Living Liver Donor Story: Waiting for Approval

At this point in the story, I’ve finished the potential liver donor tests. Now we’re waiting for approval. There have been many different waiting periods in this journey. I want to share why this waiting period was so important for me.

Waiting feels horrible.

First, let’s acknowledge that waiting sucks. You have no control and can’t do anything to move the process forward. No one likes this. My cousin’s health continued to decline. We still didn’t know yet if a transplant was possible. He was afraid to hope because he’d been getting bad news for years.

Test results starting showing up right away.

I researched each test result when it showed up in MyChart. Not that it helped much. I went over and over the notes I’d taken. 7 hours of surgery? Not being able to lift my child for over a month? How would all of this really effect my life? I didn’t want to move forward blindly, not understanding the risks, big and small, likely and unlikely.

I woke up thinking about the transplant. I went to sleep every night praying about it. For my cousin. For my family. I had been trying to wrap my mind around all of this for 2 months. It was exhausting.

Waiting was for weeding.

I need gobs of time to process stuff like this. Waiting to hear from UCSF gave me that time. Time to dig up any doubts I had or consider any regrets I might have. Time to get to the root of any fear related to the transplant.

God used this time to help me:

Evaluate my motives. Was I doing this for the wrong reasons? What are the right reasons? What if my cousin dies anyway – would that change how I feel about it?

Visualize the outcomes of potential risks. What if I died? What if I needed a new liver? What if we couldn’t have anymore kids for some reason? What if my body couldn’t absorb fat anymore? What would each of those outcomes mean for me, for my husband, our child, our future?

Sit with my fear. Considering each potential risk was like dropping a pebble into water. As the scenario played out, ripples of fear would surface. Instead of ignoring them, I tried to understand them. Why was I afraid of these things? I brought these fears to the Bible, asking God to help me see His perspective.

A visual to break up the text. You’re welcome.

Let love conquer fear. After many tear puddles and gut prayers, the ripples of fear would calm. What remained was a still confidence in God; that His love is unfailing, that He is able to do more than I ever could, and that ultimately I trust Him to take care of me and my family more than I trust myself.

From this place of stillness and peace, I can say my greatest desire is to reflect God’s love through this transplant.

Waiting boosted my confidence.

I have a giant list of things I wanted to do this year plus all the dreams for my future and family. I work hard for my health and fitness. And yet, I know I can lay all those things down if God has another plan. Working through these things made my faith stronger and me more confident than ever that this was God’s plan.

Approved to donate.

Most wouldn’t find it comforting to be labelled “unremarkable” or “as expected”, but when it comes to the condition of your innards I suppose this is a pretty good thing. As test results popped up on my online patient portal, I learned the left lobe of my liver is about 38% of the total volume. That’s the lobe I’ll get to keep. The right 62% will be all for my cousin.

A snapshot of MRI findings.

What did the tests determine? The lab work and health exam confirmed that I was in good health. The chest Xray and ultrasound gave them a closer look at my abdomen and found no abnormalities there. Whew. The Transthoracic Echo and EKG told them my heart was healthy and strong enough to withstand the surgery. Also, they tested to see if my blood clots normally.

The big questions were answered with the CT and MRI.

Do I have a large enough liver volume? They have to be able to divide it into two pieces that will still be big enough to support the donor and recipient respectively.
Are the bile ducts and veins big enough? The surgeon must attach them to the ones in the recipient. I imagine trying to stitch milk straws together. They’ve got to be big enough to make this possible.

On April 4th, I heard from UCSF. So far my test results were good but a few more were coming in. I was 1 digit below the normal range for Protein C in my blood (prevents blood clots), but that was not a cause for concern.

On April 6th they confirmed all results were in and things looked good but the official green light to be a liver donor was waiting on Dr. Roberts return from a trip.

On April 10th I got that green light. Dr. Roberts had come back early and gave me the stamp of approval. I texted my cousin and called his mom right away. They were all on the way to the hospital when they got my voicemail and cried with relief.

The dotted red line represents the incision that will be made to remove part of my liver.

Our liver transplant story will continue in the next post. In the mean time, take a look at my cousin’s GoFundMe page. It was set up to give our broader community an opportunity help with the costs we’re facing to save his life.

Please share.

Take a moment to share this story. Social media is a funny thing and often relevant content is hidden because some algorithm decides it’s not important. Liking and sharing these posts will help make sure our friends and family see the updates.

If you have any questions or are considering becoming a donor yourself, feel free to contact me. Thanks for reading!