Pancreas Transplant Consultation

MH_Blogs_Beilman_Greg_01Things are moving quickly.

After an MRCP during her last inpatient stay showed pancreatic atrophy, the timeline to start the pancreas transplant process has moved up considerably. What was once thought to be a procedure that could, and should, wait until she was older (at least 5) is now thought to be a near term necessity. There have been only a literal handful of 3 year olds who have had this surgery.

We had already been doing research on which facilities could perform the type of pancreas transplant Emme needs. Instead of a total pancreatectomy (where the pancreas is removed) she will be getting a total pancreatectomy and islet auto transplant, or TP-IAT. University of Minnesota Health has as great article called FIVE THINGS YOU SHOULD KNOW ABOUT (TP-IAT) SURGERY. The short version in laymen terms is they remove the pancreas, pull out the islet cells that product insulin, infuse them into the liver. The liver then hosts the islets which essentially tricks the liver into producing insulin like the pancreas. While Emily would have to take pancreatic enzymes (something she has done before without much luck) her chances of being Type 1 diabetic are only about 20%.

The two facilities that are on the top of the list to perform the TP-IAT are in Minneapolis and Pittsburgh. We are working with our specialists to determine the best facility for Emily.

So as you can tell we could use some help. Prayers, good vibes, thoughts and well-wishes help us pay the mental bills more than you can imagine. We are very thankful for the support our family has received during this process. But at the end of the day financial help is our big need right now. With that in mind we have setup a fundraiser. Even if you can’t provide monetary support, sharing the donation page or Emily’s story would mean the world to us. We constantly get asked how people can help and now we are in a place where we are finally asking for it.

More to come on the consultation trip as we decide which facility best fits the needs of our brave warrior princess.

Trackbacks & Pings

  • They Said Yes to the WES - Emme Jo :

    […] whole exome sequencing means so much more than just the opportunity to move forward with the TP-IAT procedure. For the entirety of Emily’s life we haven’t had a solid diagnosis on her underlying […]

    4 years ago

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