I wrote this journal as a 3-part series that documents my experience as a living liver donor at Yale New Haven Hospital during the summer of 2017. This first part covers the decision-making process, testing and the time leading up to surgery. The second part is about my time in the hospital, and the third part covers my recovery and getting back to normal life. I documented all this to be a resource for other potential donors, to be able to read a first-hand account from someone who went through this process as an altruistic donor. I hope you’ll find this interesting. Being a living liver donor was an incredibly rewarding undertaking for so many reasons that will hopefully come through.
To set the stage, my name is Ryan Lee and I was 40 years old when I donated 63% of my liver in June, 2017. I’m married to a wonderful woman named Melanie and we have a young son, Parker. I’ve worked for a strategic marketing agency in Essex, CT named Overabove for the past 2 years. The company is owned by John Visgilio and Ralph Guardiano and has historically done a lot of pro bono work for people and organizations in the community. I report to John. He and and his wife Wendy have close family friends, Rob and Lori Wallace. In November, 2015, Rob was diagnosed with liver cancer. Not wanting to ruin the holidays, he waited to share this news with his family until January, 2016. For the rest of 2016, the Wallaces hoped and prayed as Rob slowly moved up the UNOS list while undergoing several procedures to fight off the tumors that kept showing up. Toward the end of 2016, John and Wendy convinced the Wallaces to go public with their story and their need for a living liver donor, which they had been advised by the surgeons at Yale New Haven Hospital Transplantation Center would be Rob’s best chance for a long and healthy life. John also offered the Wallaces that Overabove would create a campaign for them to raise awareness and help find a donor.
This was where my involvement in the story began.
Things I didn’t know before this all started:
- It is possible to be a living liver donor
- The liver regenerates to about 95% within 6 weeks after surgery and 100% within a year
- The donated portion in the recipient also regenerates in the same timeframe
- Hospitalization for the donor is usually 5-7 days after surgery with the first 24 hours in the ICU
- Recovery (and time out of work) can be 2-3 months
- Although the liver regenerates, it can only be donated once
- Full disclosure, I didn’t even know where my liver was located 🙂
Pre-Op Day -143 | January 30, 2017
We’d been working on a project at Overabove for a few weeks. It was a unique project – although the marketing strategies we were considering were in line with the ways in which we’ve helped clients expand their reach, broaden their audiences and ultimately increase the bottom line. Moving the needle for this project had a whole different meaning. The goal – drive as many phone calls as possible to the Transplantation Center at Yale New Haven Hospital to find a living liver donor for Rob Wallace.
So far we’d launched a website, RobsJourney.com and a Facebook Community Page, @RobWallacesJourney. I’d been peripherally involved in the content, more so handling the backend setup and building the Facebook page along with discussing with the Wallaces why a page like this can be successful. We’d talked through some content ideas for building a community and how tapping into that support system can be a source of strength in times of need in addition to being a moving story that people would share and organically expand the reach of their message. Then it struck me… Rob Wallace needed a donor with type-O blood (+ or -) and I fit this category. I wondered what was involved in being a living liver donor.
Pre-Op Day -142 | January 31, 2017
I let the thought float around in my head for the past 24 hours – ‘could I be a liver donor?’ Melanie and I were discussing Rob’s situation a little bit this evening and I told her that I was a blood type match. Melanie’s immediate reaction was,
“Maybe you should call to see if you could be the donor.”
Our connection is incredible. I wanted to hear that. I wanted to be the donor, but I also would never even consider it if Melanie wasn’t on board or if I had to convince her that it was a good idea. She has such a tremendous desire to help people and is so full of love. Her support in this massive undertaking made it possible to consider it. There were lots of reasons why I wanted to do this. I did have my concerns, of course. As the father of a young child and sole financial support for our family, there were some obvious and serious considerations. But, we agreed that I should call the next day. After Melanie fell asleep, I did some research online and learned quite a bit about the process.
Pre-Op Day -141 | February 1, 2017
My first call to the Yale New Haven Hospital Transplantation Center. The office was closed by the time I had a chance to call and I didn’t leave a message. Eager to get started, I called again the next morning and left a voicemail.
Pre-Op Day -139 | February 3, 2017
Lisa Hughes from the Transplantation Center called me this afternoon and we talked for a half-hour. She gave me a great overview of the process and it seemed like an initial screening to see how I felt about the significance of the surgery, the potential financial impact of being out of work for an extended period of time, and to make sure I had a good support system in place. None of it really scared me because I’d already read through materials about living liver donation online a few nights prior. I was just happy to have a conversation with Yale about the possibility of being Rob’s donor. We discussed my height and weight, general health, how much I exercise and so forth. Lisa advised me that it could be 2-3 weeks before I heard anything (they already had a few people in the queue to be tested) but that my physical size would be a good fit and that might bump me up the list. I’d met Rob a couple of times and remembered him to be about my height and weight, and was encouraged by that comment. She also asked me to abstain from drinking any alcohol from that point forward.
Pre-Op Day -120 | February 22, 2017
It had been almost 3 weeks since first reaching out and I really wanted to get this going so I called Yale and left a voicemail to check in on things. At work we’d been looking closely at the analytics behind our online efforts – web and Facebook, looking at the family’s cadence of posting to the Facebook page, and coming up with ideas to push this forward even more. Rob’s situation sounded pretty urgent, and we were desperately trying to find him a donor. It helped that John is close friends with Rob because we heard John’s impression of the situation first hand, and essentially, his friend was running out of time.
Pre-Op Day -111 | March 3, 2017
Over the past week, the transplant coordinator and I traded several phone calls and were working on scheduling my first day of testing for the following week. They already had a couple of people in the midst of testing which is why it was taking so long to get to this point of scheduling. The fact that I would be starting testing made the rest of the day more interesting though!
At work we had a call with Rob and Lori today to learn how his process of finding a donor was going. We at Overabove had been working on a long list of ideas to try to expand our reach in finding a donor – anywhere from a social media contest to lawn signs – no idea went unconsidered. We talked through a lot of ideas and listened to the family’s feelings about the process. Lori was understandably eager to do anything possible. Apparently, Yale had been inundated with phone calls and they’d had several people start the testing process but none had gotten very far other than one or two had made it through the first round of tests. Rob was a little leery of doing a lot more for the campaign because of the volume of phone calls already being generated. He seemed very optimistic about the outcome of all this and didn’t want to burden the team at Yale.
Following this meeting, I went to talk to John to let him know that I would be starting testing the following week to see if I could be the donor for Rob. I was going to need the following Wednesday off from work, and explained what was involved in the first day of testing. John was totally taken by surprise and had a lot of questions, the most prominent of which was, “are you sure you want to do this?” Absolutely. I loved seeing the look on his face when I told him.
It’s important to note, here, that my decision to become involved had absolutely nothing to do with John’s friendship with Rob. Not once did it cross my mind that I was doing this for any reason other than wanting to help someone out. I’m sure this goes without saying, but it’s important to make this clear nonetheless.
Pre-Op Day -106 | Wednesday, March 8, 2017 | Testing Day 1 | 181.4 lbs
First day of testing and meetings at the Yale New Haven Hospital Transplantation Center. I wasn’t allowed to eat or drink after midnight.
8:30am – Blood Draw and EKG
9:00am – Chest X-Ray
9:30am – Met with Janylet Dopico, Living Donor Liver Coordinator
10:00am – Met with Dr. Emre, Transplant Surgeon (Melanie had to be at this appointment).
11:30am – MRI
1:00pm – CT Scan
2:30pm – Met with Dr. Fehon, Transplant Psychologist
It was a long day and on the drive home, Melanie and I discussed how it all went. She’d met me at the hospital because she needed to be in the appointment with Dr. Emre, my potential surgeon. It felt amazing to actually start the process and I hoped nothing would be revealed that would prevent me from continuing on in the testing process. I’d been advised multiple times by this point of the following:
- The hospital would keep my identity completely confidential and the family would never know that I was considering being Rob’s donor – just that there was another potential donor beginning the testing process. At any point, I could change my mind and the only thing the Wallaces would know was that a potential donor had been found to be medically unfit to be the donor. This was relieving (in case some sort of emergency prevented me from moving forward) but unnecessary because my mind was already made up to proceed if I was approved. We live in a very small town and have several mutual acquaintances so there was little chance we could remain anonymous.
- The testing process is very extensive and may uncover some sort of medical condition that I may need to seek treatment for. This was actually kind of reassuring, because it’s not often that one gets to go through this kind of extensive testing without paying through the nose for it.
One other note from the day – Dr. Emre took a look at me, checked out my mid-section and asked if I could lose some weight. After he walked out, the nurse told me he says that to everyone so I shouldn’t take it personally. This was pretty funny actually. Dr. Emre has a very dry sense of humor and I couldn’t tell if he was serious or not. That said, I took it as a mandate and almost immediately changed a lot of things about my diet.
Pre-Op Day -101 | Monday, March 13, 2017 | 181.4 lbs
I received a call today to discuss the test results from last week. The scans showed that my liver was “beautiful” (their words) and it was divided in a good place* to keep me in the running to be Rob’s donor. The other tests were totally normal and the only thing that came up in all the bloodwork was that I had high cholesterol. Combine this with Dr. Emre’s request that I lose some weight and there were drastic dietary changes in my future. Time to minimize cheese and other saturated fats, sweets and other unhealthy food.
*In order to be a living liver donor, the donor’s liver must be divided in a location that would allow the donor to retain at least 30% of his/her original volume. Everyone’s liver is different, and the division in everyone is different.
Pre-Op Day -97 | Friday, March 17, 2017
As a thank you for Overabove’s efforts so far in trying to find him a donor, Rob had a few of us out to his glass studio to learn about what he does there and to let us melt some glass. We were also filming a video for him. I made sure to spend a lot of time around Rob while I was there. I didn’t know him very well, and I wanted to try to pick up some of his energy, learn more about him and just kind of get to know him a little. It was all casual conversation type stuff, but it was a pleasant experience being in his presence and feeling like he was someone I would really want to help. Knowing about his family’s constant anxiety about finding a donor in combination with knowing that I’d made it through the first round of testing put me in an extremely interesting position.
I felt like I had a very powerful secret and was looking forward to Rob finding out about it at some point soon.
Pre-Op Day -94 | Monday, March 20, 2017
In my @oldlymelocal Instagram account, I posted this image today:
I had been watching this form over the course of several mornings while walking my dog. It felt complete on this day so I took the photo and posted it. The following day it was warm out and this whole formation melted and fell apart. Exactly one month later, on 4/20/17, I would learn I was approved to be Rob’s donor. Interesting timing.
Pre-Op Day -91 | Thursday, March 23, 2017 | Testing Day 2
Second day of testing at the Yale New Haven Hospital Transplantation Center.
7:30am – Blood Draw
8:10am – Echocardiogram
9:00am – Met with Dr. Chen, Cardiac Clearance
10:00am – Stress Test
11:30am – Met with Michael Joyce, Transplant Social Worker
1:30pm – Met with Dr. Schilsky, Transplant Hepatologist
2:45pm – Met with Janylet Dopico, Living Donor Liver Coordinator
This was a pretty easy day with a lot of discussion about the various aspects of the surgery. The meeting with Michael Joyce was eye opening as to just how far YNHH goes to support living donors. He made sure I fully understood and was prepared for the financial impact of being out of work, which would be one of the very real possibilities that could prevent me from following through with this. But, he talked all about the resources that may be available. I had never done a stress test before but as a runner I wasn’t too worried about running on a treadmill. I kind of wished I’d brought some shorts to change into though because after intensely running uphill on the treadmill in my jeans for 20-30 minutes, I was definitely getting my sweat on.
Pre-Op Day -79 | Tuesday, April 4, 2017 | Liver Biopsy
Today, I had a liver biopsy. Dr. Schilsky wanted to do this test as a final screening of my liver function and I’ll be totally honest, as I lay there waiting for him to come in, it occurred to me that I actually had no idea where my liver was located in my body. For those reading who also don’t know, the liver is on the right side, tucked under the bottom of the rib cage. I’m not ashamed to admit this; I would find out over the next several months that many people don’t know where their liver is.
The biopsy was a fairly simple process. I laid on my back with my right arm extended up and over my head. He numbed the area and then inserted a needle to extract a tiny cylindrical sample. I definitely felt a sharp pinch when the needle went into my liver but it was a quick process and the pain subsided over the next hour or so. The doctor asked if I wanted to see it and of course I did! It wasn’t much to look at – a tiny reddish/grayish thing suspended in liquid. I had to lay there for a while afterwards, I guess that’s part of the immediate healing process. Afterwards, I went back to work.
For the next couple weeks, there would be a few phone calls and emails between Janylet and me. There’s a biweekly meeting to discuss all the various potential living donors and the panel must all agree to approve each living donor. The biopsy delayed the decision about my approval, so these few weeks were fairly nerve wracking. Melanie and I were eager for the results and approval. To this point only Melanie, my boss John and I knew that I’d embarked on this possible journey. I wanted so badly to share the news with my family, but didn’t want them to worry about this if I ended up not getting approved.
Pre-Op Day -63 | Thursday, April 20, 2017 | 178.4 lbs
I was meeting with John about some projects at work and while in his office, I missed a call from Janylet, my nurse coordinator. This was the call I’d been waiting nearly 3 weeks for and after the meeting I immediately tried to call her back. She then emailed me something that would change my future forever:
I am glad to inform you that you have been approved as a living liver donor for Mr. Wallace. I know that you wanted to have the surgery scheduled for mid-June. Let me look at the surgeon’s availability.
This was really happening! I immediately called Melanie to tell her the exciting news. It was a very nervous chat. I then went back to talk to John and it was a special moment when I told him what was happening. As I mentioned a while ago, this “project” at work was so much more than that. Saving his friend’s life was the ultimate goal of the “project,” and here we were, one step closer. We shared a hug of mutual respect.
Pre-Op Day -62 | Friday, April 21, 2017
Melanie and I had my mom and dad over for dinner tonight so we could share the news. This had been quite a secret to keep to ourselves for nearly 3 months and it would be a big relief to tell those closest to my heart. Truthfully, I didn’t want anyone to worry about me, and the impact of this surgery, if any of the testing may have ended up ruling me out. Or, if Rob had received a deceased donor liver prior to this moment. It was a completely surreal experience to tell my parents. I love my parents and I could tell they were very proud of me for what I embarking on.
Pre-Op Day -61 | Saturday, April 22, 2017
I ran over to my brother Dylan and his wife Sally’s house this evening after my niece and nephew went to bed so I could talk to them about all of this. It felt SO good to start telling people about this. I have a tremendous support system and it had been tough keeping this a secret from all of them. Again, I just didn’t want anyone to worry about anything.
Pre-Op Day -59 | Monday, April 24, 2017 | 177.2 lbs
John and Tracey (our Chief Financial Officer at Overabove) called me into John’s office almost first thing today. John laid it all out for me. He and Ralph had talked a few times over the weekend and had decided that this was a very unique situation at Overabove – one that they wanted to do anything they could to support my family and me. The solution they’d come up with was to cover my salary while I was out of work for the surgery and recovery. I couldn’t even believe what they were telling me and I fought back tears of gratitude. A monumental and final puzzle piece was falling into place. I was literally speechless and wished Ralph could have been there so I could express to him my gratitude as well. He travels a lot for work so I went back to my desk and immediately emailed him to thank him.
Over the next few days, John and I talked a few times about how to reveal to the Wallaces who their donor was. They had learned from the hospital that a living donor had been approved for Rob. They had been through a very stressful couple of years and Melanie and I really wanted to set their minds at ease by revealing my identity to them. But, we could not figure out how to stage something (because we barely knew them) and felt their family deserved a heartfelt “reveal party.” John and Wendy offered to host a dinner at their house a few days later and would help create the surprise aspect of it by pretending it was a celebratory graduation party for their daughter Brenna.
Pre-Op Day -49 | Thursday, May 4, 2017 | 175.4 lbs
Melanie borrowed a book about anatomy from the library so I could try to explain to our 4-year old son Parker what I was going to be doing and to prep him for the Friday night reveal dinner. She and I had gone back and forth several times about whether or not it would be appropriate for him to be there but ultimately wanted it to be a moment in his life. She had a meeting this evening, so I was on my own…
When I was putting him to bed I told him I had to talk to him about something really important. We looked through the anatomy book and we talked about bones, veins, muscles, and then organs. I told him there was a man in Old Lyme who needed some help and that there are amazing doctors that can take a piece out of one person and put it inside someone else and save their life. I told him that mom and I had talked and I was going to be helping this man. He asked me, “Wait, what does the liver do?” In the anxiety of the moment, I drew a complete blank and so we had to look it up and read about it. The description included the word ‘blood’ several times and after a while he so innocently asked,
“…wait, why does it keep your blood in?”
and then completely melted down in tears. He was scared and didn’t understand. I cuddled with him, held him and tried to better explain it to him. I told him the Wallaces’ three kids were very scared about losing their dad. I told him doctors are amazing and I told him I have a magic liver that would grow back. He wondered how long that would take and I said just a few weeks. He cried a lot. We cuddled, he cried more. We eventually worked through the tears and when I asked him if he had any questions he said, “hmmm do the kids have stuffed animals?” It was such a pure, innocent and beautiful question because his stuffed animals are what he turns to when he needs some reassurance. We talked a little more and then we read some books so he could fall asleep. He was still not very happy about it all but the next morning he seemed ok. This was one of my most challenging parenting moments to date. As a father, I hope to be a role model for my son and while he’s too young to remember much of this, we have this moment on video so we can watch it together again someday.
Pre-Op Day -48 | Friday, May 5, 2017 | Reveal Day
Today was the big day. I could not focus at work to save my life. At times my arms were shaking with anxiety and nerves. I was so excited to tell Rob I was going to be his donor, and so looking forward to the actual moment when he realized what was happening. Melanie, Parker, my mom and dad, Melanie’s mom and dad and I all got to John and Wendy’s house around 5:30ish after work. I left work a little early and went home to change my clothes and tried to relax a little. Everyone congregated at our house and then we left. Wendy was so excited when we got there. John too. These guys had been in the middle of all this for a long time.
When the Wallaces finally pulled into the driveway (thinking they were coming to a small graduation party for John & Wendy’s daughter Brenna), everyone assembled in the kitchen area… Rob and Lori’s youngest daughter Lauren was the first to come through the doorway. She saw me and I think she asked Wendy “is that him?” I gave her a little nod and Wendy had her stand next to her to make room for Lori and the rest of the family. Lori was next and walked in saying… “something is going on here,”… Then looked right at me and asked, “is it you?!” I gave her a smile and she burst into tears and gave me a huge hug, and then one to Melanie as Rob walked in. Confused about the unfamiliar cars in the driveway and faces in the house, I handed him a card that simply said,
“Rob, I have a very special gift for you. With Love, Ryan”
He read this and said “I had a dream about you, man” and then gave Parker and me a huge hug, then Melanie. Their son Ryan and daughter Caroline came in while this was all happening. Ryan came over and hugged Parker and me. Caroline was next and then Lauren. There were a lot of amazing tears. Rob almost immediately started asking me questions and I told him I had prepared a little toast I would like to say to them all. People circled up and I did the best I could to get through a 2-page toast to them. I had edited and rehearsed this toast about 100 times leading up to this moment and could never once get through it without choking up. It didn’t come out any more smoothly in the moment.
After the toast, the night is a blur but was filled with amazing moments of conversation between everyone that was there. Earlier in the day, Melanie had brought Parker to the store to pick out a little gift for each of the Wallace kids and he gave each of them a beanie baby. Lauren carried her bunny around all evening while playing with Parker. At one point Parker came upstairs and said, “it’s cool, now I have 2 cousin Laurens!”
After dinner, the desserts came out but first there was a toast. Dad stepped up to the plate and commended John and Wendy for helping make this all happen. John then toasted Rob and also the act of true love that was being manifested in what was happening between myself and Rob. It was all so perfect.
Pre-Op Day -47 | Saturday, May 6, 2017 | 174.0 lbs
The next morning after coaching Parker’s teeball team, a few of the parents/friends asked me about what had happened Friday evening. By now, word was beginning to spread. Sometime early afternoon, Lori txted us and said she wanted to post something on the @RobWallacesJourney Facebook page when she got home from work that evening. I told her the same thing we’d been saying since the previous evening that whatever they would like to do, we were fine with. I hadn’t volunteered to be Rob’s donor for any sort of fanfare and would have been perfectly fine remaining anonymous, but also didn’t want to start putting up roadblocks or rules in the way of their excitement. It’s a tricky position to be in and more than anything else, Melanie and I wanted to experience the rest of the journey with the Wallaces, with their minds at ease that they had a donor locked in.
Then I realized that nobody from work knew about this, and neither did several circles of friends so I started txting people to give them a heads up. I didn’t want my closest friends to find out by way of Facebook, but knew it would be impossible to personally tell everyone. The messages started flowing in and the emails I got back from my coworkers were absolutely precious and I will treasure them forever.
Saturday evening there was a fundraiser for an organization Melanie is part of. Several close friends were there and many had seen the Facebook post. I was hugged many times this evening and was starting, I think, to better understand what I was taking on.
Pre-Op Day -42 | Thursday, May 11, 2017 | 172.0 lbs
Today, I (literally) ran home from work, jumped on my bike and rode back to work, put my car on the bike rack and drove home. I’d run home from work once/week for the past 3 weeks. It’s exactly 6 miles and was part of my attempt to lose weight before the surgery. I was actually very ok with the weight loss request from Dr. Emre because there were about 10-15 pounds that I’d been wanting to lose for quite some time. For the past month I’d been using an app called MyFitnessPal to track what I was eating, my exercise, and water consumption. Since beginning this tracking, I’d lost about 9 pounds in the process. My target weight was around 160-165 and I was currently at 172 as of this morning. Drinking a lot of water and cutting down majorly on saturated fat were the key, in addition to exercising whenever possible.
Pre-Op Day -38 | Monday, May 15, 2017 | 173.0 lbs
I received the most thoughtful letter in the mail today from Dyanne and John Rafal. They are such incredible people that I’ve had the pleasure of knowing for nearly 25 years. I loved that Dyanne hand-wrote me a letter. I can’t remember the last time I received an actual real letter in the mail.
Pre-Op Day -37 | Tuesday, May 16, 2017
Today, I was asked for the first time if I was scared about the surgery. It’s funny. I wasn’t. It was a bit surreal to think about it because I had never seen it performed and didn’t want to before it happened. That would clearly put images in my head that would be detrimental to feeling more at peace about what was going to be happening. It’s a funny thing how that can be. I clearly knew the surgeons were going to cut me open and remove a large piece of my insides, and I knew that the recovery was going to be painful and that I’d have a huge scar from this… But when I looked down at my chest and stomach, I couldn’t even envision the scar. I’d never had major surgery so really had no idea what any of it would feel like.
Another friend at work asked me jokingly the other day if I was just doing this to have the scar. It was a funny question at the time and was obviously meant in jest. That said, I was looking forward to having the scar. That scar on my body would be quite a badge of honor.
That simple silly question made me think about something much more meaningful… Two things, really. One was that I’ve always tossed around the idea of getting a tattoo but have never taken the plunge because I would only want a single tattoo… And the way my mind works, I would always wish I had gotten something else. And in trying to decide on a tattoo, I would always think there was a better option out there, so I would not do it. Because of that, I’ve never even seriously considered getting one because I know myself well enough to know, it would not end well. With this scar, however, I didn’t have choices or options. Like a piece of artwork, it was going to take shape organically. The surgeon would cut my skin where he needed to, would remove part of my liver, reconnect the plumbing, and stitch me up. Over the next few weeks as the incision healed, I would have a permanent reminder on my body of the decision to help a friend. At the beach, people may sneak glances, wondering what happened. That’s fine. If someone asks, well, what a story I will have to tell.
The second thing that silly question made me think about and realize is that for all of my adult life and probably earlier, I’ve always felt I wanted to do something great with my life. In the back of my mind I’ve always gently questioned my career choices and have always thought maybe there was something more meaningful to my presence on this planet. I’ve always wondered if I had made an incorrect choice along the way that led me to a point of following a routine that should have more meaning, more substance. These thoughts have been brushed aside since I met Melanie and we had our son. I’ve shifted to thinking more along the lines of my destiny is to be a loving husband and supportive father. I love playing and being goofy with my son. Last fall I started my coaching career, following in my dad’s footsteps before me. He coached me from the start of organized sports through about age 12 and I have always wanted to do the same. What I’m trying to get at is that the small thought way in the back of my head, wondering if I would ever do anything meaningful with my life in a big way… Well, I suppose this liver donation is a pretty big thing.
Pre-Op Day -32 | Sunday, May 21, 2017
Tonight, Melanie I created a painting for the Lyme Academy College of Fine Arts Arts Ball silent auction. Each color represented a member of each of the Wallace and Lee families and the technique represented the blending of our families.
Premise of the painting
The inside of a kaleidoscope are reflectors that are like mirrored walls. All the colors and shapes reflect off these walls. Your life is held together by these walls. When you get sick or something happens in your life, it feels like these walls are crumbling or falling apart, so the reflectors are no longer there… The kaleidoscope is not as beautiful anymore. But even going through all of that and feeling like life maybe isn’t as beautiful as a kaleidoscope is supposed to be… Something beautiful can still come out of that situation. The beautiful friendship or the love you may feel from the community or neighbor. Someone you don’t know may do something beautiful for you.
A kaleidoscope has inside of it a bunch of colored pieces of glass or other transparent loose objects – those are what are reflected. The rotation of them causes a motion in the materials so an ever-changing pattern. Each of our colors is like a piece of glass in a kaleidoscope being mixed together and swirled up.
We named the painting, “Live Friendly.”
Pre-Op Day -30 | Tuesday, May 23, 2017 | 171.2 lbs
A couple of people at work today were asking me about what’s involved in becoming a donor. I love that people are genuinely interested in this. It’s a topic that someone usually wouldn’t know anything about, including myself as recently as 4 months ago.
Pre-Op Day -29 | Wednesday, May 24, 2017
Lori’s mom posted this beautiful message on Facebook today. It will be my pleasure, Judy!
Ryan & Melanie – I’d like to personally thank you (with all of my heart) for helping to save Rob’s life and I am overwhelmed with your kindness. This is a huge gift of love. I pray that all goes well for Ryan & Rob. Thank you, thank you! Sending my love back to all of you. From Lori’s Mom – Judy Archambault
Pre-Op Day -28 | Thursday, May 25, 2017
Surgery is 4 Weeks from today!!
Pre-Op Day -27 | Friday, May 26, 2017 | 170.0 lbs
Melanie woke up with vertigo this morning so we ended up at the walk in clinic where she rested, got some IV fluids, nausea and dizziness medications and later in the day was resting at home, feeling much better. It was a bizarre and unanticipated way to start the day. My parents jumped right in and came over to help with Parker while I took Mel to the doctor and later, Mel’s parents came and relieved me there so I could get to work. Family. Always ready to jump in and help. This is our foundation. Melanie and I both come from parents who throughout our lives have been there for us. They’ve taught us the value of caring for other people and it is simply part of who we are. Today was a great reminder of where she and I both learned these values. We have both had great teachers in our lives in this regard.
When I got home from work, Susette had brought over a letter for me from one of her customers. Sue has cut this woman’s hair for 3 decades and I’ve never met her. She wrote me this beautiful letter and I was really moved not only by what she wrote, but also by the thoughtfulness of a complete stranger taking the time to think about what I’d be doing and to write a hand-written letter to tell me how it has made her feel. I love this. This is inspirational and if I never meet Ms. Rogers, I will still always know that our lives have crossed paths. Thank you for your thoughtful words, wherever you are!
I ate 4 pieces of pizza for dinner today. Immediately felt guilty and went out and ran 8 miles. So far in my journey, I was down over 10 pounds by watching calories, eating healthier (except for the occasional pizza) and exercising as often as possible. I had reached out to a friend who I’d seen lose a lot of weight and his tip was a simple one. “Burn more calories than you take in.” While surely there is more to it than that, so far in tracking my intake, exercise, water and so forth, it really was working. Thank you MyFitnessPal!
Pre-Op Day -26 | Saturday, May 27, 2017 | 170.0 lbs
What an evening. We were invited to a big cookout at the beach and we spent several hours with Rob and Lori and their circle of friends, all of whom were deeply invested in Rob’s journey. It was really nice to meet these folks, and I received several hugs and sincere thank you’s for what I’d be doing for their friend Rob. I never knew what to say in these situations. It’s funny, I’d just kind of clam up a bit.
This same day, Greg Allman, of The Allman Brothers, passed away from complications related to liver cancer. I have never listened to their music but Rob and I exchanged txts about this later in the evening and I’m sure this was a difficult story for Rob to hear about… Too familiar and too close to home. Lori gave Melanie an absolutely beautiful and thoughtful necklace, meant to calm someone who may be worrying.
Pre-Op Day -19 | Saturday, June 3, 2017 | 165.2 lbs
What a fun night at the Lyme Academy College of Fine Arts “Kaleidoscope” Arts Ball. This was the event that we created the painting for, to benefit the college in the silent auction. We received a lot of good feedback about the painting throughout the night and enjoyed explaining the meaning of it to anyone that asked. The bidding went back and forth on it for a little while until someone outright bought it for the “Buy It Now” price. It took a little while to figure out who had done this, as we had heard that several people were interested in it. Once we did, though, we were so moved. It turns out that close friends of Rob and Lori had purchased the painting with the intention of giving it to the Wallace family as a surprise.
Pre-Op Day -18 | Sunday, June 4, 2017
One of the folks who purchased the painting yesterday posted an eloquent statement online today. What I was most moved by was this:
“…I was fortunate to meet these people who restore my faith in the goodness of others. It exists…”
What I love about this is that if I think back to when this all began… The idea of calling to see if I could be Rob’s donor, it was a relatively matter of fact kind of idea… I knew I had the right blood type, but was I healthy enough? Was my liver divided in the right place? How long would the recovery be and would we be ok financially? All of these were practical, plain and simple questions. In my heart, I knew how fortunate I felt to be able to go forward with this process. My mind works in a very practical way, and there’d been this tug-of-war struggle between my heart and my brain to figure out how I felt about all this, and how to talk about it in a genuine way without sounding like I wanted any recognition for any of this. I’d maintained from day one that this was all about Rob, Lori and their family and his need for a new liver. I just happened to be able to help. The reason I love what Karen said is twofold.
- She didn’t say “this man,” but, rather, “these people.” I would never be doing this without the unwavering love and support of Melanie. Because of how many things I was thinking about all the time relating to the upcoming surgery, I hadn’t spent enough time thinking about what exactly Melanie was getting into. Things could go very wrong. Yet, from the first moment she and I discussed me calling Yale to see about being Rob’s donor, we both maintained the highest confidences and faith in the process that everything would be ok. That said, there was a lot on the line. And that’s why I appreciate that Karen said “these” instead of “this,” because in my humblest opinion, Melanie was in this every bit as much as I was.
- “…faith in the goodness of others. It exists.” We live in an era right now where sensational news headlines and tweets occupy a rapidly growing percentage of space in our daily lives. Terrorist activity in the world is rampant, the climate is changing, and everyone seems to always be at each other’s throats. Life is stressful, and sometimes dangerous. We have to be vigilant in places we once could calmly enjoy without a bad thought in our heads. In our hearts, though, we love and care for each other. We get so wound up in the daily routine that we can lose sight of that love. We can lose sight of the fleeting nature of life. We’re here for a blink of an eye in the cosmic calendar. Our legacies are our own to manage during our time spent walking on Earth. I speak often of my great grandfather. I was fortunate enough to know him well during my childhood. I’ll never forget his smile. He played the harmonica. He helped raise my father, and he was the neighborhood handyman. He loved to help people. Every time I left his house he’d sign off with, “See you in the funny papers.” My point of telling you this is to ask, how will you be remembered? I’ve made a lot of mistakes in my life. I’ve hurt people along the way and although I’ve never wanted to live with any regrets, I can’t say I do with complete certainty. But I do firmly believe that there is a reason behind all that we do and that the bumps in my road along the way have made me who I am today. There are things I would like to change about myself. But to read that a simple act of kindness that I’d soon be a part of, with full support from my wife, had in some way reminded another person that people do, in fact, care for each other, means more to me than Karen will ever know. Thank you Karen Fitzgerald!
Pre-Op Day -14 -6 -20 | Thursday, June 8, 2017 | 166.8 lbs
Wow, what a stressful day. Last night around 11:30pm I received an email from Janylet letting me know that she had great news! Our surgery had been rescheduled to this coming Wednesday, June 14th. WAIT, WHAT?!! Instant panic, as I had several time-sensitive projects going on at work.
After frantically and unsuccessfully trying to get in touch with Janylet before I got to work today (because if this was really the plan, then tomorrow would be my last day of work…), I eventually had to tell some people at work that my plans may be drastically changing. Then I talked to John about it, then Rob, then Melanie, then Janylet, then Rob again, then Janylet again, then Melanie again… We finally netted out on the surgery being moved to June 28th. Apparently there was a conflict on the 22nd that sparked all this.
In the meantime, Rob and Lori had George (older brother, donor) and Joe (younger brother, recipient) Manguilli over for dinner to meet with us. These guys were fantastic. Really remarkable guys, and they gave Melanie and me all sorts of good information about what to expect after the surgery. I’d be lucky if it went as well for me as it sounded like it went for George.These guys were a good resource for Rob, me, and also Melanie and Lori… They’d been through it, at Yale New Haven Hospital, and are both happy and healthy again. George said he felt exactly the same as he did before the surgery. It had been a year and half since they went through it, but he said it didn’t take nearly that long.
Pre-Op Day -14 | Wednesday, June 14, 2017
So, today could have been the big day if that first reschedule had held. But, 2 weeks from today was just fine. A friend from work left a small stone angel on my desk today. A gift for Melanie and Parker to carry with them during my surgery and recovery. Such a sweet thought, and so nice of her to even think to want to give us a little something, let alone put the time and energy into picking it out. Life is so busy. There are so many things going on all the time and to know that someone took a moment to think about how our family felt during this time was genuinely heart-warming. Thank you, Ann Marie.
Pre-Op Day -12 | Friday, June 16, 2017 | 168.2 lbs
The crew at Overabove totally got me today! I had a meeting with a coworker towards the end of the day and she suggested we go downstairs to see how someone was coming along with a project we were working on. It made total sense, until I rounded the corner and spied my son’s blonde hair downstairs. A couple more steps further and I could see the entire company assembled with balloons, snacks, drinks, cards and other decorations. I’m tough to surprise and was so blown away by what was happening. Melanie and Parker were there and what felt like hundreds of employees (there are not hundreds of employees at Overabove). This was a really touching moment and a vivid reminder of the support system we have around us. John gave an eloquent toast about how lucky he felt to have an employee and friend who was undertaking what I would be doing. I then bungled my way through trying to say a few things but I was really emotional and think I blabbered on for too long. What I was trying to say, and it was getting increasingly difficult for me to express, was the unbelievable amount of love our family was feeling and how this entire process was a vivid reminder to us how much good there is in people. The amount of support we had already received was really blowing us away.
Melanie and I are so lucky to be surrounded by so many thoughtful, kind, and generous people. It’s incredibly heart-warming!! Thank you, team Overabove!!
Pre-Op Day -11 | Saturday, June 17, 2017
We planned a cookout so my brother Dylan, his wife Sally, Melanie’s sister Michelle and all the kids could meet Rob and Lori, and also so our parents and all of us could spend some more time together. The weather didn’t quite cooperate and Rob and I ended up grilling in the rain, but with plenty of folding chairs, we circled up in the living room and spent the afternoon sharing stories. Rob shared that he’d gotten a call about a potential deceased donor match but had been advised by his surgeon not to accept it. I was glad he did this because if the organ was in decent shape, there’s a chance he just saved someone else’s life by holding out for my liver donation.
Pre-Op Day -10 | Sunday, June 18, 2017 | 165.0 lbs | FATHER’S DAY
Today was a great day. Father’s Day is one of my favorite days of the year. Every day, really, is like Father’s Day…Especially with a son like Parker. I’m so very grateful for everything I have, not the least of which is a son that I love an infinite amount. We didn’t have big special plans for the day, which was totally fine with me. We have so much fun as a family no matter what we do, and have a big list of things we’d like to get accomplished prior to the surgery. We had a nice breakfast together and then just kind of tooled around while also being productive. It was an excellent day!
One thing I have yet to mention is that the day after Parker was born (at Yale New Haven Hospital) he needed life-saving abdominal surgery. He lived his first 10 days in the Neonatal Intensive Care Unit and Melanie spent nearly the same amount of time in the hospital healing from postpartum complications. This time really solidified for us our faith in Yale New Haven Hospital, which factored heavily in my decision to undergo this surgery.
Pre-Op Day -8 | Tuesday, June 20, 2017 | 163.6 lbs
Last-minute trip down to YNHH for a quick meeting with the Psychiatrist. Kind of silly since I’d already met with the Psychologist, but I had to do what I had to do and I guess normally this appointment happens during one of the two days of testing. No new flags were raised and I was still deemed to be of sound mind heading into the upcoming surgery.
Pre-Op Day -6 | Thursday, June 22, 2017
With less than a week until surgery, today had my final pre-surgery appointments. Chest X-Ray, blood draw, EKG, meeting with Dr. Emre, a hospital tour and meeting with Janylet to go over some details for next week. The tour was a total blur – Janylet showed me the SICU (Surgical Intensive Care Unit) where I’d likely spend about 24 hours immediately after surgery, Family Waiting Room, the spot at which Melanie would have to bid me temporary farewell as I wandered down the hall to the surgery room and we went through the hospital floor where I’d be recovering for 5-7 days. It was completely surreal to see all the patients who had already undergone some sort of transplant and to know that I soon would be lying in a bed on the 10th floor, recovering from my own surgery. None of this seemed real.
Pre-Op Day -4 | Saturday, June 24, 2017 | 164.6 lbs
We met up with dear friends Vince, Kristy and their kids for breakfast this morning. They live in New Jersey and were in town for Vince’s nephew’s high school graduation and were able to sneak out for a quick meet-up. We’ll take any time we can get with these guys and make an effort to drive down to New Jersey at least once per year to visit them. Vince’s and my friendship goes back 35 years, to kindergarten!!
This was completely unexpected and it was mentally and emotionally rewarding to spend time with such good friends. I had been worried I might not see them before the surgery, and in the very dark and deep recesses of my mind, I worried about not being able to say, well, “goodbye,” in case something didn’t go right. I know this sounds terrible, but this is a reality of a surgery like this, and this is a friendship that is steeped in so much history that it was very important to me to be able to spend this time with Vince and his family.
Pre-Op Day -3 | Sunday, June 25, 2017 | 165.4 lbs
I cut the grass for the final time pre-surgery today. I took my time to do the edging, mow, and got out my leaf-blower to tidy it all up. I very much enjoy making our yard look good and it was a beautiful day to do it. We had all our family over for a cookout later in the evening, sat around the fire pit and enjoyed some final family moments all together, sitting out in the yard, before the big day coming up. Melanie and I are so lucky to have such supportive family living nearby. Our dog Peaches would be well cared-for by my parents, Mel’s parents would be staying at our house to take care of Parker, which he was very much looking forward to (any chance to sleep on an air mattress is a great day for Parker!) and all around we knew we were all set because of the generosity of others. Melanie would have a very stressful time while I was in surgery and then recovering in the hospital, and our family had all rallied together to help take care of all the details in between so she could focus on being there for me. We feel very loved these days!
Pre-Op Day -2 | Monday, June 26, 2017 | 167.8 lbs
We got up today and headed to Napatree Point in Watch Hill, RI. Unreal. Not crowded, easy to get to and the beach was incredible. We dipped our toes in the icy water and collected lots of beautiful rocks. It was a perfect day – sunny and 75 degrees out, my ideal temperature. We ate lunch outside at Bay Street Deli and then Parker rode the Carousel several times. From there we went home, got changed and headed to Rob and Lori’s house for dinner and a dip in the pool (for Rob, Parker and me…because Parker wanted to, and because Rob is a good sport). We had a delicious steak dinner and dessert (note: in hindsight, I strongly recommend NOT eating steak two days before surgery if you are thinking about being a donor). This was my last meal before going on a clear liquid diet. We chatted about preps for the big surgery day, coming in 2 days!! Rob would have to arrive at the hospital at 6:00am, I didn’t have to be there until 7:00am. We hoped we’d cross paths somewhere along the way.
Pre-Op Day -1 | Tuesday, June 27, 2017 | 165.8 lbs
Today was a day to finish final preparations before being incapacitated for a while. We took it easy and just spent time together as a family. Went to Starbucks together (a bit of a family tradition) for the last time before surgery and (this is kind of funny), Melanie and I went and got pedicures. Parker came too and he sat on Mel’s lap. This was my first one ever and it was a funny experience all going together. There was a fair amount of unspoken nervous energy flowing through Melanie and me all day. As prepared as we were for what was about to happen the following day, it was still a little nerve wracking. Also, I was quite happy to have shed 15.6 pounds through diligent use of MyFitnessPal, eating better food, and lots of exercise (24 runs for a total distance of 109.62 miles since that first day of testing). Hopefully this would make Dr. Emre’s job a little easier. Also, I was starving after consuming nothing but clear liquids all day.
Before bed, we made some preparations for the following morning. My parents picked up the dog and Melanie’s parents came over to sleep so they’d be there in morning when Parker woke up after we’d left for the hospital. We tried to go to bed early and of course that didn’t work out very well. But, we had our clothes laid out and were ready for the early morning alarm.
1 thought on “Living Liver Donation Surgery Journal Part 1 of 3: Pre-Operation”
The risks of living liver donation also are low, but experience with this procedure is more limited because it was introduced into medical practice more recently than kidney donation. The first living-donor liver transplant was performed in 1989.