How My Son Got A New Liver: Transplant Protocol 101 (and other stuff)





Transplant Protocol 101 (and other stuff)

So Pip, who had just turned 4 months old, needed to be listed for transplant.

In order to receive a transplant, you have to first be listed by UNOS (the United Network of Organ Sharing.)   Your physician sends in your most recent lab work and other proof of your need for a transplant and the UNOS committee determines your ranking on the list.  For children who need a liver transplant, the ranking is called a PELD score.  That stands for Pediatric End-Stage Liver Disease score.  The patient receives a score ranging from a negative score (not sure of the exact bottom number ...if there is a bottom number) to 40 and the score basically represents the likelihood that you will die within the next 3 months unless you have a transplant.  A low score means you are not likely to die within three months.  A high score means you really better get an organ tout de suite.  Status 1A and 1B are reserved for people with PELD scores of higher than 40 who need to be at the tip-top of the list because they are expected to die within days without a new liver.

So, they need the info from your docs AND they need proof that your insurance will cover it OR, if you have no insurance coverage for transplant, you must have proof that you have liquid assets enough to pay out-of-pocket.  Pip’s transplant cost around ¾ of a million dollars.  He’s pretty much literally our million-dollar baby.  Since most people aren’t that liquid, insurance is really important.  Without it, you cannot be on the list and unless you are on the list, you cannot receive a transplant – even if you have a live donor lined who is willing to give you an organ (or, in the case of liver transplant, a piece of an organ.)  I’m not gonna get too political right now, but it’s info to keep in mind as we continue the health insurance debate in this country.

Pip’s hepatologist felt that he would list very low – in the negative numbers.  His guesstimate was that Pip would really start to fail at around 14 months of age or so because his liver was still partially functioning normally.  The only area where he was in trouble was that he wasn’t able to properly digest his food and get nourishment.  So the thought was that at some point we would see his weight gain plateau and he’d begin losing weight and strength and we would know that it would be time to accept an organ offer or do a living-donor transplant.

The elements of liver function I actually understand…ish
The liver is responsible for a lot of different stuff that goes on in your body so sometimes, when it’s sick, it is carrying out some of its functions just fine and some others not at all.  In Pip’s case, his liver was making bile but was not allowing it to drain into the small intestine where it would break down the food and aid his body in processing it into usable stuff.  But, the liver also synthesizes albumin which is the main protein in your blood and keeps the liquid part of your blood from seeping through your veins and into the empty spaces between your organs (your “third spaces.”)  It is also responsible for synthesizing the clotting factor in your blood.  Pip's liver was doing that stuff just fine.  It does other stuff I don’t understand. Actually, according to Wikipedia, it is thought to have over 500 separate functions.  I’m pretty sure two of them are storage of 80’s song lyrics and names of fancy cheeses cause, I gotta tell you, Pip was rubbish at remembering any of that stuff.
Liver function out

Pip's dad and I were both considered potential donors for Pip as my ex-husband is a blood match with Pip and I am a universal donor.  That was quite a relief because it gave us a lot of hope that we would never have to wait around and watch him suffer – or possibly lose him while waiting for a cadaveric organ.  His doctors would prefer a cadaveric donor of comparable size but the decision to move forward with living donor would be ours if we felt Pip was suffering.

After Pip was first diagnosed, we learned that being a donor match for liver is a little easier than with other organs.  The two key components are blood-type and size but we didn’t have to worry about being a tissue match or anything.  When we were in the hospital with Pip right after diagnosis and looking for the ways in which the glass might be half-full instead of half-empty, we decided we were super lucky that Pip needed a liver instead of a different organ.

I said to his nurse, “So, I guess if you need a transplant, it’s best if it’s a liver because it’s easier to match, right?”

She said, “Oh!  The liver is so fascinating.  I just love it.  Its function is so varied and complex – we have no way of duplicating liver function medically.  So, if your heart fails, we can pump it for you for a while – give you a Berlin heart.  If your lungs fail, we can put you on a vent. You can be on dialysis indefinitely for your kidneys.   But if your liver fails, there’s nothing we can do.  That’s it.  But…yeah…it’s a little bit easier to match.”

OK…ummm…..TMI, there.  But thanks for sharing.  I’ll just be over here in the corner…in a fetal position…rocking back and forth.

So the plan was two days of procedural junk to get him listed for transplant after which (but no big rush cause he was really in pretty good shape according to his specialists) one of us would be tested to see if we were a match for Pip.

There were so many meetings and different people to coordinate with that, because they are busy people with full schedules, the two days were scheduled for end of November and beginning of December.   And then, from there, we would wait some more for Pip to stop growing and start getting weaker.

That was the plan.

Apparently nobody bothered to explain the plan to Pip.






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