So I spoke with one of the surgeons from Pittsburgh tonight.  They want us to entertain the idea of a Hepatocyte Transplant.  This is where surgeons would inject liver cells from a healthy donor liver into Isabella's liver, in the hopes that they would sort of take over a bit of the function of the liver.  Apparently this has been successful...in monkeys and rats.  Well, that is not true.  There is new, unpublished research that apparently shows success in humans.  I am a bit unclear about how many, but let's just say that this is new information to the Pittsburgh surgeons as of about the past month.
There are pros and cons.  The pros are that it could potentially be curative, but most likely it sounds like it would function more as a bridge to the transplant.  It would also be furthering the research if Bella was to participate.  My concerns are that, if the cure may not be permanent, how do we monitor Bella closely to ensure that her UCD symptoms don't recurr?  If she has a full transplant that cures her liver, the things we have to look out for are rejection-related.  If she rejects the hepatocyte transplant, it sounds to me that we have to look out for rejection, but also for recurrence of her hyperammonemia.
I know that Bella's doctors are doing their best to keep us well informed so that we can make the best possible decisions regarding her health, but I feel like I need a medical degree to be able to make these decisions.  Dr. Soltyz and the the doctor who specializes in the hepatocyte transplants are going to be sending me more documentation about the research, but I am hoping we will be able to understand the literature.  I guess we will have to call Elle for our personalized expert opinion!
On another note, Nancy is organizing a Calcutta to benefit the fund we are starting to help us offset the costs associated with Bella's transplant.  She is doing an amazing job organizing and networking, and I am sure the night is going to be a blast.  It has been hard for Steve and I to get to the place where we recognize and admit that we can't do this alone.  We are incredibly lucky to have most of the medical costs associated with the transplant covered (yeah for Vermont health insurance!), but we know that there will be a lot more expenses.  It is almost like we will be running two households for the time that Bella and I are in Pittsburg, and I still don't know if I will receive any paid leave.  In the worst case scenario I will be unpaid and we will have to pay our health insurance premiums out of pocket.  That is very expensive, but we obviously can't lose our coverage.
So, Nancy has taken charge, thank God.  She has taken on this new challenge with the energy that she puts into everything, from quilts to handbags to caring for Steve, so I know she is the perfect volunteer.  If any of you know her parties, past or presesnt, you know the Calcutta will be a blast.  Boyden Farms has also offered us the use of their barn for an event (thank you Laurie!), so we hope to do another fun-raiser there in another couple of months.  We are definitely not "can on the counter" ready, but we love a good party as much as anyone else!
Oh, Bella's surgeon also said that he feels she will have a donor liver within the next three months.  That gives us a clearer picture of when this will happen.  I don't know if that sounds like forever from now, or if it is way too soon.  Either way, we are doing our best to prepare ourselves, Bella and the girls.  We remain confident that this is Isabella's best option, and we have complete faith in the wonderful team at Pittsburgh.