Monday, April 25, 2011

you can't make this shit up

I'd been writing this morning, about how, knowing our track record so far, we wouldn't get any news today. That even though my brother's liver biopsy was fine, and the two liver tests before that were fine, and the hematologist gave an ok before that and that this was the absolute, very last hurdle he needed to get past before we'd get a new date, most likely, we'd be left hanging.

I was wrong.

He got news.

But not the news we were hoping for.

They want him to see another specialist.

Yes, yet another specialist.

Someone they hadn't mentioned before. An expert in infectious diseases.

Seriously, what the fuck.

Nope. That didn't do it. I don't think anyone can begin to grasp the enormity of what I'm feeling:


Couldn't this have been brought up during the past month plus we've been waiting for all these results to come in? If there was something they thought was still an issue, why wasn't anything mentioned before now? How come, after he's been told over and over that each hoop he'd gone through was the very last one, there's always another?

This goes so far beyond the frustration of waiting it's almost indescribable.

This is agony. This is grossly unfair. This is insane, ridiculous, bordering on cruel. I get the whole no stone left unturned thing. Truly, I do. Making as absolutely sure as possible, before taking on something as huge as a transplant, that everything is in order is responsible and I'm all for that. This is a life on the line. Two, if we throw mine into the mix. But shit, did it really need to be dragged on this long?

Shouldn't this liver thing have been looked into before a donor even entered the picture? Couldn't any of these additional avenues been examined simultaneously? Why wasn't anyone laying out the big picture for the patients involved?

We are people. With feelings, expectations, fears, anxiety (ok, when it comes to the neurotic stuff I'm mostly talking about me). One of us is living on hold, the other one is getting progressively sicker.

We're not just cases at weekly round table discussions. Not just organs that work and that don't. Not just bodies to slice open and reorganize.

These are lives that are being lived in a strange, impossible to explain vacuum. My brother and I are facing life changing surgery, living with hopes beyond hopes that all will work, grappling with the reality that all might not. We have relatives and friends who are worried, concerned, stressed. Living with this huge unknown hanging over everything is getting progressively harder the longer it goes on.


I don't even care about how I feel anymore. I just want my brother to be better and it can't happen soon enough.

Only now yet another wrench has been thrown into our mix.


  1. Elissa - As a recipient I want to thank you upfront for making this decision to donate to your brother. Its a huge decision, a voluntary decision that will be with you forever. I have been living with my transplant for almost 15 years. Doing very well, I had my ups and downs and what I learned is this.... Doctors are doing their best to ensure that your brother can have a successful transplant and go back to a normal life. There are so many things that can happen over the years, and if they can be sure that they crossed their T's and dotted their i's to the best of their ability - they did their job. The hardest part of the process is the prep before.. It's mentally taxing on the donor and mentally/physically for the recipient. Please. Hang in there. Dont make this harder than it is.. If things dont work out, know that it couldn't happen. Dont you want the best outcome? Dont you want to see your brother thrive? And know this.... once the surgery is done. Its all up to him to keep it going. A lifetime of meds, never missing a beat. Communicating with the doctors everytime something doesn't feel right (even a headache) or puking from bad food..You will do your part - the rest is up to him. Barring any random illnesses. Hang in there and stay postive for all the others that want to give the gift of life and for your brother - this is not an easy thing for him either.

  2. Thank you so much for those words of wisdom. I know everyone's doing everything they can to make sure all's been checked as best as possible and I'm grateful for the concern and how thorough it's been. At this point it's the lack of communication that's been getting to both of us—it's been a rough few weeks. But, yes, in the end all that's really important is we get there and he feels better.