After being approved to be a living liver donor, the next steps were to:
I’ll cover those first four things in this post.
With the news that I was approved came the expectation that things would move along quickly. Not so much.
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).
And so, on June 15th, after the transplant team decided none of his remaining tests would prevent the transplant, we picked August 24th as the 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. This would allow my husband and adopted mother to visit me while I recovered in the hospital.
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. I’ll share more about this later but the financial assistance from the NLDA program was so important.
Get 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.
Family scheduling. How much time would my husband need to take off work? 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.
UCSF made my surgical consult appointments a few weeks prior to the surgery itself. That way, it was close enough to the transplant that I could donate my blood and do my NAT testing at USCF all at the same time. Apparently NAT tests are only good for 30 days and the banked blood is only good for 45.
However, UCSF 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!
Remember the AirBnB hosts I stayed with on my evaluation trip? I contacted Frank and Jenny and they let my husband, toddler and I stay at their home for free. Their guest room was already rented out but they let us use their own bedroom! 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.
This place is starting to feel really familiar.
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.
This was barely a 20 minute meeting. Dr. Roberts will not be my surgeon. He’ll be the one sewing part of my liver into my cousin. However, as Chief of Transplant, he shared all the risks, cautions and how-to-prepare tips. He just rattled them off without consulting a list. 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. Leaking bile was one of the horror story things I’d read online about liver donor side-effects.
Photos of our surgeons on 9 Long. Fun fact: they’re married.
Dr. Roberts mentioned eating an anti-inflammatory diet before surgery (or “soup and salad”). He said the narcotics given for pain management can cause nausea (spoiler alert, they definitely did). Some people lose weight afterward, but it shouldn’t be anymore than 5 or 10 lbs.
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. They’ve also heard this from several others along the way. But again, Dr. Roberts wasn’t MY surgeon.
She gave me a few more details about checking into the hospital before surgery, what to expect, and 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 (Randy and his mother Jone) 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 (spoiler alert, it did).
I couldn’t eat…but I got to watch them eat.
At this point, my husband took our kiddo 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.
I ate at the hospital’s main cafeteria. If I had to do this all over again I’d be better about packing snacks or a sack lunch to take with me as I ran from appointment to appointment.
This was in the basement of the building. I swung by to see if I could pick up the medications I’d need early. It was 11:50 and no, they didn’t have my Rx in their system so…try again later.
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.
I waited for about 20 minutes for a 20 second procedure; my least favorite from the first trip. However, this time I didn’t have to undress at all and the tech was super friendly. Much better experience.
Transplant Pharmacy – not what I expected so I didn’t notice it right away.
My “scheduled” time for the pharmacy, but nope, Rx still 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. Still, I had a hunch it was going to be a close call.
My husband brought our son to my final two doctor meetings. For having just come out of the O.R., Dr. Eilers was very kind and friendly. He explained in detail their pain management strategy and that some liver donors feel pain in their shoulder afterward. He said 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. Don’t 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.
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.” Very matter of fact like.
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 my husband 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.
DYK There is a whole entire episode all about Dr. Ascher on The Surgeon’s Cut on Netflix? You can also watch this short interview of her here. She’s pretty amazing.
For all her directness, Dr. Ascher is still very kind. She gave our kiddo 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.
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. Still no prescriptions in their system! Turns out, the meds were in my patient info, but that wasn’t the same as an E-prescription order in the pharmacist’s system. The very kind pharmacist was trying to get the folks at the transplant center to enter it correctly.
So we took some time to go up to the 9th floor to see the transplant recovery wing (called “9 Long”). It was helpful to see it in advance and prepare myself for where I’d live for 5 to 7 days after the transplant. The hospital is an older building with sections of dark hallways. Hallways I’d be walking to help speed my recovery.
The staff of 9 Long.
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.
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. This blood would be stored, just for me. In case something went wrong during my surgery and I needed blood, UCSF would have my own blood right there in the room to pump into me.
We had a bit of a scare as the nurse did not believe the vein in my right arm was 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.
Feeling nervous, I texted friends for prayer and reminded myself that God wants this to all work out. And it all worked out. My right arm vein is a champ.
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 through San Francisco with our kiddo 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.
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