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7/2/2017 Latest post:
I don't remember when mom was diagnosed with NASH (nonalcoholic steatohepatitis). She told us it was a fatty liver disease and she needed to loose weight but it wasn't a big deal. I knew she had lots of drs and was a part of a study or two in Dallas. But, I can tell you the exact day I decided this was real and was going to change our lives forever, one way or another. I'm a teacher and tend to get so wrapped up in my work that I put everything else on the back burner until holidays or summer vacation. It was after a good run with our one-act play that dad said, "I know you have been real busy with school and I'm proud of how well the play did, but your mom really isn't doing well and this could be bad, real bad. " I remember laying on her bed as I listened to her gasp for breath in-between the list of things she wanted me to remember when she was gone. "The picture above the bed in your sisters room is your dad's mom and dad, the one by your dad's bed is my daddy....) Shortly after that day, dad took her to Denton to have a paracentesis done. (Draining fluid from her abdomen) 6.1 liters! That was the day Dr. Aurora started the process of getting her on the national liver transplant list. We started going to have a paracentesis done once a week. We went to Dallas 2 days back to back full of blood work, tests, meetings, classes and drs visits. On mother's day 2017 we took her to the ER in Denton. She was literally dying. Dr Aurora said, "I'm not going to lie, she is bad, really bad, but we are going to do the best we can." And they did! After 21/2 days mom was transfered to SWUT In Dallas. She stayed there for another 21/2 days. By this time mom was officially on "the list"! Her MELD score was up to a 28. (MELD stands for Model for End-Stage Liver Disease. It is a number from 6-40 that gives indication life expectancy without a transplant. ) Our transplant coordinator said to be ready, in the area 20-25 MELDs were receiving transplants. They revaluate the blood work weekly when it reaches this level. When they do that the MELD score can go up (if the patient is sicker) or down (if the patient is doing a little better). Mom's MELD dropped to a 24 but didn't stay there for long. A week later at our next appointment in Dallas she was admitted to the hospital with a MELD of 26. She stayed another week there. What is maddening is that during this time one very important drug was $2400 for one month supply and the insurance would not touch it no matter what form we sent or who we talked to. However in the hospital she got it. The next week she was again admitted to the hospital, with a MELD of 29. Her kidneys were sick and tired of doing the livers job as well as theirs and were on strike! While in the hospital mom's MELD changed daily. After it hit 36, they stopped telling us what it was. We saw more drs and did more tests. From mom's room we could see the helicopters come in and leave. We would say, " I wonder if that's your liver?" I'd go to a sleep every night thinking "I hope tonight is the night, they come to tell us, they found mom a liver." Or "maybe tonight dad will call to tell me mom's liver is on the way." It happened on June 29 at about 11:30 am. After they took mom to her first dialysis, I went to grab lunch. When I came back the nurse asked if I had heard. ??? She was smiling and excited so I got a little knot in my throat! "The drs have found a donor. They won't know for sure until the liver gets here but it looks like your mom has a new liver!" I decided to wait to tell anyone until we had more information. About 1 and 1/2 hours later a dr ce by. I told him mom was in dialysis. He then introduced himself as the surgeon who would be performing the transplant. I asked, " the transplant, as in today?" He replied with well yes tonight. That started it all. I texted Kent and Andrea and called dad. I was so excited to be the one there when it happened even if it wasn't as dramatic as it was in my dreams. Mom had a surgical scrub at 6:10 that afternoon. Kent, Gideon and Andrea all got there before they took her to pre-op. We moved house down to the 2nd floor and started the long night. 1st call came at 9:45- the surgery was starting. Dad arrived. 2nd call-11:20- the old liver is out. 3rd call-2:20- still working, mom is doing good. Surgery ended at 3:45. Dr. Parekh came out to talk to us. Andrea and Gideon were the only ones there. We had gone to move cars around and try to eliminate some of our things. He said they had to pause surgery at one point because she had a blood clot close to her heart. They had to wait while the blood thinner worked. Other than that things went well. The next 24 hours would be crucial.