Introduction
This is the third in a 3-part journal that documents my experience as a living liver donor at Yale New Haven Hospital during the summer of 2017. The 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. I found being a living liver donor to be an incredibly rewarding undertaking for so many reasons that will hopefully come through in my writing.
Post-Op Day 6 | Tuesday, July 4, 2017 | 170.0 lbs
Similar to the first few days in the hospital after the surgery, the first few days home from the hospital were a whirlwind of adjustments, thoughts, struggles, and adaptations. I was completely overjoyed to see my son, who I missed dearly while in the hospital. I gave him the biggest hug I could muster and loved the sign that he and my mother-in-law made for me to see on our fence when we arrived home.
I couldn't do a lot. Everything was a struggle and there were lots of very uncomfortable naps, late-night tv shows (thank goodness for American Pickers marathons). and sleepless nights. I was in a lot of pain - both in my abdomen and in my lower back, which was struggling to hold up my body. I was basically powerless against the need for naps. Any amount of physical activity wore me out but I made sure to spend as much time on my feet as possible.
People kept bringing us delicious meals!! The meal train that was set up for us was so much appreciated and I didn't miss hospital food in any way, shape or form. Although, I had come to really like Ensure drinks during this process. I had to be careful with a few food items. Had to be sure to carefully wash fruits and vegetables and avoid eating at restaurants for a while. My immune system was never compromised so I didn't have nearly the same types of restrictions as Rob (my recipient) did.
Post-Op Day 10 | Saturday, July 8, 2017 | 163.8 lbs
Rob got to go home today! I also received 3 beautiful cards in the mail from the Tonino kids, had breakfast with John & Dyanne Rafal and had visits from Vimala and Guy as well as my parents. Also, Judy Donato dropped off a delicious dinner for us. What a day. It was long but so filled with nice time with close friends and family.
The past few days at home had been, well, great but also exhausting. I couldn't seem to find anywhere comfortable to sleep. I usually went to bed in one recliner, woke up within 1-3 hours (usually 1), then tried our son Parker’s bed for 1-3 hours (usually 1), then tried a different recliner for 2-3 hours (usually 2). By then it was 5:00am and the sun was coming up, making it impossible to sleep any more. The main problem was my back muscles were working overtime so by early afternoon they were worn out, exhausted. A combination of tiger balm, massage, and a heat pad helped a little bit but really I needed my core muscles back to tackle this. Those were slowly, very slowly getting stronger. Today when I coughed I felt like more of a gerbil than a mouse - a step in the right direction! My incentive spirometer was a frustrating little device but there have been a couple occasions where all 3 balls have risen to the top. I kept working on it.
Each time I visited with people who hadn’t seen me yet, they seemed alarmed by how un-sickly I looked. I was masking a lot of pain and was trying to dress like a human being rather than a hospital patient. My incision had started to ooze in a couple spots where the skin hadn’t healed yet and the glue was starting to let go a little bit, so I’d been applying band ades like patchwork along the incision line. My back was hurting all the time and I was all around still really sore… But I didn’t want people to know that. It was important to me that people didn’t regret coming for a visit. People were genuinely proud of me and pretty amazed at what I did and the last thing I wanted them to feel was uncomfortable trying to celebrate that with me. In due time I would feel great again.
Also, I drove for the first time today!
Post-Op Day 10 | Sunday, July 9, 2017
We went over the Wallaces today to see Rob at home for the first time. We had a really nice visit, rehashed our war stories and enjoyed the opportunity to eat outside, breathe fresh air, and spend time together as families. It was great seeing Rob back hom again and in all honesty, he seemed to be doing better than I was. He was walking much more comfortably and was moving around better than I was. We both were constantly tired though and naps were unavoidable.
Post-Op Day 14 | Wednesday, July 12, 2017 | 159.2 lbs
Wow, two weeks ago, I was about halfway through the liver donation surgery. It’s incredible how much happened since then. I’d been home for over a week now and every day could feel myself getting stronger and less sore. When I first came home I could hardly twist my body, and laying down on a bed was an epic ordeal. As soon as I got into a flat position everything hurt, and getting back up was only possible using the technique the physical therapist taught me in the hospital. It still wasn't comfortable to lay flat on a mattress, but at least now I could lay myself down unassisted.
This past Monday, Rob had his first follow-up appointment since he came home, and the pathology on his removed liver showed three new cancerous spots. He'd had maybe a year to live, had the surgery not taken place. It was so rewarding for me to learn of this kind of thing - it reinforced that we really did help this family keep their dad and husband. I loved that. I did remember all the way back to the evaluation phase - a question about how i would feel if this all didn't work out, or if something went wrong, how would I feel. I knew that no matter what, I would feel good about trying to help. But, knowing what Rob's outcome would have been definitely made me think even more about what transpired.
Post-Op Day 27 | Tuesday, July 25, 2017 | 159.8 lbs
It’s unbelievable to think that surgery was 4 weeks ago tomorrow. I’ve been slacking in my journaling big time. I had another follow-up appointment this past Friday and everything was right on track. Dr. Mulligan didn’t have any concerns about my progress, and the incision was healing so well! At the appointment, I asked Dr. Klemen (one of the residents and a guy I was very fortunate to have on my team throughout this process) to take a look at the very top of the incision because it seemed it was maybe getting a little infected. He had me lay down, took a Q-Tip and removed all that gunk, cleaned it out and promised me it would heal quickly. He then started peeling off the skin glue, and joked that he was surprised I hadn’t started picking at that stuff and the scabs. I laughed at him, as if I was going to pick at a huge incision in the middle of my body. Sure enough, though, as he pulled off the glue, all the scabs came right off to reveal that the incision was almost completely healed! That glue is amazing stuff! It was holding the scabs in place even though the scabs had detached from the skin beneath them from being healed up.
Over the past couple of weeks, we had dinner with Rob and Lori a couple times. Rob was healing well - just dealing with ongoing hand numbness and the big cocktail of pills he had to take. I was lucky - I was down to just Tylenol 3x daily. No need for anything else at this point - just kind of keeping the incisional pain under control. I’d slept through the night a couple of times and that was very helpful for how I felt the next day, obviously. Melanie and I also went to see an Ed Sheeran concert at Mohegan Sun Arena!
This Saturday is the LYSB Midsummer 5k at the Old Lyme Midsummer Festival. Melanie, Parker and I were all registered, as were mom and dad and several other people we know. This is a 5k that last year I ran the same course in 21 minutes and 24 seconds. This year I set a very aggressive goal of 1 hour for myself. It seemed ludicrous. But, I had to pace myself and so far when I had tried to jog a few steps, it felt terrible. Things inside felt all jiggly and whatnot. Dr. Mulligan said this would be normal for a while. Then as the liver fills itself out, things would move around and I'd feel different things. He said over time I’d get used to the new feelings and they would become my normal. Pretty soon I needed to force myself to jog for a while because part of my problem was my leg muscles hadn’t been used enough in the past month. That and the right side of my abdomen was still pretty swollen and my abdominal muscles weren’t healed up yet. My core was definitely getting stronger though. I’d been able to sneeze, cough, blow my nose and other things like that which require the core muscles to be functioning. For the past 2 days I’d had a little bit of a cold and so I’d been exercising those muscles a lot!
I still hadn't slept overnight in the bed yet… Still sleeping in recliners downstairs. I napped in the bed a couple times and would probably try to sleep upstairs again soon. I just didn’t want to keep Melanie awake by tossing and turning or getting up several times.
Post-Op Day 28 | Wednesday, July 26, 2017
It’s hard to believe that 4 weeks ago today was the day of surgery. I was feeling really good this morning so I walked Peaches about 1.7 miles. When I got back, Melanie was bringing Parker to play with a friend at the playground, and I had some errands to do. So I got myself ready and drove to Old Saybrook. I parked on Main Street near Starbucks and set out for a long walk at the fastest pace I felt comfortable walking. I walked all the way down Main Street and kept going to the Causeway, across that and then all the way back. It was a 5.77 mile walk - and was 3.77 miles longer than my previous longest walk since the surgery. I felt good the whole time, although the couple of times I tried to cross the street at a faster pace, or pretend I could jog - that didn’t feel good. I think I need to keep pushing myself on the pace of these walks to try to build back up my leg strength so I’m not battling with that on top of the endurance and the weird abdominal feelings. By the end of the day, I’ve clocked nearly 9 miles walked. Loving that I could do that and still feel ok. Over 18,000 steps for the day!
Before I went for the walk, I met up with a woman named Alison from Donate Life, Connecticut. I had reached out to the organization in the hopes of getting a t-shirt, car magnet and maybe a flag to put on the house. She was more than happy to meet up with me, gave me a goodie bag and while we were chatting she learned that Rob was my recipient, and knew all about him. She also knows George and Joe Manguilli. Small world. She said there are all kinds of volunteer opportunities and I want to learn more about that. Anything I can do to help spread the word about the possibilities of saving life through being a living donor, I want to see what I can do. Heck, 4 weeks ago I was being cut open and today I aggressively walked nearly 6 miles. The human body is incredible. I am going to keep pushing myself too. I want to recover as quickly as possible, and still have the half marathon at the end of October as a definite goal. I will complete that race no matter how long it takes me. Ideally, I will be able to jog at least part of it. That is the real goal. Not to walk the whole thing, but to get my pace above a walk for as much of it as possible.
Later in the evening, We went over to the Wallaces for dinner. Casual - burgers and that sort of thing. We sat outside. Parker did an awesome dive into the pool, then jumped in again then had to get out because he was freezing. We’ve had a bit of a cold spell for the past 2 days, although the 75 degree weather with a slight breeze this morning was perfect for my walk. While we were outside, Judy Donato showed up, Lauren got back from a vacation with a friend, and then Julie and Shane O’Brien showed up! I love this circle of people. When we were departing, Shane told me he’d love to get together to walk sometime. Rob and I made plans to walk the Niantic Boardwalk Friday morning as well. Life is good. People are good.
I need to make a statement about Melanie. This journal has been so much about me and how I’m feeling, and I really want to put down into words how tremendously supportive she’s been throughout this process. She’s helped me in so many ways and not always big noticeable ways. She knows I can’t get down on the floor to play with Parker right now, or do a lot of the things I normally do with him. It’s hard for me to laugh sometimes because I am so tired, and it’s hard for me to be goofy. She’s really stepped up in making sure he’s entertained, occupied, has fun things to do and so forth. When he needs something, she jumps to help. She’s taken on so much of this that I was recently able to do and I feel very badly that even these little things, I need her help with. Parker has been so understanding of my situation. It’s amazing, really. He continues to hug me gently. He doesn’t ask me to pick him up or get sad that I can’t. There have been things that normally he would ask me for and instead he’s asking mommy. I really appreciate him also, and I really hope I can get back to normal as quickly as possible for all of our sake. I miss doing the little things with him that I love doing. And I know this has been a lot on Melanie. Even my sluggish movements, fatigue, etc… It’s a lot for her to deal with. I am not as happy and upbeat all the time. It’s hard for me to be when I am feeling so very exhausted on the inside. It’s all part of the healing process and it takes time. I just hope this phase goes by as quickly as possible.
Post-Op Day 30 | Friday, July 28, 2017 | 157.8 lbs
Today, I went and picked up Rob and we walked the Niantic Boardwalk. Prior to this, Rob’s longest walk was one mile, so he didn’t really know what to expect. I kind of knew he’d be ok to go a little farther just based on my own past week or so of getting out and walking farther and farther. It went well. There was a nice breeze coming off the water and we made it a mile and a half before Rob wanted to take a little break. Then we finished up for a 2.5 mile walk! It was nice to spend some time together and get some exercise.
Later in the day, I pulled off the last scab on my incision - at the very top. This is the same section that at my last appointment (a week ago), I asked Dr. Klemens to check if it was infected. He knew what was going on and had pulled out a gooey scabby situation that was pretty gross, but advised me to leave a gauze pad on it for one night and then it would start healing up nicely. He was spot on. And, now, the scab was ready to come off. I wanted to see what was under it and help the healing if possible, and right now the skin is looking pretty well healed up. I did find a little piece of a stitch sticking out of the new skin and pulled it out painlessly with tweezers. That freaked Melanie out a little bit but it was no big deal ha ha.
Post-Op Day 31 | Saturday, July 29, 2017
This morning was the LYSB Midsummer 5k run to support the Timothy Buckley Foundation. Over the past few months I’ve come to know the Buckleys and I would not have missed this race. It turned out to be such a fun event. We ran into so many people we know, and many from our new circle of friends. I walked with John Visgilio for a while, the first time I’d seen him since the surgery. My goal for the race was less than an hour. But, I really just wanted to participate. We started out walking. Parker was itching to run but it was too crowded at the beginning. After it thinned out a little bit, he was able to run a little. Mel pushed the stroller. At one point, I decided to try to jog along next to Parker. Shockingly, it felt ok. Remember, a week ago or so, I tried to jog about 10 steps and it felt horrible. But it felt so… ok, that I kept jogging a little bit.
Then I would walk and talk to Mel or Mom & Dad or whoever else we were near. Parker kept running then taking a break and riding in the stroller, etc. Each time Parker ran, I jogged along with him. Sometimes I jogged and asked him to run with me. I did a lot of walking but mixed in a fair amount of jogging and it felt totally fine the whole time.
We crossed the finish line together and Mel and I shared a nice hug at the end. Final time - 45:15…
I was very encouraged by how I felt jogging. I think I might be ready to go out for some light jogs and start to get my heart rate up again and get some actual real exercise! When people ask me how I’m feeling, my response is that I am feeling pretty well… Better than I thought I would at this point but I still get really tired. And that mentally, I am wanting to get back to where I was before as quickly as possible. It’s true. I’m definitely able to be more active than I was able to be a week ago. That said, the increased activity wipes me out and I have to take naps. But, I had to nap with less activity over the past weeks, so, in my estimation, this means… progress?!
I went home from the 5k and crashed for about an hour and half. It was a great nap. Not too long after I woke up, a friend showed up with her two kids. We all agreed to walk down to the Midsummer Festival after meeting up with her husband, and so we walked about another 2 miles doing all that. Parker rode in the stroller and Mel and I took turns pushing him. He was beat from all the running in the 5k and after getting his face painted like Spiderman, he dozed off in the stroller on the walk back. When we got home, I crashed for another nap - this one about 30-45 minutes.
A few hours later, we headed up to Guy and Vimala’s house for their annual Hot Dog party, and I was on my feet there for a few hours until after the fireworks were over and Becky gave us a ride home. Parker went to the fireworks with Mom & Dad and we all met up back at the house.
This was a perfect night to try to sleep in the bed for the first time. I fell asleep upstairs, laying on my back, and I thought it was going to go well… Until I woke up feeling sore at 1:30am. Ugh. Tried to turn on my side, then the other side and nothing felt right so I headed back downstairs to the recliner. I hope I can be more successful soon. I really want to be sleeping upstairs with Melanie again!
Post-Op Day 33 | Monday, July 31, 2017 | 159.2 lbs
This morning, Melanie was bringing Parker over to a friend’s house to swim in his pool. They live kind of nearby so I decided to meet them there and to travel on foot. Since the little bit of jogging I did Saturday morning felt ok, why not try jogging over there? And since their house is only really less than 2 miles away from ours, why not extend that out to a little over 3 miles? So I put my gear on and headed out for a jog. My first jog in 47 days, since a 6-mile run on June 14th that I averaged 7:31 minutes per mile for a duration of 45:07.
Carrying the momentum of my Saturday walk/jog into this attempt to run, it was a huge success. I had no real idea what to expect. The first quarter mile, I felt like I was maybe hunched over a little bit and tried to straighten myself out. The first mile went by at a pace of 9:15/mile and I liked the sound of it when that was rattled off in my ears by the Map My Run voice. As I started to straighten my body out and fall into my rhythmic breathing that usually paces my runs, I rattled off the next two miles at paces of 8:46 and 8:33/mile respectively. The final 0.42 miles I did at 8:37/mile. Total workout duration was 30:18 and I could not be happier with how it went.
My personal goal and something that is definitely going to happen is that I will be completing the Essex Steam Train Half Marathon on October 28th, 2017 which will be Post-Op Day 122 and exactly 4 months to the day after my surgery. I’ve mentally prepared myself to walk most of it however after today’s jog, and how I felt was a massive first step towards thinking I might actually be able to jog it. My biggest struggle today was that I could not breathe as deeply as I normally breathe when I run. This will come with time. The best part was that my abdomen felt totally fine. No jiggling, no discomfort, and no pain. Huge Win!!
For the record, the last half marathon I ran was the Bristol, RI Independence Half Marathon on 7/2/16, which I completed in 1:46:03 at a pace of 8:03/mile. Time will tell how this race that’s 3 months from now will go!!
Post-Op Day 35 | Wednesday, August 2, 2017 | 158.8 lbs
EDITED
Surgery was 5 weeks ago today!
Today was a fun day with a lot of physical exertion. The day started with Mel, Parker and I walking Peaches down to the Lyme Academy and back, for a 1.17 mile walk. Then, Rob came and picked me up and he and I walked the Causeway in Old Saybrook - 1.53 miles. After that he and I grabbed a cup of coffee at Ashlawn Farms in Old Saybrook. When he dropped me off, Mel and Parker were out doing some errands and I had my running clothes on already from the walk… so I went for a jog. By now it was like 80 degrees and really humid out. I jogged down Lyme Street to McCurdy Road, 156 to Smith Neck - to the boat launch… then back home. I ran the whole way there but on the way back had to stop and walk several times. I did run the final half mile of the 5 mile jog… and completed it at a pace of 9:07/mile. Definitely slower than I would have liked, but I had already walked over 2.5 miles on the day and it was really humid out. I relaxed for a while and then for some strange reason decided to do some yard work - I’ve been working on clearing out a little section of the yard to make room for the chickens we’ll be getting in a couple weeks. I definitely was running on fumes doing that project and thankfully it started raining to force me to stop. On the day, I walked 18,400 steps and have walked/run 11.25 miles. All with only a small cup of coffee and no naps. I’d say my liver is just about done regenerating…
Because of my increased ability to exert myself and my need for a nap beginning to decline, I’ve started thinking about when I might go back to work. My next appointment with Dr. Mulligan is next Friday, and I emailed John to suggest that if the hospital thinks I’m ready, I could probably go back to work for half days the following week or two and then back full-time. I just don’t want to take advantage of Overabove’s flexibility and generosity. I know I did a pretty remarkable thing, but I also don’t like taking advantage of people. We’ll see what happens.
Tomorrow, we’re heading to Newport to spend the day there together and then stay the night and meet up with some friends who are in town from California. This will be our first chance to meet their son.
Post-Op Day 38 | Saturday, August 5, 2017 | 159.8 lbs
Today, I went for a run that was more of a run than a jog. I re-did the 5k course that I mostly walked one week ago today. After a couple jogs in between, I finally felt more like I was running again. I ran the same course today (3.13 miles) in 24:42 with an average of 7:53/mile. I was shocked when my headphones told me my first mile was less than 8 minutes, and then I just tried to stay at that same pace. My pace ended up being very consistent for all 3 miles. This was a really, really encouraging outing.
Post-Op Day 39 | Sunday, August 6, 2017 | 162.4 lbs
Mel and I brought Parker and Sofia (his cousin) to Hammonasset Park today to check out the Maeg’s Point Nature Center and then to Hammonasset Point - the shelly, rocky beach on the East End of the point. Parker had a great time looking for tide pools and we found that there were tiny little crabs under so many of the little rocks. We were getting a kick out of turning these over and finding them. I realized later on that I had spent about an hour very carefully climbing over the many rocks, bending down to look for crabs, shells and other treasures, and that was a lot of twisting, turning and bending, and none of it was overly uncomfortable!
Post-Op Day 40 | Monday, August 7, 2017 | 158.6 lbs
Melanie brought Parker with her to a meeting this morning and I went for a run in Old Saybrook. I figured - why not see what I can do?! So, I set out for an 8-mile jog. The weather was perfect for running - a little cool and cloudy. A little bit too much humidity but not too bad. I made it 3 miles before my first stop to walk for a little bit. I wanted very much not to walk but the thought had crept into my head and I couldn’t push it out. This is part of the endurance I need to build back up - the mental endurance in addition to the physical endurance. I walked several more times throughout the walk, but I was able to power through the final 1.5 miles without stopping. The final run was 8.05 miles in 1:11:23 at a pace of 8:51/mile. Overall, I’m very happy with how this went. It could have gone better but it also could have gone WAY worse. After all, I’ve only gone for 4 actual runs since coming home from the hospital!
Surgery Post-Op Day 43 | Thursday, August 10, 2017 | 158.6 lbs
This morning, Rob came over and we went for a 3-mile walk around the center of Old Lyme while I pushed Parker in the stroller. One thing I really like about Rob is how much he tries to include Parker in conversations and acknowledge his presence, which can be tough to do sometimes when adults are trying to have conversations and whatnot. He is very cognizant of the fact that Parker may feel left out and it’s charming that he’ll stop and talk to Parker mid-thought. We talked about all sorts of things and never had to stop and rest, which was great. I think this was Rob’s longest walk so far and since I tend to walk pretty fast, I may have inadvertently pushed his pace a little faster than he may have planned also 🙂
Then, I headed into work for a meeting - my first time to Overabove since leaving for the surgery. It was cool to see some folks that were in the meeting and I will see everyone tomorrow at our company picnic.
Later in the day, Melanie and I brought Parker over to the Wallaces to take a quick dip in the pool.
Surgery Post-Op Day 44 | Friday, August 11, 2017
What a busy day!!! We all headed down to New Haven for what will probably be my last in-person appointment with the surgical team for several months or a year. It was supposed to be a FaceTime meeting but since I had a suture that had poked through my scar, Janylet suggested I come in to see Dr. Mulligan. Almost comically, he came in, got a whole suture kit out and used a pair of tweezers for a millisecond and the stitch just fell out. I felt a little dumb, since there had been a couple other pieces like this that I had just pulled out myself. But when I had tugged on this one at home, it didn’t come out as easily. Soooooo that was silly. But, then we had a whole great conversation about how I would like to be a resource for them to use and for other potential donors or approved donors to reach out to with questions about how my process went. I really want to be involved in helping to spread the word about the possibility of being a living donor, and can’t think of a better group of people to brainstorm with. Dr. Mulligan was very interested in my thoughts and I am hopeful that this goes somewhere. Even if a couple potential donors send me an email or txt or something, I’d love to be there for someone the way George Manguilli was there for me. He was such an amazing resource for me and I want to give back to someone like he did for me.
On a very positive note, Dr. Mulligan gave me the all-clear to eat shellfish, start doing some sit-ups and crunches, stretching, and to lift more than 10 pounds (I later lifted Parker several times and have SO many more to make up for all the times I have wanted to and couldn’t). I have to go back for bloodwork again next week because a couple of my liver function numbers were elevated and I’ll probably wait to see how that goes before having any alcohol. Dr. Mulligan said I could have some with no problems but I don’t mind waiting a little longer. After all, I haven’t had a beer since January and have only really wanted one maybe once - on a hot day pre-surgery after mowing the lawn.
From there, we headed to the Overabove 15th Anniversary Picnic where Melanie, Parker and I were able to see everyone and say hi, field a million questions about how I am feeling, what the surgery was like and anything people could think to ask. It was awesome. I love being able to stand there, just over 6-weeks post-op and feel healthy and not look sickly. It was so good to see all these amazing people who have been there with us in spirit, we’ve been in their prayers and now that I plan to go back to work part-time for a couple weeks starting next week, can start to think about me as being just Ryan who is back at his desk again. It’s crazy and cool how quickly this all went. That’s another message I’d like to help communicate to potential donors. Yes, you’ll be out of work for a while, but you will not feel terrible for very long!
After the picnic, we rushed off to Melanie’s cousin’s 50th birthday party in Waterford. It was a fun time and several people there were very curious about how I was feeling and interested to hear all about it.
Home to bed, and tomorrow off to a surprise 25th Anniversary party for Dennis and Kathleen Goebel. Really looking forward to that. This will be the first time I’ve seen Dennis since the surgery too and he’s a great friend who has had me in his thoughts throughout all this.
Post-Op Day 47 | Monday, August 14, 2017 | 159.0 lbs
Big day today. Back to work. I’ll be working part-time for the next 2 weeks and then back for good after that. The first day went well and it was like riding a bike. Jumped right back into a project similar to one I’d been working on previously.
My recent bloodwork has shown some elevations in my liver function tests so I’ll be going for more bloodwork this week sometime. One of them is elevated but trending downward ever since the surgery - and I think that one indicates the liver is healing. The other 2 I’m not sure what they mean and are only slightly elevated. I can’t feel anything wrong inside me. I feel stiffness through the length of the 12” scar but as Dr. Mulligan suggested, this is the muscles healing back together and they need to be slowly stretched back out, or else I’ll risk them being tight forever probably.
Post-Op Day 57 | Thursday, August 24, 2017
This evening, I set out around 8:15pm for an 8 mile run. I completed the loop in 1:04:29 with an average pace of 8:03/mile. I knew I’d done this loop several times before so I looked back in Map My Run and the last time I did it was in May, 2014 when I was in the thick of marathon training. I ran it that day at a pace of 8:19/mile.
As for how I’m feeling… I have lingering stiffness where the incision was made but no other pain anywhere related to the surgery and I would say I feel 100% other than the stiffness I mentioned and the normal aches and pains of life.
Post-Op Day 58 | Friday, August 25, 2017
After work today, we revisited Napatree Point in Watch Hill, RI. It was almost 2 months to the day since the last time we were there, which was a little family trip we took 2 days prior to my surgery. That day, I ran on the beach with Parker and Melanie, we played, goofed around and had a nice relaxing day at a beautiful beach. Today, we did the same. I raced Parker, giving him a huge head start before I went sprinting down the sandy raceway to…...almost beat him. We splashed in the chilly water and hauled all our gear back to the car.
Point being, I was able to do all this. All the things I did 2 months ago before being cut open, having part of my liver removed, and all the recovery since then… Not much had changed about our experience on the beach today vs. 2 months ago. Although, Melanie commented that my scar made it look like I’d been bitten by a shark. I’ll take the alternative actual cause of it any day!!
Post-Op Day 59 | Saturday, August 26, 2017
What an adventure today. The weather was beautiful so we took Peaches for a hike at the Lohmann Buck-Twining Preserve off Riverbend Rd. in Old Lyme. It’s a preserve that I’ve wanted to hike several times and we just haven’t had the time or have chosen other places. Also, it’s pretty steep so until Parker was big enough to traverse some of these difficult trails, it was probably for the best that we waited.
After about 45 minutes of hiking with Peaches off leash, we heard a rustling in the leaves and looked up in time to see her darting into the bushes at full speed. More leaf rustling and then nothing. She’s usually very good about coming back when we call her or whistle but she was not coming back. We looked everywhere. We looked where she left the trail, we backtracked, we continued on the trail. Nothing. No sounds, no barking, nothing. We kept calling her. We walked further on the trail thinking she would meet up with us. She was gone. She seemed to literally vanish into thin air.
This preserve is pretty incredible with its terrain. Very steep, craggy, big rock outcrops, and more magnificent features. Unfortunately, all those features made looking for a lost dog immensely more difficult. We split up and went opposite directions on the loop. We tried a different trail. Melanie and Parker took the car and met me on a different road after I branched off on yet another trail. I think all in all we did about 7 laps around the roughly 1 mile loop. I was on what I had tiredly decided would probably be my last for the day when Melanie called me to tell me she found Peaches. She’d just posted something about it on Facebook while sitting near where Peaches had disappeared into the woods when there she came trotting up the trail, without her harness, and with some scratches/irritations on her belly. She was so excited to see them and I sprinted back up the hill to meet up with them. I carried her all the way to the car, where she lapped down a substantial amount of water, tail between her legs in fear, and then laid down for the car ride home.
Lesson learned, no hiking with Peaches off leash. And, as a sidenote, as part of my recovery I have now hiked/run 6 miles with nearly 1,400 feet of elevation gain, and not a single amount of soreness where my incision was made. Two pieces of good news for the day!
Post-Op Day 61 | Monday, August 28, 2017
I’m officially back to work full-time today. It’s been quite a journey over the past 2 months. I was completely out of work for 7 weeks, and back to full time after 9 weeks out. It’s been very, very nice to spend so much time with my family. We’ve been able to do all sorts of things on my road to recovery and I think today is going to be a difficult day for all of us. My mind has been in a million places over the past 9 weeks and I’m glad I started back to work part time so I could ease my brain into working on work again also. It may sound silly but this is a real thing. It’s almost like a kid going back to school after having the summer off except with a lot more responsibilities during the time off, and with a very important recovery effort as the central focus.
I’ve worked very hard to get my body back to where it was before the surgery and I’m getting there. I still have a little ways to go, but the runs I have gone on recently have really helped set my mind at ease that physically, I did not take a big long-term step backwards. Some of the runs where I have stopped to walk have been the age-old runner’s battle with the mind about taking a break. Mental toughness is part of physical recovery and I’m getting there on that front as well. As for toughness to sit in a chair all day at work, with minimal breaks, we’ll see how this goes. I work for a great company who has been hugely supportive of my decision to donate my liver to Rob Wallace, and I owe it to them to do my very best, just as I did before the surgery.
A lot has happened over the past 9 weeks. We got chickens, almost lost our dog in the woods, traded in one of our cars and got a minivan, surprised my best friend with a pop-in visit to New Jersey, Mel and I went to an Ed Sheeran concert and met up with friends in Newport, brought Parker to the CT Science Center and so many other things. There have been terror attacks in other countries (Spain and others), a Navy war ship collided with a merchant vessel, a neo-nazi rally turned deadly on our own soil, a hurricane (Harvey) slammed Texas and there’s been catastrophic flooding.
So much family time, so many changes and yet the biggest thing of all is that we were able to, as a family, save someone’s life. The recovery has largely overshadowed this for me. I know deep down that this was a very big thing to do, and Melanie deserves all the credit she has been given when we’ve bumped into various people who’ve reminded her of this. Parker too. He’s been so incredibly understanding of my physical limitations and has, without a hitch, found other ways to play with me, interact with me, and cuddle with me so it hasn’t hurt. My family is brave. We have been resolute, and we are incredibly grateful for all that has happened around us, for us, and with us as part of this journey. All that political junk I just wrote is very real, but being part of something so deep-rooted in genuine love has changed the way I think. It’s hard to focus on things that don’t really truly matter anymore. Each moment of our lives could be our last. I could have breathed my last breath while undergoing surgery to help someone else. The thought barely crossed my mind leading up to surgery but it was a real possibility.
Anyway, back to work full time today.
Post-Op Day 68 | Monday, September 4, 2017
I cut the grass for the first time since before surgery. So many people have helped us out over the past few months and lawn care was one area that everyone knew we’d need help with. It sure did feel good to be out there pushing the mower around. I had no issues at all doing the edging, walking behind the mower and pushing it all around, and then using the blower to do a final clean-up!!
I still haven’t had a beer yet. Not since January I think...?
Post-Op Day 74 | Sunday, September 10, 2017
Today, I mowed the lawn and then took my 4-year old son for a 2-mile hike on a pretty hilly trail. I’m noticeably less stiff in my incision area than I was even a couple weeks ago. There are several little movements I can do where I don’t even feel the incision anymore. Dr. Mulligan had advised that some of the new feelings would become my new normal and it’s hard to say if that is what is happening or if things are just continuing to heal. The scar itself is still pretty dark and sometimes reddish in color. There are a couple small sections, maybe ¼” long that have faded to my skin color and are very nicely healed. I wonder if the rest of it will ever look that way.
One thing I wanted to be sure to document is one of the most common questions I get when talking with people about the surgery I underwent about 10.5 weeks ago… Well, maybe it’s not a question but more of a comment or admission of naivete. And that is, many people don’t know anything about donating a portion of liver to someone. Admittedly, I didn’t either before i first started looking into what it would take to be Rob’s donor. I was just talking to someone yesterday that didn’t know I had done this, and when I started telling him, the very first question was whether I have half a liver now. It’s a totally valid question and I wish I had a dollar for every time this question has been asked of me or someone didn’t know the liver regenerates.
What this tells me, predominantly, is that there’s a pretty widespread lack of knowledge about this topic. Perhaps because a liver donation is a fairly complex undertaking to do for someone, and perhaps because people don’t see or hear enough about this topic. I will continue to think about how I can help with this to help spread the word and to be a resource for potential donors. I’d love to proverbially hold someone’s hand through this process, visit them in the hospital and do all the things that George Manguilli has done for me.
Post-Op Day 78 | Thursday, September 14, 2017 | 161.2 lbs
I've been thinking more recently about how I'm feeling at the incision point and as I lay here in bed writing this, I feel nothing. Deep breath, nothing. My ribs don't feel bruised anymore and the internal soreness is either pretty much gone or my body has adapted to any new feelings and so forth, so I just feel normal. There are definitely still some times throughout the day that if I press on certain areas, I can feel some internal soreness but it is definitely going away now.
I did bloodwork this morning and 2 of the liver function readings (AST. ALT) that have been pretty high are now back down to where they should be.
Post-Op Day 81 | Sunday, September 17, 2017
This morning, Melanie, Parker and I drove up to Hartford, CT to meet up with Rob and Lori, as well as Team Manguilli to participate in our first Liver Life Walk to support the American Liver Foundation. It was a good turn out and great to see George and Joe Manguilli again, meet their wives, and spend some time walking with Rob and Lori. Rob introduced me to a doctor who told me that studies are finding that altruistic donors live longer than they originally thought.
Post-Op Day 84 | Wednesday, September 20, 2017
Today, I nominated Overabove for the Donate Life Employer Recognition Program. I never could have been a living liver donor without the generosity of my employer, which I’ve shied away from talking too much about. They wanted to fly under the radar a bit, but I personally feel that John and Ralph deserve some praise for what they did for me. Fingers crossed Overabove wins this award!
Post-Op Day 91 | Wednesday, September 27, 2017
13 weeks ago today, I was cut open. This evening after work, I set out on a 14-mile run on a loop around Old Lyme that I’ve run several times throughout my life. I’ll admit that it did not go as well as I was hoping and I had to stop and walk to catch my breath more often than I would hope. It was really humid, which made it challenging to catch my breath. I also usually do better at long runs like this earlier in the day, but something had come over me and I wanted to give it a try. I actually hadn’t done this particular loop or the 14 mile distance since June 20, 2016. This was the longest run (by 6 miles) that I’d done since surgery and really I was practicing a little bit for the half marathon I’ll be running with my brother Dylan at the end of October. I’ve written about this race previously as being my personal goal of finishing in less than 2 hours. Well, during tonight’s debacle of a run (miles fluctuated between 7:27 and 11:23), I looked at my watch at 13.1 miles and lo and behold, I finished 13.1 in 1:58:10, just a hair under 2 hours. So, there’s hope! And more importantly, I find it pretty amazing that in 3 months/13 weeks/91 days, my body has regenerated an organ and been fit enough to go out and complete this run. Feeling really good about things right now.
I think I might want to purchase livergivers.com to potentially start up an online community of donors, potential donors, and so forth to try to bring people together, offer information about who to call to be a donor, and so forth. Editor's Note: Funny, by the time you're reading this, I already bought it.
Post-Op Day 92 | Thursday, September 28, 2017 | 160.4 lbs
I had a 3-month follow up appointment with Dr. Mulligan today, a video visit by way of a FaceTime type video call. Sounds like my labs are all good… My ALT and AST numbers had been coming down but are finally within the normal range, so that healing is completely done. My GGT number is still a little high but trending downward and will soon be within the normal range. I’ll do bloodwork again in 6 weeks (rather than my weekly ones) and then again 6 weeks after that, at the 6-month post-op mark.
We talked about how I’m feeling, appetite and if I’m able to sleep ok. Honestly, aside from some lingering stiffness/soreness along the incision area, I feel 100% back to normal. Those things will continue to heal, and as Dr. Mulligan told me, the very top of the scar could take up to 6 months to stop feeling kind of dense, as this is where the knot is from all the sutures. Apparently because there is more material there, it can take longer than the rest of the sutures to dissolve. I will admit that this particular area does feel kind of bumpy and gets itchy sometimes. He said if it’s ever too bad, I can go into the office, they can numb the area and cut it out. I think I’ll skip that for a while. Maybe if at 6 months it hasn’t gotten better, we can rethink things.
Oh, and I just bought livergivers.com.
Post-Op Day 95 | Sunday, October 1, 2017 | 160.4 lbs
Today, I went golfing with a friend of mine that I hit the links with at least once/year. I wasn’t in any way worried heading into it that the twisting and torquing would be a problem for my healing abdomen, and thankfully, I felt no stretching, stiffness or soreness in the area where I had surgery 3 months ago. I can’t state it enough… I feel incredible. The incisional stiffness is almost completely gone and from my perspective there’s just the final healing of the scar. I’m sure internally some things are still going on; Dr. Mulligan told me the other day that the liver takes about a year to be completely re-grown, even if it is functioning at full capacity already. Now, if only Dr. Emre could have somehow improved my golf game when he had me cut open… 😉
Post-Op Day 100 | Monday, October 16, 2017
The Day newspaper ran a front page story about Rob and me today, complete with an accompanying video in the online edition.
Last Wednesday, Kim Drelich and Tim Cook from the Day met with us as the Wallaces’ house and recorded a video while Kim asked us questions. It was a very pleasant experience and felt great to tell our story. We’re hoping this coverage can help spread the word a little more about living donors. It’s an honor to be a part of this story and the article came out great!
Post-Op Day 106 | Sunday, October 22, 2017
We had dinner with the Wallaces today and out of respect for Rob’s son’s privacy, I won’t go into too many specifics, but I was moved nearly to tears by an essay he’s written. As if I wasn’t already immensely grateful to have had an opportunity to help someone, to hear a first-hand account of the impact on Rob’s son really means the world to me.
Post-Op Day 112 | Saturday, October 28, 2017
Today is the final page in the story of my recovery. If I can get through this race, then this journal can end. I registered for this race before I was even approved to be Rob’s donor and this race has become the ultimate goal I’ve set for myself. Early on I assumed I would struggle to walk the whole race. But in recent runs, I’ve been working my way back to where I was before the surgery.
Final Result: 1:42:35 Chip Time, my fastest ever Half Marathon!
