Progress Report For Both Patients

Yesterday was the 2 week anniversary of Derek & Logan’s dueling surgeries, a.k.a. Livernalia. So that meant a check-up at the hospital for me. I needed to provide blood and a urine sample so my surgeon could make sure I was doing well. I got the labs done right away, and then my brother Starskee and I made our way up to 6 Central to visit Derek. When we arrived, THE Greg Hallerman of Boston Marathon fame was visiting along with his lovely wife Jeanette (I think I remembered her name correctly. If I screwed up, please tell me Greg and I will make the edit!) who just so happens to be a massage therapist. Lo and behold she was giving Derek a much needed neck and shoulder massage. Greg also shared more details about his experience on Marathon Monday. It sounds like it was such a great day, and even though the route has always been paved with well wishers from every town on the course, it seemed especially sweet this year.

Then, Greg told us about a project that originated at the Old South Church, the closest church to the finish line of the marathon. The Old South Church has a group called the Old South Knitters and they’ve been knitting together on Sundays for years, making prayer shawls and distributing them around the world. One of the members had a son who didn’t get to finish the marathon last year because of the bombings. She and the members of the knitting group decided to try and knit a blue and yellow scarf for every runner in the marathon as a symbolic gesture of protection. People from all over pitched in and they ended up with 7,300+ scarves which they distributed. Greg received one of those scarves and passed it along to Derek. Needless to say, both of us leaked fluid from our eyes. Greg, I’m not sure you know how much it means to both of us that you wrote our names on your arms and showed them off to the crowds as you ran 26.2 miles last Monday. I still get choked up thinking about the people yelling our names as you ran by. The scarf is such a beautiful memento of that day, and we are forever grateful for the gesture. Thank you.

Greg and Jeanette left, I headed down to my appointment and Starskee headed over to Chipotle to get Derek some protein packed lunch. I was so excited to see my surgeon. As soon as he saw me he beamed and then gave me a big side hug and told me I looked great. He’d already looked at my blood work and said the numbers looked perfect. The interim transplant coordinator popped in too with the newly hired transplant coordinator and they stayed a bit while we talked about how I had been feeling. Finally it was time to take a look at the incision. All along I was under the impression that I had staples, just like Derek. Nope. Just super sticky steri-strips. The surgeon peeled them off because of course the adhesive is giving me a lovely rash. The nurse held my hand while he peeled away the strips because boy howdy did it sting. I know you all think I’m super strong, what with the liver surgery and all, but when it comes to peeling sticky stuff off of raw skin I am a straight up wuss.

The agony ended (it was probably a 2.3 on the pain scale) and then we talked a bit about Derek. My surgeon had been speaking to Derek’s surgeon and assured me that Derek’s situation currently is not a crisis. More to come on that, but basically, the liver that I provided him with is working, just not 100%. This means the doctors can afford to be choosy about a new liver and that Derek is healing every day, a little bit at a time. If there’s one thing I’ve learned about surgeons it’s that they aren’t in the business of trying to mollify patients and their loved ones, they tell it like it is. It was a relief to hear from him that Derek’s prognosis was looking good.

I had another little appointment and then I finally headed back upstairs to check in on Derek and Starskee. There was talk about another trip to the lobby, and then the pesky leaky drain situation reared its head again. Derek decided to nap in lieu of an adventure and I thought that was a perfect idea. Starskee went to a waiting area to do some work and I sat on Derek’s bed and held his hand as he dropped off to sleep almost immediately. His muscles twitched (hypnic myoclonia–also known as that falling feeling you get just before you fall asleep deeply), his breathing slowed and deepened and I watched his eyes dance around as he entered REM sleep. Soon after, he entered a deeper stage of non-REM, the cycle of sleep where healing and regeneration happen. He cycled through the stages rapidly and I imagined that during those deep moments of sleep, my little liver was doing its best to grow and heal. People knocked and I shooed them away. Phones rang and I turned them off. I sat next to him for a while, holding his hand watching him sleep, hoping he was healing.

When he awoke, it was painful. I know all too well what that is like now. Every morning I wake up in pain, my muscles feel as though they’ve atrophied during sleep and fully stretching is not advisable because of the abdominal incision, but the body wants what it wants. I go through a period of trying to stretch, feeling a jab of pain, recoiling, then slowly trying to move my limbs a little at a time to get them moving again. I watched as Derek did the same, flexing his fingers, trying to make his eyes work, flexing his ankles. It was slow going, but he did it, and soon we were talking again. He told me that during rounds yesterday, the doctors said that Derek’s commitment to getting better was providing them with options. They could afford to be picky and they could afford to wait for the best possible solution. They want his new liver to last 60 years, not 6. Derek’s job is to get back on solid food, bring on board as much protein as possible, and stay active. He needs to train and get in tip top shape for the next phase: surgery #3.

After a chat with Derek and his parents, Starskee and I left to find some dinner, Bi Bim Bap from H-Mart for me! On the way back north, I received a text from Derek telling me that his feeding tube got clogged so they took it out. This means that he has to get enough protein and calories on his own or the tube goes back in. He ate the burrito bowl from Chipotle and some raspberry sherbert from the cafeteria. I told him slow and steady eating wins the race. I’m basically on an every three hours schedule with my meals and it makes it much easier to get the protein into my system. He will have to do something similar.

Overall, I can report that Derek looked much better Monday. His bilirubin has dropped down to 18 after being in the high 20’s. The ascites is getting better, though it’s not completely gone, and his sodium and electrolyte levels are stable. He is getting better little by little every day. I am in awe of his stamina and courage and I am so glad that I am healing quickly so I will be able to take care of him when he finally comes home.