Okay, where are we at in the story? Here’s a little timeline recap:
UCSF submitted a request to my cousin’s insurance company to approve my tests. I’ll talk about that process in this post. But, while I waited to hear from UCSF and schedule the tests, I looked for a donor mentor.
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 advice on helping family members who were scared and sharing what recovery after surgery was like…it was everything I needed to hear. His theme verse through his transplant was John 15:13: Greater love has no one than this: to lay down one’s life for one’s friends.
Jon’s approach to being a living donor was to center his recipient and de-center himself. You can’t be focused on yourself or want to be a hero, he explained. It’s all about your recipient and giving them their best shot at life. When you focus on that, the fear subsides. Love is stronger than fear. And while
Previously I wrote that Step 3a was J and I deciding who would get tested. We told UCSF that I would move forward but it wasn’t until March 2nd that the insurance company authorized my testing and we were able to schedule the appointments.
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 followed instructions online and got to watch some MRI and CT Scan videos so I knew what to expect.
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 smear results.
March 22nd I flew from Portland, OR to San Francisco. I got an AirBnB room just a few light-rail stops away from UCSF Parnassus. The lovely couple was astounded by the reason for my visit. They told me I could stay again for free if I had to return for more tests.
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. Here’s how it went:
I met with a donor coordinator to fill out all the consent forms. This was at the Connie Frank center on the 7th floor. 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.
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. Why? They 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.
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 technician 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 (the doctor has to determine that) but at least she confirmed all my organs were present and accounted for.
Back on the 1st floor, I waved down the guy I saw before at the lab. He found someone to do my last blood draw real quick. 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 later in the afternoon.
Up 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 into donating.
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 (which was very important and I’ll talk more about later).
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 spilled 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 my flight home was the very next morning! I didn’t panic…yet. Folks had been so accommodating I was sure we’d be able to figure it out.
I now had about 30 minutes and my itinerary said I should do two drop-in tests before my next schedule appointment at 2PM. 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. EKG would have to wait.
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. Again: Whew!
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 undressed my upper half so they could place sticky electrode patches here and there and everywhere. 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 a printout of my readings from her and I was on my way.
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 hoping for better luck with the OTHER radiology department.
In yet another building (the 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 better 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, it was in my arm. I would’ve been nervous walking on the streets with the port to go from one test to another.
The CT Scan was first and was as expected. Contrast goes in and feels warm. Lay on the bed and get scanned in the big machine.
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.
One reaction to contrast could be small but the next could be deadly. Hopefully I never have to have a CT scan again but if I do I have to take Benadryl first.
Since ANY reaction to contrast, even one tiny hive, could indicate something more serious, we had to stop everything. Nurses and 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.
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 2nd cousin, Randy, in the hospital. First time I’d seen him in 10 years. He was hospitalized more often than not at that point as his liver kept failing. The nurses knew him well. I met his partner, Josh, and got to talk with his mother, Jone. She took me around to see certain nurses who knew about Randy’s condition. I felt she was willing it into reality that I’d be approved and my liver would save Randy’s life. It was a strange mix of cautious optimism and just the sobering reality of his condition.
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.