point, should I have had that information at the beginning, 4 out of the 5 tests wouldn't have been necessary. 

Who knows. 

And, to my surprise, I had more blood drawn. Just one vial, for clearance. 

I am now done with testing (should all today's stuff come back ok). Done until a week before surgery when they do an EKG and chest x-ray and I'd assume take more blood. 

Amazingly, I've found very little  of this aggravating. Well, except for the unnecessary cancer panic after red blood cells were found in my urine. Oh, and when someone shared test results with my brother that I didn't want him to know about. But all the trips uptown to the lab, the bruises on my arms, the many times I've been poked with needles, the chronic challenge of peeing neatly in a cup (I will never excel at this ) were all ok. 

It's all part of this journey, which I'm finding is a lot like life in general - disorganized, full of contradictions, where nothing can be taken for granted. Even now, cleared for surgery, we don't know if my kidney will fit in its new home. 

As I was heading down Riverside Drive on the way home from the lab, I wondered if my brother couldn't use my kidney, if I should go through with the surgery and give it to someone else who could use it. 

And then I thought: what the fuck?

And then thought: maybe. 

I've gone through all the testing, I've jumped through hoops for months. I know I'm healthy and I've got a kidney that could make a difference. If not my brother then should I just throw in the towel and walk away?

Perhaps it's just that I'm overtired and need more sleep. 

Or maybe, my heart is growing. 

I'm not sure which way the wind is blown on this. Yet.