If this is the first you’re reading of my living liver donor story, you can start from the beginning. After learning my cousin needed a living liver donor my husband and I decided to take the first step. This meant research and pre-screening, which I’m sharing about in this post.
Sharing a Liver 101
I started researching living liver donation the day I found out about my cousin and months later, I still haven’t stopped, honestly. In brief, what I learned from Google University was this:
- Your liver has two sides with two “branches” of bile ducts.
- It’s possible remove one side and live. The branch you keep simply gets bigger to meet the needs for your body size (in about 4 to 6 weeks!).
- If the transplant is successful, the other side of your liver, in your recipient, will also grow larger to fulfill the need for their body. Crazy, right?
- Risks for the donor range from death (estimated at 0.5%) to a minor infection or just a prolonged recovery period. Every transplant center has their own stats.
- They take your gall bladder out as part of the process, also. So there’s that.
Transplant centers don’t honestly keep very tight stats on the long term effects for the living donor, which is frustrating. However, my goal in the early days was to learn as much as I could so I could make an informed decision if it came to that.
Fun fact: The first successful living liver transplant was done in 1989.
Click here for more info from our transplant center at UCSF.
Step 1: The Health History Questionnaire
UCSF’s online questionnaire is the first step to identify potential donors. If you have a specific recipient in mind, you have to know their name and birthday. I didn’t know my cousin’s birthday, but I found it mentioned in an old google chat from 8 years ago and guessed the year from the digits in his email address. Super sleuth!
The rest of the questionnaire asked for basic lifestyle info, drug use, health history, etc. I’d later find out that many of my cousin’s friends hadn’t made it past this questionnaire. Which makes sense. My donor mentor would later tell me that UCSF is looking for reasons NOT to cut into you (do no harm). They are very picky. As they should be.
I also had to watch this 5 minute video about a donor/recipient success story from UCSF. I put it here so you can see it as well. In this video you can see Dr. Ascher who will be my surgeon and Dr. Roberts who will be my cousin’s surgeon.
After submitting the survey, we got an email. Here is the abbreviated version:
Thank you for submitting the questionnaire…. There are many steps in this process…. Two of the important steps are completing the evaluation of the recipient and then getting the authorization of your evaluation by the recipient’s insurance…. The recipient’s insurance pays for your evaluation. We will contact you once we are ready to evaluate you as a potential donor.
While you are waiting… please review this information:
- What You Need to Know about Adult Living Donor Liver Transplantation pamphlet
- Please watch the online video about living donation
- Living donation website
If you decide that living donation is not a process you would like to pursue, please feel free to contact us.
Step 2: Confirming Blood Type
On February 3rd, (the very next day) I got an email from UCSF. That was fast! I had passed the initial screening and now they wanted to confirm I was, in fact, Type O. I had a lab order to print out for LabCorp. The nearest LabCorp is an hour away in Lake Oswego. I had a feeling I’d want to record this process, so I started writing down the dates of communications with UCSF, my thoughts and prayers, etc.
We waited a few days to see if J also got the lab request before making an appointment so we could go together. His email came on the 5th. I made appointments for February 13th.
On February 8th I got up the nerve to call my cousin’s mom (I’ll refer to her as J.K.). I learned that she hadn’t heard from anyone since sending out the letters and was losing all hope of finding a donor. I’d later find out that 9 people had already been rejected as potential donors for my cousin for one reason or another. No one had made it past the blood type confirmation.
On February 13th, J and I went to LabCorp with the bubs. The lab order was for an ABO grouping and RH test. I was hoping for just a finger prick but this was a needle-in-the-arm job. We took turns holding the bubs as the young lady with the nose ring took our blood and we made small talk. This was all still a pre-screening. What would happen next?
Step 3a: Deciding who gets tested.
On February 15th, I got a call from UCSF. Both J and I looked good to move forward. The next step would involve 2 days of tests at the transplant center in San Fran. But we had to pick one person to go. Who wanted to proceed?
I asked why we had to choose one now. The transplant center would have to submit one person’s details to my cousin’s insurance company. The company would then approve to cover the costs of evaluating that person. If the first person to be evaluated wasn’t a good candidate, then the next person would have the opportunity to get tested. So, who was it going to be? My husband or me?
This is when things started to feel real. I didn’t think we’d have to pick yet. We prayed and asked our small group to pray for us. In order to decide we had to talk through some tough scenarios. What would the impact on our family be if he went through with a transplant verses me? Worst case scenario? Best case scenario? I did more research on recover times, risks, and read more donor stories.
On February 17th, I called UCSF and let them know I’d be the one coming for testing. After prayer and discussion it was obvious that it was me. I had a pull in my heart that God was nudging me forward and releasing J. I called mom again to update her. I felt better about the decision after we spoke. All we were doing was seeing if I’m even a good candidate or not. I didn’t have to decide anything else beyond that.
UCSF said they would now submit a request for approval from the insurance company. It could take a week or a month. Once approved, they schedule the tests 2 to 3 weeks out. I should be ready to book flights and a hotel.
I’ll cover the actual evaluation process in the next post. I’m going to share the link to this GoFundMe page in each post. It was set up by my cousin’s immediate family to give our broader community an opportunity help with the costs we’re facing to save his life.
His insurance covers my surgery. However, what is not covered are the expenses for our families, a minimum of a one week stay in San Francisco (flights, hotel, gas, parking, food, etc.) and similar expenses every time we return to for a mandatory check-up. I’ll share more about the financials in another post.
Thanks for reading.
If you have any questions for me or are someone who is considering becoming a living donor yourself, please feel free to contact me.