After being approved to be a living liver donor, the next steps were to:
- Choose a transplant date.
- Schedule the surgical consults.
- Bank a unit of my blood.
- NAT testing (blood tests).
- Start taking two medications; a bile thinner and stool softener.
I’ll cover those first four things in this post.
Fundraiser T-Shirts now available!
Visit https://www.etsy.com/shop/ThoroughlyThriving to order one.
We get $7 to $10 per shirt to help my cousin’s family with expenses related to the transplant.
Inspired by John 15:13 which says, “There is no greater love than to lay down one’s life for one’s friends.” It is also a prayer that others will come to know greater love in Christ.
Scheduling a date.
With the news that I was approved came the expectation that things would move along quickly. Not so much.
April 10th – I found out I was approved to be a donor.
[Insert another hideous waiting period here.]
June 15th – We were able to pencil in a transplant date.
We couldn’t pick a date because my cousin had some testing to be done first. As he is hospitalized most of the time, it’s hard for him to make appointments unless they order a medical transfer.
This was a different kind of waiting struggle than before. I had a long list of things to prepare, but could not act on any of it. Everything was just IFs and MAYBEs. For me, this waiting period was about surrendering control (at least the illusion of it).
Transplant Date: August 24
Finally the transplant team decided none of his remaining tests would prevent us from picking a date. Once the date was chosen, I had to jump on a few things.
Book that hotel! There are only two hotels within walking distance of UCSF Parnassus. I booked a week’s stay at The Stanyan Hotel for my family right away because things fill up fast.
Apply for Donor Assistance. To get approved for the National Living Donor Assistance Program, you need a confirmed transplant date. Both the donor and recipient have to submit financial paperwork to apply. I sent mine in on June 14th. Randy got his in a bit later. I got approved for assistance on July 11th.
Are my affairs in order? Fortunately my donor mentor had given me a heads up about a durable power of attorney, advance health directive, and a will. Better yet, my husband had already started these things some time ago. We got all the paperwork witnessed and notarized.
Then there was time off work for J and my mom. Who will watch our dog? Water our plants? Where will the kiddo stay? Where will I go after I’m discharged from the hospital? Etc.
The Surgical Consult Trip
UCSF made my appointments a few weeks prior to the surgery itself. That way, it was close that I could donate my blood and do my NAT testing all at the same time. NAT tests are only good for 30 days and the banked blood is only good for 45.
However, UCSF literally waited 2 weeks to the day to tell me that my surgical consult was scheduled for August 7th. My itinerary was a full day of appointments because I had to redo some tests. I rushed to book flights and find a place to stay for two nights.
Major thanks to Frank & Jenny, the AirBnB hosts I stayed with on my evaluation trip. They let my husband, toddler and I stay at their home again for free. Their guest room was already rented out but they let us use their bedroom and I am forever grateful for the convenience that afforded us!
So…traveling with a toddler. We opted for public transportation to avoid lugging a carseat around. It was a great test run with the kiddo, before the actual transplant trip. We learned a few things we’ll do or plan for better next time.
Another One-Day Whirlwind
8:30 AM – Abdominal Ultrasound (Repeat)
Again, I had to fast from the night before. Learning from my first trip, I showed up about 15 minutes early and mentioned I’d also need a Chest X-Ray later today and wondered if we could just do it now. They did and it was a huge time saver. Boom! Patient Level: Pro.
10:00 AM – Meeting with Dr. Roberts, Chief of Transplant
Dr. Roberts will be sewing part of my liver into my cousin. This was barely a 20 minute meeting. He just shared all the risks and cautions and how-to-prepare tips off the top of his head. They’ve only done this a few hundred times. I learned that they no longer place a bile drain post-surgery because their techniques have improved so much that donors rarely leak bile post transplant anymore. Sweet.
Dr. Roberts mentioned eating an anti-inflammatory diet before surgery (or “soup and salad”). Said the narcotics given for pain management can cause nausea. Some people lose weight afterward, but it shouldn’t be anymore than 5 or 10 lbs.
I was surprised by two things. First, I can give them a disposable camera and they’ll take photos of my surgery for me. I’m still trying to decide if I think that is cool or crazy? Second, he never brought up the “You can back out at anytime if you want too” thing. I suppose if people get this far along they are pretty committed.
I met my donor coordinator after Dr. Roberts left. She gave me a few more details about checking into the hospital before surgery, what to expect, that I should be sure to eat before I check in. We also talked a little about recovery, when my colostomy will be removed, what I should eat after surgery, etc.
The she pulled out a grenade. My cousin had tests that still needed to be completed. She said that IF they had to move the transplant date they would let us know as soon as possible. WHAT?! My cousins had heard nothing about this possibility. Was this a real concern? I decided to ignore the grenade like it was a dud and pray it didn’t go off.
Drop-in NAT Testing and Lab Work (Repeat)
J took bubs back for a nap while I gave my blood and urine samples. This time it was only 12 vials of blood. Some of them were for the nucleic acid test (NAT) – which makes sure I don’t have any sickly viruses or bacterial infections. And apparently I’ve become incredibly clumsy at peeing in a cup. Ugh.
11:15 AM – Lunch at the Main Hospital Cafeteria
The Transplant Pharmacy was in the basement of this building. I swung by to see if I could pick up the medications early. It was 11:50 and no, they didn’t have my Rx in their system so…try again later.
Drop-in Chest X-ray (Repeat)
My itinerary said to do this after lunch. Fortunately I’d already done it in the morning because, as it turns out, I needed more time in the afternoon.
Drop-in EKG (Repeat)
I waited for about 20 minutes for a 20 second procedure; my least favorite from the evaluation trip. This time I didn’t have to undress at all and the tech was super friendly.
Drop-in Transplant Pharmacy
My “scheduled” time for the pharmacy. It was about 1 PM but, nope, Rx wasn’t in their system properly. I called the transplant center and let them know I was having issues getting the medications. I had a few more chances to pick them up before they closed and had a hunch it was going to be a close call.
2:15 PM – Meeting with Dr. Eilers
J and the bubs came with me to my final two doctors meetings. For having just come out of the O.R., Dr. Eilers was very kind and friendly. He explained in more detail their pain management strategy and that some liver donors feel pain in shoulder afterward. I will be able to self-administer the pain meds with a button. The best plan, he said, was to slowly back off the pain meds, not try to be a hero and wait until the pain is unbearable before you push the button. He gave me his number in case I had any further questions and we were finished by 3pm.
3:25 PM – Meeting with Dr. Ascher, Donor Surgeon
This was the meeting I was most interested in. My surgeon. One of the best there is for living liver transplants. I told her that I’d heard as much as she said, “Yes, I am. For now.”
Again, this was a surprisingly short meeting. She started right in with some quick and direct questions.
Who are you donating too? How close are you? What is his diagnosis? When do I plan on donating? Hold old is he? How old are you? How much do you weigh? What do you do to stay fit? Stand up so I can look at you. You don’t look as big as 140 lbs. How do you handle pain? Do you have the support you need at home?
At this point she looked directly at J and asked him, in so many words, why he supported me. Later, we decided Dr. Ascher was testing us to see if we had confident answers to the basic questions. I’m sure she was NOT unaware that our transplant was scheduled for August 24th. I believe she saw that I knew what I was getting into and was committed to going through with the surgery as well as the recovery.
Here is a little clip of Dr. Ascher:
For all her directness, she is still very kind. She gave the bubs a high five and a pen and paper to scribble with. She stressed the importance of avoiding bowel issues after surgery, recommended I get two “muscle shirts” (I think she meant compression shirts?), and said she encouraged family to come see us before we went into pre-op.
Last Chance for Pharmacy
It was barely 3:45 and I had about an hour before I had to catch a bus for the blood donation center. We went back to the pharmacy again. Apparently the meds were in my patient info, but that wasn’t the same as an E-prescription order in their system. The very kind pharmacist was trying to get “them” to enter it correctly.
So we went up to the 9th floor to see the transplant recovery wing (called “9 Long”). The hospital is an older building with dark hallways. It was helpful to see it in advance and prepare myself for where I’ll live for 5 to 7 days.
At just about 4:45 PM, I finally got my two little pill bottles. After a 15 minute bus ride (and being cursed at and accused of committing identity fraud by a woman on the bus), I arrived at Blood Centers of the Pacific.
5:15 PM – Blood Donation
I had to paid $300 to bank a unit of my own blood. UCSF says their reimbursement should come in about 2 to 4 weeks. We had a bit of a scare in that the nurse did not believe the vein my right arm to be a sure bet. My “good vein” on the left arm had already been used at the hospital and she was upset by that. She explained very carefully that it might not work and asked if I wanted to try it anyway? I was getting a little worried it wasn’t going to work out. But yes, I wanted to try it anyway! I couldn’t just come back another day.
I texted friends prayer and reminded myself that God wants this to all work out. And it all worked out. My right arm vein is a champ.
Takeaways from the trip.
After this, the transplant felt all the more real and like it was coming fast. My surgical consults weren’t quite as I expected, but they were positive and left me feeling confident. My husband got to see the hospital campus and he’ll know how to get around a lot easier when I’m stuck on 9 Long. Learning how to travel with the bubs together will make the transplant trip much easier.
Our flights were delayed coming and going and yet our rambunctious little 15 month old proved to be pretty adaptable, so long as he had his blanket and plenty of food.
Thanks for reading this awfully long post. I hope its helpful for anyone looking into living liver donation. Remember if you’d like to help support our family, you can:
- Pray for my cousin, his health, and our family.
- Donate a little toward his family’s travel costs
- Buy one of our fundraising t-shirts to help my family’s costs.
Our liver transplant story will continue in the next post. Thanks to everyone who has donated already and has been supporting us in prayer!