Transplant Evaluation

     Day 1 of 2 for our liver transplant evaluation at Houston Methodist is complete! In case anyone was wondering, Methodist appointment days are even longer than MDA appointment days. If you have any thought of getting out of there before 1700, you better squash it and bring your pillow and a snack because you will be camped out in waiting rooms for the long haul. 

   

     Our day started off at 0730 with a Liver Evaluation Class. This class was extremely informative and helpful. We continued the day with several tests and scans to determine if Co is well enough to qualify for a transplant. The day consisted of a lot of "hurry up and wait", good thing we've become pros at that.

Some of the testing Co underwent included:

• Echocardiogram
• EKG
• Pulmonary Function Tests
• Grip Strength
• Chest X-Ray
• 21 tubes of blood
• Imaging with contrast
• PET/CT Scan
• Bone Scan

We also met with specialists including:

• Cardiologist
• Hepatologist
• Transplant Surgeon
• Nutritionist
• Social Worker
• Financial Specialist

 

     

All of this data will be factored into the decision-making process; once complete, his case will be presented to the Medical Review Board. This board will either approve or deny Cody's request to be listed. 

     The liver transplant list is based on MELD scores. MELD is Model for End-Stage Liver Disease and it estimates patients mortality risk for three months at a time. The higher the MELD score, the higher one is placed on the list. The transplant list is managed by the United Network for Organ Sharing (UNOS). UNOS is divided into 11 regions across the country. Texas falls into Region 4 along with Oklahoma. We are currently exploring other facilities within different regions that will accept Cody with his Cholangio diagnosis. Liver transplants are not curative with this type of cancer, however,  coupled with the chemo treatments positive outcomes have been identified. All this means is that some facilities will take my "out of ordinary criteria" husband in for consideration and some will not.

     Day 2 of evaluation will be next Thursday, 3/28, at Methodist. Co will complete the remaining tests and we will eagerly await their decisions. We've been burned so badly before, we are trying to not get too excited until we hear official news. In the meantime, Cody's mother, our new friend Abby (more on this incredible woman and her story to come soon), and I are working on obtaining insurance approvals, medical records and imaging while contacting different hospitals across the nation to pitch Cody's case.

     We had a followup appointment today (3/21) with Dr. Javle. He's happy with Co's bloodwork and how he's handling chemo. Dr. Javle is going to put in a request to have the MDA team review the most recent scans in hopes of having the biliary catheter removed. It appears the tumor has shrunk enough to allow the bile ducts to do their job on their own! Co is very excited about this news and it's just in time for summer! Apparently, sweat and swimming are a big no no's with a tube zigzagging its way through your insides.