Knowledge Is Power
Yesterday I had a great conversation with my brilliant surgeon friend whose advice I posted back in October. Every time I time I talk to him I realize how LITTLE I really know about the medical world that doctors and nurses live and breathe every day. Our conversation inspired me to send Dr. Kato (the transplant surgeon) a humongous list of questions – but not before I spent three hours researching “organ procurement” and reading (with growing horror) the details of that process.
This is a big step for me because I haven’t spent a lot of time researching the painful details of transplant. I’m a SEARCH MARKETER. Finding stuff is my job. Helping people’s stuff get found is my job. So the fact that I wasn’t actively searching for the information about a liver transplant – and not the patient information crap that’s on all the hospital web sites – but the actual INFORMATION – was me being denial. Denial of the fact that we’re here, waiting for a phone call which could at any moment change our lives once again. Denial that we’re waiting for someone to die. Denial that we’re waiting for Ana to have a second chance at life.
Research brought me some clarity and many new worries. It forced me to see the seriousness of this surgery. It’s really two surgeries because removing the organ so that it’s still healthy and viable is a crazy, precise surgical process which is prone to error.
So, back to my questions – some of them are actually my doctor friend’s questions and a couple are based on the research I did. I doubt Dr. Kato will get back to me, but who knows? I mean, I have every right to ask these questions because
If Dr. Kato responds to them, I fully intend to post his answers (with his permission). I hope he gives me permission. It’s information that may help someone in our situation in the future. Hell, it’s information that would help us grasp this whole crazy process more fully. Don’t we deserve that? Here’s what I sent him – basically I’m trying to sort out what would happen with the living donor transplant versus the cadaver donor transplant.
- Since Ana has a tumor in her portal vein, how will a living donor transplant work? Will she get healthy vein from somewhere else in her body? Will it come from me? I thought she needed the entire liver + portal vein for it to work?
- Is the living donor outcome from a parent shown to be less prone to rejection for a child (compared with a cadaver donor or living donor of a stranger?)
- If I am cleared to be the living donor, what is the next step in terms of getting the transplant scheduled?
- How does the (surgical) timing work for the living donor? Do you take my liver before you actually make the cut on Ana? Is it two separate teams? What if you find my liver isn’t viable for some reason? I’m just wondering about the timing of taking the organ from me and putting it into Ana – I want to put her through the least amount of surgery (obviously).
- For the cadaver donor – how do you know if the donor liver is viable? I mean, what if the procurement surgeons made a mistake? Do you visually assess it before transplanting or perform other tests?
- When we get an offer for the liver, will we be the only ones or do they alert multiple people in case someone doesn’t make it to the hospital in time? I mean, what if we can’t make it to the hospital for some reason (e.g., car accident, snowstorm, etc.) – we do live 3 hours away. Would that liver then go to waste?
- And, finally, is it common for the patient to get the call to come in for transplant, only to arrive, wait, get prepped, etc. and then the organ is not ultimately available for some reason?
I’m sure he was PLEASED as PUNCH to get this list of questions. Needless to say, I haven’t heard back from him yet. I did leave my cell phone number and told him to call if it was easier. What could be easier than trying to explain all the above crap to the half-crazed mother of a sick child?