Inigo Montoya: “I promise I will not kill you until you reach the top.”
Man in Black: “That’s VERY comforting, but I’m afraid you’ll just have to wait.”
Inigo Montoya: “I hate waiting.”
–(The Princess Bride)
I think I annoyed Dr. Kato with my incessant questions today. I was trying to understand if he felt a PARTIAL liver from a cadaver donor was preferred (or not) over a partial liver from a living donor. The reason this question came up at all is because somewhere along the way I’ve misinterpreted a couple of things.
First of all, I thought that Dr. Kato said he would want to take the right lobe of my liver, which was incorrect. He never said this and, in fact, the left lobe is generally preferred for children because it’s smaller and they’re smaller. It’s also easier on the donor to remove the left lobe. I have no idea how I got it into my head that he wanted the right lobe of my liver.
I also thought Dr. Kato didn’t want to use a partial liver from a cadaver at all – it was either a full cadaver liver or my liver or nuthin’. I think I jumped to this conclusion based on he fact that he said he’d gotten offers for livers, but none of them were suitable because of the age, or because he preferred a whole liver. So I guess I thought he was turning away partial livers from cadaver donors because they couldn’t be used – but that’s not the case. They probably had other issues (e.g., too old, not the right lobe, etc.) This whole thing is so nuanced and complicated. Ultimately, Dr. Kato said a partial cadaver liver from a local, young donor is preferred over my liver, but a WHOLE liver is his top preference. In response to this, I sent him the following email (this is unedited):
Thank you. This begs the question (I’m sorry)… why am I getting screened at all if even a partial cadaver donor is preferred for Ana? Is it because we haven’t even gotten an offer for a partial liver that meets the criteria you’re looking for (local, young etc.)? If you got an offer for a partial organ like this (at this point) would you accept it, based on the length of time that Ana has been waiting? Is it too much to also ask exactly what you’re looking for if it’s a cadaver partial liver? I’m really just trying to understand this whole process and why it’s taking so long, and how long we should wait before I become the donor. I feel like I’m groping in the dark.
And Dr. Kato’s response (remember: he’d already emailed me several times within a 24-hour period):
First of all, please make no mistake on the priority. Our priority is to give the best chance for Ana the fastest recovery and to beat the tumor. It is not to do a transplant fast. Anxiety level always goes up with waiting. Please be patient. We are looking to find the best possible organ in the shortest time (not just to find it in the shortest time).
There are so many things to assess in determining organ donor quality and safety. Please leave it up to us. We will present to you as much as we are allowed to do at the time of organ offer (some donor information is confidential). Having living donor back up is always good, also there may be a chance of less rejection in living donor organ from one of the parents (not proven, only suggestive data). In Ana’s case, full size deceased donor, partial deceased donor, living donor even there maybe unknown immunological benefit with living donor. Since waiting time is so unpredictable, we recommend to have living donor option as a back up plan.
Please be patient?? Is he kidding me? I’m a crazy person. He has no idea who he’s dealing with. I HATE waiting. I MUST KNOW! This was my response to his response:
I understand. I know your top priority is to have the best outcome for Ana.
That said, it is difficult for me, as a parent, to leave everything up to you. That’s just the truth – it’s not a criticism of anything you’re doing. I know your reputation is flawless. I know Columbia is an excellent hospital.
But Ana is 11 and she’s scared, and we can SEE this thing sticking out. Every week that we wait I worry. Will it spread? Will she get sicker? Will her liver fail? Is she going to survive? It’s like watching your child hurl towards the edge of a cliff, and being completely unable to stop them.
The other thing is this – I want to be there at her bedside after transplant. If I’m her donor, I can’t be there. And that’s ultimately why I wanted to know what your preference was in terms of partial living or partial cadaver donor. But I want to be perfectly clear that if I am approved to be her donor, I want to schedule the transplant as soon as possible.
Not surprisingly, I didn’t get any further response from Dr. Kato. However, I had copied Dr. Hochberg (Ana’s oncologist from Westchester) to keep her in the loop and her response was, “Sounds like you are in good hands. We won’t let her fall off the cliff. I promise.”
Did I mention waiting sucks?