In this post I talk about my donor mentor a bit and share what my donor evaluation process was like at UCSF – in other words, all the tests that were done back in March. But first, a little review of my living liver donor story so far.
- Feb 2nd I found out my cousin needed a liver [read more about that] and we decided to see if we could donate by filling out a questionnaire from UCSF.
- Feb 3rd, UCSF asked me to take the next step and confirm blood type.
- Feb 13th we got blood drawn at a local lab [read more about that here].
- Feb 15th UCSF said we both looked good and asked who wanted to take the next step for tests, me or my husband.
- Feb 17th, I chose to move forward with the process. UCSF submitted a request to my cousin’s insurance company to approve my tests.
Things moved pretty quick in the beginning. So that brings us to the next chapter of the story: going to UCSF for all the tests.
Finding a Donor Mentor
At this point I wanted to talk to someone who had gone through this process before. On February 18th I reached out to Jon Aplin. I had come across his liver donation story as I scourged the interwebs for info. I was struck by the fact that he was a believer, that their transplant took place at UCSF, and that he gave out his email address for anyone to contact him. It was like God gift-wrapped him!
Jon and I had a long and helpful phone conversation. His faith-based perspective, guidance on helping family members who were scared, what recovery after surgery was like…it was everything I needed to hear.Love is stronger than fear. Follow Tiffany's journey to be a living organ donor. Click To Tweet
His theme verse through his transplant was John 15:13. Christ is the ultimate example of selfless, sacrificial love. You can’t be a living donor with a focus on yourself or wanting to be a hero. This is all about my cousin and his best shot at life and health. When I am focused on that, I am not afraid. Love is stronger than fear.
Step 3b: All the tests.
Previously I said Step 1 was filling out the questionnaire and Step 2 was the blood type confirmation. Step 3a was J and I deciding who would get tested. We told UCSF that I would move forward on Feb 17th. It wasn’t until March 2nd that the insurance company authorized my testing and we were able to schedule the appointments.
On March 10th I was woken from a nap by an automated call from “Emmi”? This is an online educational service UCSF uses to show patients what to expect and how to prepare for certain tests. I got to watch the MRI and CT Scan videos.
On March 20th I got a PPD test (tuberculosis screening) done locally. I did have to pay for that myself. I also had to send in my most recent Pap results.
On March 23rd I was at UCSF for a full day of tests. Normally it’s a two day thing. However, because I’m out of state, they tried to schedule all my tests on the same day; a great idea in theory but it got a little wonky real fast.
One Day Evaluation Schedule
7:30 AM – Consent for Evaluation
I met with a donor coordinator to fill out all the consent forms. This was at the Connie Frank center on the 7th floor and all was quiet as they weren’t technically open for the day yet. Unfortunately this took longer than expected so I was already behind schedule.
Drop-in Lab Work
I immediately went down to the 1st floor lab for blood (15 vials) and urine samples. Even with the “fast pass” ticket they gave me, it took a while to get started. They have to redo the Blood Typing and do it twice, with two different phlebotomists, and at least 15 minutes apart. Don’t want anyone cheating their blood type test. Once everything but that 2nd blood type test was done (and because I was running late) they said I could go to my next appointment and then come back for that last draw afterward. I love how flexible they were.
9:19 AM – Abdominal Ultrasound
I went to the 3rd floor, checked in and was informed that I was 4 minutes late for my appointment. Yikes! When they found out I was a potential donor, my tardiness was suddenly forgotten and I was given a lot of grace. This was a very different experience than my prenatal ultrasounds. I had to shift around so the tech could get up under my rib cage and get a good look at my liver from all angles. Of course she couldn’t tell me if things looked good but at least she confirmed all my organs were present and accounted for.
Back to the Lab and then food!
I waved down the guy I saw before and he found someone to do my last blood draw. I felt like I was cutting the line and sneaking back in. It was kind of awkward. With that done I was able to go eat for the first time since 10PM the night before. It was my one chance to eat that day as I’d have to fast again before the MRI.
11:00 AM – Social Worker Meeting
Back on the 7th floor, I met with Sandy for about an hour. She is my advocate, making sure I understand my rights, know my resources, and am not being coerced. She explained I could back out at any time, even the morning of the surgery, and they’d help me “save face” by giving a medical reason I was no longer able to proceed. She was also looking for mental and emotional stability, making sure I have the necessary support I will need before, during and after at home. She gave me the applications for the National Living Donor Assistance Program.
12:00 PM – Physical and Health History
I was still breastfeeding at the time and desperately had to pump. So before the Nurse Practitioner came in I was able to do that – but I made a horrible mess and got milk all over myself. No crying, though. The appointment was pretty basic; vitals, reflexes, health questions, etc. The NP was very easy to talk with.
After this appointment I waited in the lobby to get my After Visit Summary. This is when I noticed a big uh-oh. My summary included future appointments and it showed my CT scan as being scheduled for the following day. Not today. But I was leaving the next morning! This was a big scheduling snafu, but I didn’t panic yet.
Drop-in Chest X-Ray and maybe EKG?
I now had about 30 minutes to get these two tests done before my next appointment. Not possible. The X-Ray on the 3rd floor was quick and about what you’d expect. I stood wearing the heavy apron and was rotated a few different ways for each x-ray. The EKG was on the 5th floor, and hey…it was the same location as my next appointment, but I was out of time.
2:00 PM – Transthoracic Echo & THEN the EKG
When I got to the 5th floor I explained I had to do both the Echocardiogram and the EKG. They let me do the Echo first and the EKG right after. No problems. The Echo, an ultrasound of my heart, was pretty nuts to see. My heart valve opening and closing looked like the flippery foot of a Who from Whoville slapping up and down. I had to be undressed on my upper half with sticky electrode patches stuck here and there. But I was given a towel for modesty once the patches were in place.
The EKG was the most awkward test but the fastest. The tech (a woman) just had me undress while she was still in the room and placed 10 sticky patches on me (arms, legs, and a bunch around my heart and chest). Then she attached alligator clips that looked like mini jumper cable clamps to them (no modesty towel), got her printout and I was on my way.
3:45 PM – Abdominal CT Scan or not?
This is the appointment that was scheduled for the wrong day. I showed up early though, and was optimistic it would work out. I was now in a different building than I had been in all day (across the street and in a basement). When I arrived they simply told me they did not have an appointment for me. Sorry. They said I was probably supposed to go to the OTHER radiology department…which is where my MRI was anyway. Truth was the appointment was scheduled for the next day but she didn’t notice that. Oh well. Off I went.
3:55 PM – CT & MRCP of the Abdomen
In yet another building (main hospital’s radiology department) I explained the situation to the nurses. They (of course) did not have me scheduled for a CT scan but asked if I was a potential donor. One gal picked up the phone and asked the person on the other end, “We have a living organ donor here who needs a CT Scan. Can you fit her in?” Apparently yes, you can just fit someone in for a CT scan. Just like that.
Doing the CT and MRI in the same location was great because both require a peripheral IV for the contrast or dye they inject into your blood stream. Once the IV port was in my arm, I didn’t have to go walking from building to building with it.
The CT Scan was first and was as expected. I had one last year. However, the MRI was an interesting new experience. Those machines make crazy noises. Part way through the MRI (which takes a lot longer, btw) I noticed a few itchy spots and told the tech. He looked at them and sure enough there was one super tiny hive on my forearm. And then it got wild.
Because ANY reaction to contrast, even one tiny hive, could indicate something more serious, we had to stop everything. Nurses and then a doctor came in and they all looked at the hive and asked me questions and checked me out and we waited to see if it was getting worse. Once they were all satisfied it wasn’t, we finished the MRI and I was able to get that IV out, get dressed and finish all the tests at 5:30 PM that day. And went straight to dinner.
Tests done. Now what?
All my test results were to be reviewed in detail by Dr. Roberts, Chief of Transplant Service. If deemed suitable, they would contact me to arrange a surgery date. So really, the woeful waiting and wondering period began.
The next day I went to Modesto to visit my cousin in the hospital. First time I’d seen him in 10 years. This is when I learned that many of his friends were not found to be a suitable donor. That he had been surprised my selection process was moving so fast. I felt that to be a great confirmation that God intended I be the one to do this for him, and I told him as much.
My living liver donor story will continue in the next post. In the mean time, please take a look at my cousin’s GoFundMe page. It was set up by his immediate family to give our broader community an opportunity help with the costs we’re facing to save his life.
If you don’t mind taking a moment to share my story, I’d appreciate it. Social media is a funny thing and often relevant content is hidden from friends and family because some algorithm decides it’s not what they want to see. Liking and sharing these posts will help make sure our friends know what’s going on.
If you have any questions for me or are someone who is considering becoming a living donor yourself, please feel free to contact me. Thanks for reading.