Pre-Screening

by , on
2021-07-10

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:

  1. Your liver has two sides with two “branches” of bile ducts.
  2. 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!).
  3. 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?
  4. 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.
  5. 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 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: Health History Questionnaire

UCSF’s online questionnaire is the first step to screen potential donors. If you have a specific recipient in mind, you have to know their name and birthday when you fill out the questionnaire. I didn’t know my cousin’s birthday, but I found the day and month mentioned in an old google chat from 8 years ago. I guessed the year from the digits in his email address. Super sleuth! I know I could’ve just asked but I was nervous about contacting him or his mom and getting their hopes up. Again, I didn’t know them very well.

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 for a variety of reasons. My donor mentor would later tell me that UCSF is looking for reasons NOT to cut into you (because doctors are supposed to do no harm). They are very picky which, I believe, is a good thing. They have to be as certain as medically possible that a living person who donates an organ will come out just as healthy as they were before the transplant.

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 I submitted my questionnaire, I 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:

  1. What You Need to Know about Adult Living Donor Liver Transplantation pamphlet
  2. Please watch the online video about living donation
  3. 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 my local LabCorp location. The nearest LabCorp is an hour away from me 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 my husband (who had also filled out the questionnaire) 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, Jone, the one who had written the letter. 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.

On February 13th, J and I went to LabCorp with our 1 year old son. 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 baby 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 person now. The transplant center said they would have to submit one person’s details to my cousin’s insurance company. The insurance company would then approve to cover the costs of evaluating that one 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. 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 recovery 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. 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.