So Dr. Kato finally called me today, fully prepared (possibly resigned) to answer the many questions I emailed him the other day. It was actually a pretty amazing conversation. Let me recap.
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 the transplant to work?
Dr. Kato said that a cadaver donor with a WHOLE liver is preferred exactly because of this issue [this is the first I’d heard that Ana could possibly get a partial liver from a cadaver]. However, if he uses a partial liver for transplant (whether it’s mine or someone else’s) and he finds he needs more vein, he will most likely take it from her neck. This inspired a new question.
What kind of scar will that be…on her neck?
It’s a minimal scar. It will not be very significant [this was total surgeon-speak – I’m still worried about the scar.]
Is a living donor organ from a parent shown to be less prone to rejection for a child (compared with a cadaver donor or living donor of a stranger?) I also asked about matching – do I just need to be the same blood type to be her match, or do other things (like tissue) need to match?
Dr. Kato said it’s pretty much just blood type that needs to match.
The chances of rejection whether from a parent donor or cadaver donor are very low, HOWEVER, rejection is even lower if the donor is a parent. Dr. Kato then said (again) that he favors an entire liver from a cadaver donor because of the nature of Ana’s illness and the tumor’s involvement with the vein. In layman’s terms, he feels that, overall, a whole liver with all its bits and pieces [I’m paraphrasing] will produce a better outcome for Ana. He also explained that a partial transplant is a more complex surgery [I have a feeling this was a gross oversimplification.]
Speaking of scars, I asked about the incision for the transplant and whether Dr. Kato would use sutures or staples (a friend of mine advised against staples because her husband had liver surgery and they used staples which ended up producing a very large, very visible scar).
Dr. Kato said that he prefers sutures, but safety is the top priority – and staples speed up the process. He will most likely use sutures. He also explained that he has a special technique he uses on teenagers which greatly minimizes the visibility of the scar, and said he would use this approach on Ana even though she’s not a teen. He said that his patients are very happy with the outcome. He then warned me that sometimes complications arise that can produce more pronounced scarring (like infection), but that this is rare and he felt that Ana should do very well.
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?
There is a procurement team involved with removing the organs from the donor and most of the time one of the the team members is from Dr. Kato’s team [so they are present to assess the organ]. Sometimes they accept the offer based on a local surgeon’s judgement and sometimes they wait to see the organ. In answer to the question, “How do you know the organ is viable?” Dr. Kato said there aren’t really any tests they perform (e.g., a biopsy) – it’s all based on the surgeon’s opinion and only experienced transplant surgeons can make the call.
That lead me to ask, “Are you saying you eyeball the liver and basically make the call whether it’s viable or not? Like an expert mechanic listening to an engine?”
And he said, “Yes!”
And I said, “That’s kind of incredible.”
And he said, “Yes, it is!”
Next question. 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?
That is a very unlikely scenario because there’s generally about a 12 hour window before the patient goes to surgery and we will be notified WELL in advance of the procedure, and likely be waiting around at the hospital. If there is ever a case where there are only three hours to get to the hospital, we would likely not get the call.
Okay, so what if the situation was reversed and we made it to the hospital because we got the call. How likely is it that the transplant would not happen due to the liver not being viable or something unforeseen (e.g., nurse Slippery Fingers drops it on the floor)?
This was such an interesting response! Dr. Kato said that for children, it’s very rare that this happens but it does happen. [I then asked him to give me a percentage – e.g., what percentage of kids get prepped and ready, only to be sent home?]. He said for children, it’s about 1 in 5 to 1 in 10 which is actually a big swing when you’re talking about percentages (20% versus 10%). For adults it’s much higher than that – 30 to 50% will come to the hospital and NOT get the transplant. They may get called 2 – 3 times. This is because they are a lot more selective with livers for pediatric patients in terms of getting a perfect match and the right age (up to late 40’s is what he’s comfortable with.) With adults, where there is more competition and a shortage of livers, they can’t be so picky so they may need to transplant a less than optimal organ.
So, my final question – why is this taking so long? Dr. Martinez and Dr. Hochberg both said they were surprised (even shocked) that we haven’t gotten an offer yet. Is Ana listed correctly? Did someone mess up the database?
Dr. Kato said we have gotten offers but they have not been suitable, for one reason or other – most likely due to the age of the organ or that it was only a partial organ, rather than a whole liver. [Jim and I were astounded by this news and I also found it slightly encouraging. I definitely want Ana’s surgeon to be picky.]
And that’s pretty much everything.