Neither Robin nor I were prepared for the news Dr. Amy Tien gave us at Lahey. She simply said she is recommending me for a live donor liver transplant. She noted all the things I’ve been through since May, ordered blood tests and then had us meet with a transplant social worker to get scheduled for my two days of testing and meeting with the transplant team.
Dr.Tien told me my quality of life will be best with a live donor match and that I would need to get much sicker for a cadaver gift to be matched.
I’m scared of a 12 hour surgery. I will wake up with a machine breathing for me. I’ll have at least 4 tubes draining fluids from my liver and fun stuff like a catheter. I’ll be in the hospital at least two weeks. After that, I will have weekly blood tests. The work of therapy will begin.
As we got back into the car, tears came and I told Robin, “I don’t want my kids to have to do this.”
You can’t imagine what it is like to hear your son say, “Dad, I’ve had the sense that I would be the one from when I first heard in May.”
By Thursday of this week, I had such an ammonia buildup that I made no sense. I didn’t know if it was day or night, had no memory and couldn’t give my own telephone number. It resulted in more blood tests and a medication called Lactulose.
My sister Gloria came to babysit me Friday so Robin could get her work done. She gave me my medications and made awesome low-sodium soup. She helped me use a Kohl’s gift card and get an additional 20% plus free shipping by ordering online.
It’s strange not being able to manage the simplest tasks. You wonder if you’ve lost your mind.
Where’s my faith?
There are so many unanswered questions. If our house doesn’t sell at this price, will we lose everything and not be able to downsize. The pressure builds each day. God, why are you letting this happen?
I’m blessed and amazed by gifts, kindnesses and the way God has given us groceries. I’m blessed that disconnect notices for power and water were paid. I am amazed.
Still, spiritually, I am dry. I need the Holy Spirit to spark me. I feel like my prayers just bounce off the ceiling.
I’m tired of telling my story and do not want to be defined by my disease. Yes, everywhere I go, I have to talk about livers. I am not Scott the liver patient. I am Scott, a child of God, forgiven and free. In grace there is no guilt.
I am thankful that I am cleared with the National Transplant Assistance fund and all gifts to my transplant fund are fully tax deductible. If God moves you toward end of the year giving, please considering helping us by clicking the NTA link above and giving online.
There are numerous expenses uncovered by insurance. My approval for Social Security Disability could take months, a year or more. The NTA helps before and after transplant. (Anti-rejection drugs can be as much as $6,000 a month.)
Next week I have family coming in. I am so thankful for the 16 of us who will gather. I pray that I will stay healthy. I am thankful for every day I get with them.
If you could pray about our house selling, we have 3 more showings on Sunday.