I've learned a lot about what it means to be a living liver donor. It's pretty fascinating. Maybe you'll think so too.
Over 100,000 people in America are currently waiting for an organ. Unfortunately, many people will never get a call saying an organ has become available. A living donor is a solution to this problem. It not only shortens the waiting time for a person who needs an organ, but also reduces the pressure on the waiting list for others.
The liver is the only organ in our body that can regenerate itself. Even before I leave the hospital after the surgery, they will be able to see some regrowth starting to happen. This is just amazing and crazy to me.
Within a few months, the liver will have fully regrown and be fully functional again. The portion of liver my dad receives will also regrown to a normal size and barring any complications, also function fully.
Like I mentioned in another post, a person can donate up to 69.9% of their liver to someone. This seems like a huge amount! But again - the wonders of our bodies. For me, my right lobe is 55.7% and the left is 44.2%. I will be donating my right lobe, which also means that my gallbladder will be removed.
The surgery itself is a major surgery, but also a relatively safe one. It will take between 3-4 hours and I will spend the first night after the surgery in the ICU so they can keep an eye on things. I will stay in the hospital for up to a week, depending on how the surgery goes, and then stick around Rochester for another couple of days just to follow up with some labs and an ultrasound to make sure everything is looking good. I'll have follow up labs on days 14 and 28 post surgery, along with follow up appointments 6 months, 1 year and 2 years after.
I'll be off work for about a month to recover. I'll have a restriction of no pushing, pulling or lifting more than 10lbs for up to 8 weeks and I won't be able to drive for at least two weeks. I was told that days 1 and 2 after the surgery are generally not bad, but once that third day hits, I'll probably feel like I was hit by a truck. Good to know.
The one doctor we met with compared the recovery to a pregnancy. When you're pregnant and growing a baby, that baby is generally selfish and takes what it needs to grow. The same can be said when regrowing a liver. All of my energy will be going to the liver as it regenerates and so being extremely tired all the time is a big part of the recovery. Luckily for me, I love naps.
Recovery obviously looks different in every person, but for liver donors, their recovery is generally pretty steady. If there are complications, they normally happen right after the surgery while I would still be in the hospital. Generally, living donors do not experience any long-term problems after they donate.
Mayo in Rochester does two living donor surgeries per month and living donations make up 10% of all their liver transplant surgeries.
Now you have an idea of what it looks like to be a living liver donor!
For many months now, my Mom and Dad would head to Rochester for various tests and appointments for my Dad. Often they would be over there for 2-3 days at a time, staying in Rochester instead of driving back and forth. They would tell us about all the different appointments on different floors or different buildings - like the one blood test that couldn't be done in the same place as the other blood test he just finished - the spots they would find to sit in between appointments and listen to someone play piano, or send us pictures of the different restaurants they would eat at.
It always sounded like a lot and a bit of a nuisance. But I truly had no idea until I was in the exact same situation myself. But I'm getting ahead of myself... let's back up.
The first step to becoming a living donor is to fill out the living donor form. Simple enough. Answer some questions about myself, my health, medical history. There are very specific requirements to even be considered as a donor. You must be between the ages of 18 and 60, your BMI must be under 30, you must be in good health, you must have good/stable mental health. In addition to that, there are other things to consider such as do you have the capability to take a month or longer off from work? Would you need financial assistance for lost wages? Do you have someone to be available as a caretaker after the surgery and during your recovery?
Once I passed that step, I had a phone call interview with a Nurse Coordinator from Mayo. They explained more about what a living donation looks like as a potential donor and asked some more questions. I learned a few more things like that this surgery would take 3-4 hours, I would spend one night in the ICU then a few more days in the hospital before getting discharged. Then I would need to stay in Rochester for a couple more days for a few more follow up appointments. Those follow up appointments would continue over the next two years to make sure my liver was still functioning properly. I wouldn't be able to drive for a while and I would have a lifting restriction for up to 8 weeks. When none of this scared me away, I was told I qualified for the next step which would be to come in for a variety of tests and appointments.
At this point, I waited to give my sister and brother a chance to get through the application and phone interview process as well. We had decided that even if we all qualify for the actual tests, only one of us would go through that process at a time to see if we were a match. So if I went through the process and wasn't a match, then Meg would do the tests.
We got the appointments and tests scheduled and I was told I'll be in Rochester for three days. Over those three days I would have a lot of different tests to make sure I was healthy, had no underlying conditions and see if I could be a match. Being a match meant more than just having the same blood type and being healthy. A donor often needs to be of similar size of the recipient so that the liver volume will be close to the same. This looks at not only the overall liver size, but also the size of the vessels and such. This is often why people aren't able to match - the livers aren't close enough in size and volume.
Here's an interesting fact. A person can donate up to 69.9% of their liver to someone. During a liver donation, they will either take the right lobe or the left lobe. So if one lobe makes up 73% of the total liver mass, then that person can't donate because it's above that 69%.
Soon my Mayo patient portal was filled with messages and appointments. I also received my appointment package in the mail - which was *several* pages long. It detailed each of my appointments - where, when and with who - and also told me what I needed to do to prepare for each test or appointment. I'm not going to lie... it was a bit overwhelming! I definitely set reminders in my phone like "no more food" or "stop drinking anything".
Meg and I had talked and decided that she would come with me to most of the appointments. If I was a match, Meg would most likely be my caretaker, while my Mom would take care of my Dad. My Mom also mentioned how nice it was to have someone else at the appointments because they throw a lot of information at you and it's good to have a second set of ears. And this was 100% true. Meg was my note-taker and I was grateful to have those notes to go back and review after leaving Rochester.
So, what did I do while in Rochester? Well, let me tell you. I had appointments to meet with a Nurse Coordinator, a living donor advocate and a social worker. I had an appointment with a doctor for a general check in, along with the surgeon. I had to do a urine and blood test. The blood test included a total of 26 vials of blood. I learned that this did not beat my dad's overall record of number of vials drawn at once. :) One of the blood tests had to be done by a different technician and in in a different room. So I had one blood draw for 25 vials and then I had to walk across the room to another station and get poked again for one more vial. Super fun. I had an x-ray and an MRI. The MRI took over an hour; I was told it was one of their longest imaging sessions. Also super fun. I also had a CT scan, an ECHO test and an ECG test.
Now I had a better understanding of what my Dad has to do every time he visits Rochester. It is a lot.
One thing about Mayo is that they're really great about putting your test results into your patient portal. This can be both good and bad. But it was definitely interesting to see the results of everything. I also learned a few things!
1. I still have the antibodies in my body from when I had mono as a junior in high school. 2. I have gallstones. Which apparently a lot of people do and they might never cause me any problems or they might cause some really intense pain down the road. However, if I end up donating my right lobe, they would remove my gallbladder as well, thus saving me from potential pain and suffering. 3. I also learned I have a trifurcation of my main portal vein going into my liver. Most people's vein will split into two - one for each lobe. However, my vein splits into three going into the liver. This doesn't mean anything is wrong or would cause me from not donating, just a unique aspect of my liver.
I also had one last visit with the Doctor before leaving town who told me that as a potential liver donor, I'm "as good as they get". I was healthy with no underlying conditions. The only thing they were still waiting on was the volume and mass of my liver to see how it compared to my dad's. So I left Rochester knowing that I was a potential match and once those last tests came back, if they were good, I would be recommended to the committee to be a donor.
The following week, I got the official phone call that I was a match for my dad.
Then it was time for making an actual decision. Up until this point, I had been very deliberate about not getting ahead of myself and not thinking about what being a donor would actually look like and mean until I knew I was a match.
What goes into make that type of decision? A lot. But we'll talk about that a little bit later.
When 2025 started, I told myself I was going to do the things that bring me joy and say no to the things that don't. That was my mantra. As we are about to enter my birthday month, I've looked back over the past nine months and I am happy with what I've done so far. But we'll talk more about that in another post.
2025 also decided to throw in a curveball, because why not? At this point, I'm thinking it's a requirement every year since 2020...
Anyway... earlier this year, we found out my Dad needs a new liver. While we knew this was maybe something that would happen, everything kind of happened rather quickly once the cards started falling. In June, he was officially added to the liver transplant list.
We quickly learned that this "transplant world" was filled with things we didn't know. I mean, why would you need to know how your liver affects your oxygen levels unless it's causing a problem for you?
The good news is that my Dad is pretty stable. He's still able to do most everything he's always done. But he gets tired a lot more quickly. Plus some other fun things he gets to deal with that are all symptoms of liver disease but that you would never suspect would be related to liver disease.
When he was added to "the list" (which is not actually a list!), he was approved for both a deceased donor, which would be a full liver transplant, or a living donor, which would be a partial liver donation.
My parents brought home a packet of information from Rochester on living donors. My siblings and I all read through it. There was a very strict list of requirements. No one over the age of 60, you must have a BMI under 30, you must not have any other underlying health problems, etc. We all decided we were going to apply and see if we were a match for our dad.
When it came time for one of us to move forward in the process to the actual evaluation process, I used my oldest sibling authority and told my siblings I would get tested first. At least, I can pretend that I still have that oldest sibling authority. :)
In early September, I spent three days in Rochester getting tested. I have a much better understanding of what my dad has to do every time they go to Rochester for all of his tests. It was a lot. (more on that later too) But about a week after that, I found out that I was a match.
Then came time for the actual decision. And let me tell you, it was a big decision. We spent time talking as a family, I spent time talking to Jacob, along with his therapist, I spent time talking to my own therapist.
I decided I wanted to do it - I wanted to donate part of my liver to my dad.
Then I had to get my dad to agree.
And I get it, right? If this was Jacob who wanted to do something this big for me, I would have a really hard time accepting that. So we spent more time talking and thinking and praying. My parents did more research on living donations and what my recovery would look like.
Finally, my dad said yes. And so we've scheduled the surgery for November 20th. There is a lot that needs to be figured out before then, so I'm thankful we have the time. But a lot could change during that time too and my dad could get too sick and we would have to cancel the surgery.
I tend to process things better when I write, so my therapist suggested I think about journaling through this entire process and maybe sharing the journey with all of you. So with my dad's blessing, let's give it a shot.
So while a partial liver donation was not on the bucket list of things to do in the year I turn 40, here we are. It's going to be an adventure for sure!
I have no idea how to start this blog post. I have no idea what I want to say. Yet it feels like something needs to be said.
September 10th is World Suicide Prevention Day. A day that I will never not recognize for the rest of my life. Losing someone to suicide was one of the worst possible kinds of grief I've ever experienced. One that I wish no one ever had to experience.
So I guess on this day, I want to say that you are loved. No matter who you are, what you're doing, how you're feeling - you are loved. You are wanted. You are worthy of life. The world is a better place with you in it. The world needs you in it. Please just stay. If you need to talk, I'm here to listen. If you need to just sit with someone, I can be that someone. Just please know how much you are truly loved.
Five years ago, I wrote this blog post about a song that was commissioned in Austin's memory by his high school class. And for the past five years, I've wanted more for this song. I've wanted to honor Austin's memory in a way that showed his incredible impact on others.
This past year, I finally saw that happen. The amazing Wartburg Choir under the direction of Dr. Lee Nelson learned 'Love is...' and performed it at their Spring concert and tour.
I mentioned in the other blog post about how the process of getting the song created was part of a healing process for myself and for Austin's family. Something we didn't know we needed. I had a very similar experience during this process.
Incredibly, Dr. Nelson sent me an email on Sunday, February 23rd, letting me know that the Wartburg Choir has learned 'Love is...' and were loving it. They wanted to connect with me to learn more about Austin and why this song was created. For those of you that don't know, February 23, 2018 is when Austin passed. To get this email from Dr. Nelson on this day truly felt like a gift from heaven. Or to use a phrase from Dr. Nelson, a "God wink".
Shortly after, we set up a Zoom meeting with myself, Connor Koppin (the composer) and the Wartburg Choir. Before the meeting, I wanted to try and find some of the things Austin's past students had said about him, to share that with the choir - how important his teaching was. I have a box of things from when Austin passed and so I opened it up for the first time in probably as many years.
My emotions were all over the place going through that box. We had asked people to send us letters and memories of Austin so that Jacob can read them one day when he was older. But I think I forgot about the amount we did received. I had been saving all these memories for when Jacob was older but seeing them all, I realized that I have all of these memories about AJ right at my fingertips for the days when I struggle to remember him before his illness took over. It was a gift, I realized. (Maybe more on this another time)
Back to the Zoom meeting, I shared memories of AJ. How we met, how much the choir meant to him. And as I talked, I remembered stories that I had not thought about for a really long time. Like when I talked about how he proposed on our international choir tour, I remember how he had asked for an extra key card from the hotel to help hide the bulge from the ring box in his pocket. Or that the night before, he took the ring out of the box, filled the bathroom sink with water and checked to see if the box would float. You see, he proposed while on a gondola ride in Venice Italy and he did not want to accidentally lose the ring over the side of the boat! It's so easy to forget these little things that highlight who AJ was as a person. And so it's so much of a gift to be reminded of them.
It was also really great to hear from Connor and what creating the piece meant to him. What I hadn't known before this was that Connor actually met AJ. While AJ was teaching at Riverside, the Wartburg Choir came and did a workshop with them. Connor mentioned that he can remember the passion and energy that AJ had while teaching those students. Knowing that Connor knew AJ as a person made me appreciate his composition for the song so much more.
During the call, the choir sang the song for Connor and I. This was the first time I was truly hearing the song as it was meant to be heard. And I can't tell you how much that filled my heart in that moment. I couldn't wait for others, especially AJ's family, to be able to finally hear the song.
In another "God wink", the Choir was doing their tour run out the weekend right after AJ's birthday. (The tour run out is where the choir will travel to a few different areas close by and perform the concert as sort of a run-though before the actual tour happens.) The first concert took place in Mount Vernon, where the Mount Vernon High School Choir also performed. Their current director was also AJ's high school director in Tipton. The second concert was in Des Moines where we were able to gather as a family to celebrate AJ's birthday and attend the concert together.
Both concerts were just an incredible experience. If you've ever been to a Wartburg Choir performance, I don't need to tell you that they knocked it out of the park.
I also believe that the timing of all of this was exactly how it needed to be. I personally am in a much different place in my own grieving process than I was five years ago. I have worked on processing a lot of my feelings and have worked to find myself in a better place. And a lot of this process brought up so many memories of AJ and so many emotions. But instead of being painful, like they absolutely would have before, they were a comfort to me. It was like a warm blanket surrounding me.
It was so meaningful to finally have this song heard by others. But it was also meaningful because before the song, Dr. Nelson talked about Austin and what this piece means. And it was also an opportunity for us to share the message "You are loved and wanted here." to anyone who needed to hear it. And that is truly what meant the most out of everything. That maybe someone who is struggling would hear this song and realize that they are loved, they are wanted. They would decide to stay. And I am so grateful for that.
Ultimately, that's what this is all about. To honor AJ's memory and maybe changing the life of someone else; maybe saving the life of someone else. AJ was an amazing teacher and made a meaningful impact on the lives of those he taught. My hope is that this song is a way for him to continue to have an impact on people's lives.
Please enjoy this self-recorded video of the Wartburg Choir performing 'Love is...' under the direction of Dr. Lee Nelson at the St. Ambrose Cathedral in Des Moines, Iowa. And know that you are important. You are loved. You are worthy. You are wanted. "Let this love blind your shadows."
P.S. I just received news from Dr. Nelson today that 'Love is...' has been published by ECS Publishing. Inside the front cover is a program note from Connor and myself. And a reminder for those struggling that there is a place for them here. How's that for another "God wink" on World Suicide Prevention Day?
Going into 2025, I didn't pick a word of the year. I didn't make any resolutions or set any goals.
There are some things I want to try and do more of though: write more, dance it out (a la Christina Yang), walk more, craft more, be grateful more, walk through the world with more confidence.
But if I don't do these things, well, that's okay too. I'm not going to beat myself up about it.
I'm going to say yes to the things that bring me joy and no to the things that don't. I'm going to stand up for myself and not deal with any bullshit. I'm going to rest when I want to rest and go out when I want to go out. I'm going to occasionally spoil myself and likely spoil Jacob more. I'm going to lean into my authentic self and let her be the one in charge. I'm going to do what I want and not care what anyone else thinks.
This year (2025) I turn 40. And I am welcoming it with open arms. I'm ready to live my life true and fully as myself. Zero f*cks to give (I hope).
My 30's were chaotic. They were stressful and busy and hard. And yes, there were absolutely some amazing times in there as well. But now I'm ready for a calmer decade. One where I'm just going to live my life the best that I can and let everyone else do whatever they're going to do. (ref. Let Them theory)
I'm looking forward to this year. To this next decade. I'm looking forward to seeing the person I grow into.
