LIVER DONATION: A DETAILED ACCOUNT

Written By : Tom, Published : April 23, 2012 with his permission

 

IF YOU ARE PLANNING ON DONATING YOUR LIVER, DO NOT START READING THIS AND THEN STOP IN THE MIDDLE. YOU MUST READ ALL THE WAY TO THE END. I INCLUDED ALL POSITIVE AND NEGATIVE DETAILS...BUT THERE IS A HAPPY ENDING!


The following is my story of the liver transplant process. It was written about six months after the transplant. I tried to be as accurate as possible, bouncing blurry memories off of my wife and other family members. Yet, every transplant experience is unique and there will be differences. However, I hope that it gives you some idea of what to expect.


    On June 10, 2010, I donated about 60% of my liver to our babysitter’s son at the University of Pittsburgh Medical Center. It was a family decision made jointly by my wife and me, with the support of many other family members. When asked if we would do it again, six months later our answer is “yes”. Yet, while going through the transplant and healing process we often felt unprepared, uncertain, and doubtful. We wished that we had known more about how those months were going to go. I know that the experience varies vastly from person to person, yet the following is my account and my family’s account beginning the day before surgery and then continuing for six months. If you have decided to donate a portion of your liver to a friend or family member, I encourage you to go forward bravely but cautiously. I hope that our account will help you to know what to expect and will perhaps make the healing process a little easier on you than it was on me. I hope that not only you, the donor, but also any family members affected by your donation, will read this as well. The decision to donate is really a family decision and recovery is definitely a team effort.


    My name is Tom. I am 31-years old. My wife is Gretchen. Our 1-year old son is Isaiah. We donated to Patrick, son of our babysitter, Linda. The process of deciding whether or not to donate my liver took many months of research, prayer, conversation, and soul searching. It also required a 2-day screening that included 10-15 blood tests, CAT Scans, psychological and social evaluation (for me and my wife), chest x-rays, general physical, cardiovascular evaluation, and more. With the support of my mother, father, brother, many other extended family members, both our Methodist and Catholic church communities, and approval from the medical committee we decided to go forward with the donation process. Our biggest concern was the way that several months of difficulty would affect our 1-year old son, Isaiah. We chose the date, June 10, because I am a high-school teacher and doing it right at the beginning of the summer would hopefully allow me enough time to heal so that I could start school on August 23rd. This calculation was correct and I felt just able to do my job for the start of the year (more on this later). With concerns about my son and work well-considered, we did go forward and this story really begins 1 day before the transplant, June 9, 2010 at our pre-transplant meeting.


Pre-Surgery

    The pre-transplant meeting was attended by me, the transplant surgeon, the living donor advocate, Gretchen (my wife), Patrick (the liver receiver), Mary (Patrick’s wife), and Linda (Patrick’s mom). It was at this meeting that we went over the final details and had some time for final questions. We were told to arrive at the surgery check-in at 4:30am the next morning. I pulled out my notebook that I’d been keeping and asked six or seven questions I had prepared. This number is probably a little below average for a meeting between the surgeon and myself. Each time we met I would pull out my notebook and ask ten to twelve questions that my wife, my parents, or I had thought of since the last meeting. This was very helpful for me to reduce anxiety. I often would wake up in the middle of the night in the months before surgery and add a new question to my notebook. The donor advocate and surgeon were always so patient and professional with all of my questions, always answering thoroughly. I had full confidence in them for this surgery. We asked about dietary restrictions and were told that it was important to keep our dinner that night light (chicken soup and bread) and not eat anything else after dinner. I have worn a cross around my neck at all times since I was about seven years old, but at this meeting I was told that I would not be allowed to wear it during my surgery because it could get in the way during the operation. I felt uncomfortable not having this sign of my faith with me during such an important life event so I asked if I could draw a cross on my foot (far from the surgical area, no risk of entanglement) and I was given approval for this. We were also surprised to learn at that time that Patrick

and I should both use an enema before bed to clean out our systems. I concluded the meeting with a group prayer, asking the Lord for courage, strength, wisdom, and protection in the days and months ahead.


    After the meeting we returned to the Family House at University Place and spent the evening with our families, had a light dinner, joked, told stories, and mentally prepared ourselves for the big day. Before bed, I gave my Mom and Dad special hugs. Some concerned tears were shed but my parents supportively urged me on. To this point I was always the bedtime guy for my son and so I put my son to bed (read a book called “Baby Jesus”, said the “Our Father”, laid him in the crib, zipped the sleep sack, said goodnight) for the last time and cried a bit myself, knowing that the impending lifting restriction (10 pounds) would not allow me to do this for my son for two months. Also, some of the tears were because I was praying that this would not be my last time ever seeing my son. While we were well aware of the risk of death (1 in 1000) and considered it a worthwhile risk to help a friend, it still lingered in the back of my mind during these last moments with my son.


    After this emotional period, we entered into a much less tear-jerking episode...the enema. If you have not done an enema before, this is something that you may want to learn more about. It was not painful, but it was a two- person job. All I will say is that you probably want to be sure that you are very close with the person who will help you (probably a loving spouse is the best choice).


    My wife and I prayed and cried together and then snuggled close that night, knowing that snuggling would be difficult for a while and again in the back of our minds that this could be the last time we snuggle ever. The alarm rang at 3:30am and we knew it was the big day. We were nervously excited. We walked from the Family House to the Hospital together and we entered the very confusing and unfriendly surgery registration area (this was perhaps the most unsettling 10 minutes of the day). While most of the people we met throughout the process were very helpful, this was a rough way to start the big day because these individuals were very impatient and the hospital was trying some sort of new computer check-in process where I had to type in my own name on a touch screen that only worked intermittently. I accidentally entered my name and address wrong and there was no way to go back and fix it. The staff members were very upset with me and they had to go in manually and fix it and that got me a little rattled. This whole registration snafu was a disconcerting way to start the day, but once we got past that the next 24 hours or so went pretty much according to plan.


    At this point Patrick and I were moved to a room with about 15 people on gurneys, each waiting for a different surgery. Behind separate curtains, we each changed from our street clothes into gowns, and then waited on side-by- side gurneys for about an hour. During this time one family member could be with each of us. My wife stayed with me for the hour but Patrick had a 15-minute rotation of Mom, brother, wife, and cousin. During this hour, we were interviewed by several doctors/nurses/medical students about our names, height, age, blood pressure, other vitals, etc. A couple of saline IV’s were started and we just waited, talked, prayed, and joked. In the last 10 minutes Patrick and I pulled the curtain and each had a little bit of special quiet time with our wives and final hugs and prayers for God’s strength and guidance in whatever may come. A nurse offered to take my eyeglasses and put them in a locker, but my wife kept them instead and at this point my vision became quite a bit more blurry. Yet I was still fully conscious. I gave my wife a last kiss and hug and was then rolled away to a new room where my wife could not come. Patrick followed a few minutes later.


    I remember the next prep room as being a bit dark and a bit chilly (I was offered blankets), but otherwise it was as comfortable as any other hospital room. I could not see very well without my eyeglasses. I remember repeatedly singing the “Our Father” in my head and whistling a bit. I was in this room for about 35 minutes. Again, I had more interviews with doctors, nurses, anesthesiologists, surgeons, and others. I had to repeat my name, weight, address, social security number, and other vital information at least another five times. I kept asking people, “Are you actually involved in my surgery?” Some said “no”, others said “yes”. I said a short pre-surgery prayer with those that said “yes”. An anesthesiologist came last and changed one of my saline IV’s to something else. I said, “Let’s rock and roll”. Three people started wheeling me out of the room and into the hall and that is the last thing I remember. It was approximately 6:00am, according to other sources.


During the Surgery (Written by Gretchen Seibert, my wife)

    As you read this, realize that we had to be awake at 4 am to be at the hospital at 4:30 am, and that sleep the

night before the surgery was not easy to come by, so this entire day was filled with anxiety from lack of sleep. After leaving Tom when they wheeled him away out of the pre-surgical area, I checked in briefly with those in the family waiting room (Patrick had many family members waiting there all day). Patrick’s family said they would call me if

they got any news. I needed to go back to the Family House to take care of Isaiah. It was advised that we not bring our 1-year-old son to the hospital. Therefore, I could not stay in the waiting room. During the day, the hospital had computer update boards that you could watch to get a sense of each patient’s progress. Patrick’s wife, Mary, called me when any updates appeared on the board for Tom or Patrick. Tom asked me to make sure that Brian (Patrick’s brother) escorted me back to the Family House where we were staying since it was around 6am and in the dark of morning. I got back and relieved my mother-in-law who was listening to see that our son was still asleep. I knew that the first update we would get about the surgery would be at 10am, as that is what the donor coordinator, had told us. I tried to sleep some more, but couldn’t, and spent some time with our son when he woke up. I was back in the family waiting room a few minutes before 10am awaiting the first update. We found out that the surgery got off to a slower start because Tom’s heart had a rapid rhythm, and a special cardiology update was called for, delaying the actual surgery. The donor coordinator explained that it is not uncommon for living donors to experience this heart issue due to adrenaline in the system, but that the surgeon likes to make sure all is well before proceeding. Although they were now one hour behind the planned schedule, the surgery was now underway and all was well. We were told to expect more updates about every two hours throughout the day. I raced back and forth from the Family House (a place close to the Pitt campus to house families of transplant patients) to the hospital every two hours. I wanted Isaiah to have his Mama around as much as possible, but also wanted to be at the hospital for all the anticipated updates. At each update, things seemed to be progressing, but we didn’t get any notable details – just that the dissections were being done very carefully and things were going slowly, but surely. Unfortunately, the family waiting room closed at 7 pm and we were to be moved to the Intensive Care waiting area after that. As of 7 pm, we still had not seen the donor coordinator for our 6 pm update. This began to make me very nervous that something had gone horribly wrong. We were in the ICU waiting area until about 10:30 pm worrying about what was happening the whole time. Remember, we had heard nothing from anyone since the 4 pm update and we were expecting a 6 pm update that never happened (we still don’t know why that update was skipped).


    At about 10:30 pm, a doctor who had helped with the surgery came to give us an update and told us the transplant was complete. We were not supposed to be allowed to see Tom so soon, but the nurses made an exception and let me see him at 11:00 pm. Tom was coming out of the anesthesia so fast that he didn’t even have to go to a post-surgical recovery area as planned; instead he went straight to ICU. The nurse in the ICU said that Tom would try to stay awake if we were there and that with his throat tube and other post-surgery issues, the best thing for his body would be sleep. The nurse said family wasn’t really allowed there until 8 am and suggested we leave so Tom could rest.


    When I saw Tom, he was very groggy and wanted me to give him a big kiss. His breathe smelled/tasted like chemicals, and his mouth was so dry. He wanted me to keep using the sponge “lollipops” to put water on his lips and tongue, but he would fall asleep almost immediately and clench bite on the sponge and then it was hard to get it back out of his mouth. He kept waking up to complain that his mouth was so dry and to tell me to “keep it coming” with the water sponges. Tom looked pretty much like himself, but with lots of tubes and drains attached. He didn’t seem to be in much pain yet or to realize how much pain he was in, and he asked how Isaiah was doing and how Patrick was doing.


    Leaving Tom was the most confusing part of the day because the ICU was very dark and lonely and it seemed like someone should stay with him, but it seemed best to follow the advice of the medical professionals. I will regret following that advice for the rest of my life, due to what happened to Tom during those four overnight hours when he was alone. I think about leaving him there alone every day and it has been over a year since the surgery now. That is the one thing I would change: I would insist that someone stay with him in the ICU despite what the nurses said.


    Before we left, we heard that Patrick was recovering faster than expected, too, and that he was already in the ICU also. Tom’s surgeon came to see him about midnight and Tom was quite concerned that the doctor had been working for 20 hours straight without rest, meal, or sleep. Tom told the surgeon thanks, shook his hand firmly, and was very emotional about how he was working so hard for us. The doctor told Tom he did well during the surgery, asked about his pain level, answered some questions about how soon tubes could be removed, and told Tom he’d be checking on him often over the next several days (Tom says that he doesn’t remember any of this conversation with the surgeon) Tom fell asleep again and so I left the room. I did not see him again until 7am.


Waking up (11pm, Day of Surgery- 8am, Day After Surgery) (Tom resumes writing)

    My first memory after surgery came at about 11pm. I was still extremely groggy and only half-conscious. Yet, I remember feeling as if I had been hit by a truck (much different than I felt when I said, “Let’s rock and roll” 20 hours earlier). My abdomen felt as if a knife was stuck in it. My lips and throat were as dry as a desert. I was disoriented. My throat felt extremely funny and sore and sort of like I was choking, because the nasogastric tube was still in (I was intubated for the surgery). It was a hellish experience. My wife was present and I tried to be light- hearted and asked her (from my very dazed state) for a kiss, but I really felt terrible. I was not allowed to drink or eat anything, but my wife was allowed to use a little Q-tip type sponge to wet my lips. At this point, that little sponge was the only relief I had. I also managed to ask, “How is Patrick?” and my wife told me that he was okay. I was very heavily medicated at this point and fell back to sleep. The episode in this paragraph lasted about 15 minutes.


    The next time I awoke was at about 3am, according to the clock on my wall in the intensive care unit. At this point, I was quite aware of what was going on around me. My lips and throat still felt extremely parched. Still I felt like I was choking on the nasogastric tube. Still my abdomen felt like a knife was in it. Still my whole body was sore and completely wiped out. The next four hours were probably the worst part of the entire recovery for me. Actually, it was the worst four hours of my entire life. I really wanted/needed help from somebody...anybody. My family was told by a misinformed nurse that they were not allowed to stay in the intensive care unit and should return at 8 am. My wife and I had been told before surgery that she would be allowed to stay with me through the night. I did not know at this time why nobody was present and I started to fear that either my son had been seriously injured or that my father had a heart-attack and that is why nobody was present to help me.


    We understood, much later after the event, that my wife was allowed to be present, but there was some sort of miscommunication. During this period, the intensive care unit nurse was also not very helpful and seemed upset with me when I asked her for help. I felt worse during this period than any other point in my life and really needed some help. I was occasionally able to persuade the nurse to put that little sponge on my lips, but she used it very conservatively.


    For pain management, I was on a morphine drip that I had some control over. It would release the medication every five minutes if I pushed a little button. There was no timer around so I just kept pushing the button. When it actually released morphine it would beep. That beep was music to my ears. Then I would continue pushing the button for another five minutes until I heard the beep again. I suffered in agony until about 5am, when Patrick’s mother and wife, came to visit me. In extreme distress and tears, I asked them where my family was and if everything was okay! They told me that everything was fine and that my family would visit soon. I held tightly to their hands and much of my stress was relieved. They used the sponge to moisten my lips and throat.


    About three hours later my wife and father entered the room and I again sobbed and asked “Where were you! Where were you! Where were you! I love you! I missed you! I need you! Where were you?!” I calmed down after about fifteen minutes. My wife and father used the sponge to relieve my lips and throat, sat by my side, held my hand, and things then improved dramatically. If only that nurse my wife spoke with at 11pm the night prior had been properly informed, most of the emotional and mental stress of these four hours would have been erased. The physical pain and discomfort was extreme but manageable. So, my tip to you who are considering liver donation: Make sure that you know if your family is allowed to be in the intensive care unit or not, ask another professional if something seems not right. Having a family member present when you wake up from surgery will be extremely helpful and will make this wakeup time a lot less stressful than it was for me.


Recovery in the ICU (8am, 1 Day After Surgery- 7 pm, 1 Day After Surgery)

    Maybe I am spoiled, but I really enjoyed having a family member with me around the clock for the first

couple of days. Mostly this was for emotional security but also because it is really a pain (literally) when you want a sip of water, but the cup is 4 feet away and you can’t reach it without a major 10-minute effort and you also don’t really feel like calling the nurse just to help you grab a cup of water. Family members were nice for this sort of thing. We had a 4 hour rotation of Gretchen, Mom, Dad, Mother-in-Law, repeat. By about 10 am of this first morning the nasogastric tube was removed, making life quite a bit better. This was the beginning of the process of tube, wire, IV removal. At this point I probably had a total of five tubes, IV’s, or wires attached/inserted in my body as a result of the surgery. It seemed that over the next five days I had one more tube/wire/IV removed each day. This was a nice way to mark progress. I knew that each time something was removed I was that much closer to being released from the hospital.


    I was still in the intensive care unit at this point and still using the morphine drip, hitting the button as frequently as possible. For the next couple of days, pain management was the main issue. In general I know that liver donors are healthy people and many say that they will try not to use pain medication. I shared this philosophy before the surgery. Actually, before the surgery I had not used any medication of any kind for any illness (I have had several teeth drilled without novocain). It has been my philosophy that my body gets stronger every time it overcomes an illness without external help. This ideal went right out the window after the surgery. I was told that taking the pain medication would help me to heal faster because my muscles would be more relaxed. I believe this is true and my main goal was to get back to being a father to my son, husband to my wife, and contributing member to society. So, I took the pain medication. In addition, the pain was so strong that once I felt the pain, I had no intention of not using pain relieving medication. It is not normal to cut a major organ out of one’s body and so I considered it okay to diverge from my normal medication practices to help my body recover.


    The next eight hours in the intensive care unit were fairly uneventful, but still very painful. Nurses and doctors checked on me every 30 minutes or so. I rested in the bed, dozed a little bit and continued to use the morphine drip. I stayed on my back the whole time. Rolling onto my stomach or side was not an option for two reasons: #1-wires, tubes and IV’s, #2-rolling over involves many abdominal muscles and mine were hurting (Sleeping on my back was something that I had to do for about 1 week, then I eventually was able to roll to my left side. After about 1 month I began trying to sleep on my right side, and after about 8 weeks began sleeping on my stomach again. For about the first 1-2 weeks, rolling of any type required some help from another person or very slow, very patient shimmying). At about 7pm, I was transferred from the intensive care unit to the normal transplant recovery area. During this trip down the hall I was able to go past Patrick’s recovery room. He was awake. I gave him the thumbs up and he gave me the thumbs up. We joked about how we both felt “Great!” and then we moved along. It was a short interaction, but it was very encouraging to see him awake and doing about as well as I was.


    I was extremely, extremely tired but still unable to sleep because of the various pains and tubes and wires all over my body. Additionally, visits from doctors and nurses every few hours prevented me from getting quality sleep if I ever would have fallen asleep. This was also quite frustrating, because I had been told by two other people who had donated portions of their liver, “You’ll probably just sleep through the first few days”. For the person reading this, I hope that you are like the liver donor’s I spoke to: sleeping through the first few days would be great! However, this was not the case for me. I started to have anxiety about not sleeping because I thought that my body would be unable to heal without sleep and this anxiety also prevented me from sleeping. I spoke to a doctor about my anxiety and he assured me that my body could heal even if I didn’t sleep at all for days. His advice was very comforting and about 10 minutes after speaking with him I had my first good snooze for about 3-4 hours. At this point we are about 30 hours after surgery and I think that this was a first turning point, when I started to have some hope that I would actually get better.


Recovery in the Hospital (Day 2 After Surgery- Day 4 After Surgery)

    The pain was still significant, but by this point I was switched to pain medication via pills. I started to notice a

small decrease in the pain and started to feel a little bit better. On this day, the second day after surgery, I got up out of the bed and even tried a little bit of walking. Getting up was extremely difficult and required much care, similar to what I imagine a struggling 90-year old might experience on a daily basis. Yet, I did get up with some help from my father and a bit of rolling, shimmying, and pulling. I walked gingerly for about 50 feet and then walked back 50 feet. This was a triumph and helped me to get into a better mood. I am not sure which was more difficult about walking, the pain or taking the many wires and tubes with me, but it still felt good to get up and move under my own power. Again, hope was growing amid the trials. Also on this day, my father took me in a wheel chair outside the hospital for about 15 minutes to a little garden. This was a big relief for me. After the garden visit, I walked a little bit more, visited Patrick for about 5 minutes (his room was nearby and he was doing about as well as me), and got back in bed. That was enough activity for one day. I snoozed a bit and just rested for the remainder of the day. Doctors and nurses continued to check on me regularly and I think that it was at this point that I was allowed to begin eating solid foods again (but I am unsure about exactly when this began). It was recommended that I keep it to light, non-fatty foods such as bread, chicken noodle soup, salad, etc. I was also told to just eat small portions (1/3 of a meal) 7-8 times a day, instead of 3 big meals. This was fine with me because I didn’t have much of an appetite. It was good to have some real food and it was just another sign that I was making some progress...although slowly.


    Around this time (day 3 after surgery) the thick tube that ran to a baseball-sized bulb (JP Bulb) was removed from my side. This was a relief because this was by far the most uncomfortable and weirdest tube. It is very strange to look at liquid from your liver collecting outside of your own body. However, it was necessary because the color of fluid exiting my abdomen was a key indicator of how well my liver was doing and if there were complications such as bleeding or leaking of bile. It was nice to have it removed and made rolling over in bed much easier.


    Day 3 after surgery continued: Wires and tubes continued to be removed, signs to me that I was getting closer to being released from the hospital. Two big indicators were needed before I could be released: peeing and pooping. The peeing happened fairly soon after the catheter was removed. The pooping did not happen until about 4 days after surgery. I have never celebrated a bowel movement so joyfully (except the time that my son had his first adult shaped poop at about 9 months of age). Anyway, this was the last major indicator that I was ready to be released from the hospital. I continued to try to get up and move around as much as possible. This day I walked all the way down the hall, up 10 stairs and back down 10 stairs, and out to the garden for a 30-minute breath of fresh air on a sunny bench. I was feeling excited about leaving the hospital, but still feeling very sore. I was also very sleepy at this point and would often fall to sleep 2-3 sentences after beginning a book.


    I also remember taking a shower on Day 3. This was a refreshing positive turning point for me. I felt stinky, sore, and sticky from so many bandages. When the nurse told me I could take a shower I didn’t need to be told twice. Prep for the shower probably took about 30 minutes: undressing with help, putting special plastic covering and bandages over my abdominal stitches, and just maneuvering around the room. However, once that nice warm water hit my back and neck it felt like heaven. I think I stayed in the shower for about an hour. It helped to relax my muscles and made me feel clean again. This was probably one of the first times since the surgery that I really felt good. It was a very uplifting turning point and I continued to take showers daily after this, mostly to relax my muscles.


The University Place Family House (Day 4- Day 12)

    I was released from the hospital to the Family House on day 4. This involved meetings with 4-5 different

doctors and nurses, some checking me, others giving me instructions (requiring about 2-3 hours in the morning). I was given time for questions with each of them, but still felt a bit uninformed about how to live outside of the hospital and was feeling nervous about life “on the outside”. I left in a wheelchair and my wife pushed me to the University Place Family House (about 3 city blocks from the hospital.) I think that I probably would have been able to walk this distance without the chair but figured I could experiment with longer distances later. I mostly wanted to just get to the Family House, see my son, Isaiah, and figure out how I would live life for the next week or so.


    I don’t remember much detail about the week at the Family House, but I do recall it as a generally positive and peaceful time. I was still moving slowly, getting up and down slowly with some help. I was eating a variety of foods, trying to stay with mostly organic vegetables, fruits, and poultry. I vividly recall enjoying some tortilla chips and guacamole in the middle of the night. Food portions remained small and meals continued to be 6-7 times a day. I was able to get out and walk around a bit, enjoying nice slow outdoor evening strolls of about 1⁄2 mile at a time. Sleeping was still challenging but I was getting used to the deprivation and interrupted sleep. Yet, I do recall the night time as the most difficult and the times that I was most likely to feel a sense of anxiety and depression, dreading sleepless hours in bed, with little to think about other than the pain in my abdomen and wondering how long it would be before I was better.


    Our son, Isaiah, was 1-year old and I was able to sit on the floor and play with him a bit. I had to be careful that he would not try to push or touch my abdomen because it still hurt quite a lot when touched. I couldn’t move from my seated spot or chase him around, but I could roll a ball back and forth, rub his head, and read him a book. It wasn’t the high level of interaction that we had before surgery, but it was okay. I did cry a few times when we were on the ground, hoping to soon wrestle again and carry him around. I didn’t get there until 8 weeks after surgery. Patience during the recovery was needed. I wanted to get right back into everything, but knew that if I rushed I might do permanent damage or end up back in surgery (hernia risk), so I just had to take it slow and be patient. This was frustrating, but I knew it was part of the deal. On the flip side, it was important that I stay as active as possible to promote flexibility and prevent muscle atrophy. As long as it didn’t involve heavy weights and extreme exertion it was generally permitted by the surgeon (walks, light housework, etc. were encouraged).


    I had many visitors at the Family House and enjoyed time with them. It was nice to sit on a normal couch with a group of friends and family, share stories, and feel somewhat normal. Patrick’s recovery was going very well

and he arrived at the Family House just two days after me and so we had many opportunities to hang out together during this time.


    One drawback of having visitors that seemed unique to me and not common for most, was that laughing was extremely painful for me (the pain was an eleven on a one to ten scale and I am not exaggerating). I had to tell family and friends not to tell jokes. If ever I began to laugh it usually ended with me crouching into a standing fetal position, breathing Lamaze style, and just trying to think bad thoughts to stop from laughing. If this attempt was unsuccessful, the next step was sobbing from pain (the crying hurt just about as much as the laughing) until eventually I was able to control myself and calm down. I had a few episodes that went on for about 15-20 minutes in which I felt a higher level of pain than I felt the first day after surgery. I eventually learned to avoid conversations on funny topics and learned to leave the room when things started to get whimsical. Unfortunately, this laughing pain continued for about three months and turned out to be one of the greatest challenges of my recovery. I like to laugh and joke around and had to suppress my real personality for a while. Later on when I got home, watching movies was one of the best ways to relax but it turned out that even the most serious movies have a least a few funny parts so I couldn’t watch most movies or TV shows. I am not a fan of the violence of “24” and had not watched the show for over five years but it turns out that Jack Bauer rarely jokes and that the suspense of the show is a great way to pass some time. So I ended up watching the first two seasons of “24” during my recovery...nothing funny about that. The good news for anybody reading this is that they tell me that this laughing pain is quite rare for liver donors and receivers.


    Also, during the week at the Family House I was backing off on the oral pain medication, oxycodone. When I left the hospital I was taking two pills every four hours. While in the hospital I made almost no effort to reduce pain medication because I knew that I would have to wait for a nurse to bring the medication, which could occasionally take over 30 minutes. At the Family House I had full control over the medication and so I tried to extend the time between doses as much as possible. I went from 4 to 4.5 to 5.0 hours trying to increase about 30 minutes each dose. Most of the time I made it to the goal. A few times I came up short. However, by the time I left the Family House I was only taking one pill a day, just before bedtime. I continued taking the oxycodone at bedtime for about two weeks and then stopped altogether. So, by two-three weeks after surgery the pain was so little that I really didn’t need any pain medication any more. This was a relief and I was really feeling that I was making progress and that I was getting better. It was a hopeful and positive time in general. On the last night in Pittsburgh my Dad and I decided to go see the Pirates play the Indians. This required me to push myself probably a bit more than I should have, but I took it slow, did survive, and we had a good time at the game. I didn’t leave my seat for the entire game, just getting to it and back to the car was enough of a challenge for one night. My dad was in charge of snacks and catching any fly balls!


    About a week after leaving the hospital (12 days after surgery), I had my “two-week” follow up visit with the surgeon. I seemed to be recovering according to plan and so I felt confident that I would be given the thumbs up to go home (2 hours from Pittsburgh). At this meeting I was told that, according to my blood tests, my remaining liver portion (40% of the original size) was functioning as 100% of a liver! Wow! Way to go liver! This was encouraging and the kind of uplifting news my wife and I were hoping for as we began to pack up and head home. By my own estimates, my body as a whole was functioning at about 55% of full strength, but I felt fairly human. We said goodbye to the Family House and left with mostly fond memories of the week. I recommend the Family House over a hotel because we had the comforts of a full kitchen, a living-room style TV room, and just an overall positive environment to share struggles with other people experiencing similar challenges. I hope you will at least look into it before deciding where to stay during recovery.


Going Home (Day 12 – 6 Weeks After Surgery)

    It was nice to get home, but not as nice as I thought it would be. At the Family House my main job was to

recover and just take care of myself. There wasn’t really anything else to do. Once I got home, I got pretty depressed because I began to realize all of the things that I couldn’t do. I thought about how “I couldn’t carry our suitcases into the house, couldn’t help my wife unpack, couldn’t move the suitcases to the attic, couldn’t carry the groceries in to put them into the fridge, couldn’t help my wife watch our son, couldn’t run upstairs to grab a roll of toilet paper to refill the roll, couldn’t run downstairs to help with a load of laundry, etc. etc. etc...I couldn’t go for a real walk or jog, couldn’t mow the lawn, couldn’t drive anywhere, couldn’t go anywhere around the house without a lot of effort, couldn’t go away from the house without asking somebody for a ride (no driving for 6 weeks) etc. etc. etc...” Before this point, in Pittsburgh I was just focused on physical recovery and the mental end of things was minor. I was

released from Pittsburgh when I was physically ready to go home, but this is when the mental game began. I broke down in tears about 10 minutes after getting home and felt a terrible sense of despair. I felt useless and was unable to do all of the husbandly things that I usually do. My wife comforted me and reminded me that we knew this wasn’t going to be easy, but that we were in it together. We had many similar conversations almost daily for the next six weeks. She was awesome throughout the entire process and took so much on her shoulders. I really had to put a strong effort into staying upbeat and not dragging her down. While the “couldn’ts” were on my mind frequently, in reality I “could” read books to Isaiah, “could” wash dishes, “could” fold laundry, “could” walk around the yard, “could” cook, and “could” do many other things. It was very important for me to express my thanks to friends and family frequently and to continually remind them and myself of my gratefulness for all of their assistance. My mother stayed with us for almost two months straight (she normally lives 5 hours away from us) and helped a ton with our son Isaiah and was just generally helpful for many odd jobs. Members of our church cooked us meals and helped watch Isaiah so that Gretchen could do errands and other things. This was not a one-man mission. Sometimes I didn’t feel very positive and had to dig down deep and pray for some patience and recognize the many good things going on around me. (If you do not have a young child, you probably won’t need as much help as we did. By two weeks, you can pretty much take care of yourself, aside from tasks that involve lifting over 20 pounds. I think that if you have a child over age 7, they could actually be very helpful.)


    I think we got home on a Friday and it was on Sunday that we made the first effort to go out and do something: Church. This took a lot of energy and it was our big activity for the day. But, it was so uplifting to be there among our partners in Faith and to share in the hymns and prayers. People were surprised to see me there so soon after the surgery, but I knew that if God had gotten me this far I was going to show up for worship. It was good for me, my wife, and Isaiah for so many reasons. It was tough, but it was just another one of those markers that helped us to feel just a bit more normal again. After the service, I took a good, long nap and pretty much rested for the remainder of the day.


    A friend of mine is a physical therapist and a couple of days after I got home she gave me a list of light exercises that I could do to keep active and speed up the physical recovery. This gave me some hope and I started a chart to help monitor progress (week 1=5 arm circles, week 2=10 arm circles, week 3=15 arm circles...”okay, I’m getting better”).


    Right off the bat, I also tried to get out for walks daily. First week home (3 weeks after surgery): 1⁄4 mile, Second week home ( 4 weeks after surgery): 1⁄2 mile, Third week home (5 weeks after surgery): 3⁄4 mile, Fourth week home (6 weeks after surgery): 1 mile. I felt kind of like George Burns or any other octogenarian, hobbling around and sort of bent over for much of these walks. But slowly, each week, I worked toward standing up straighter, walking more smoothly, putting more arm swing into it, and felt that I made a little progress most days.


    Sleeping was a similar slow progress. I was mostly on my back for week 1 at home, then onto my back and left side for weeks 2-4, then both sides and my back for weeks 4-6+. I don’t think I was able to sleep on my stomach again for about three months. In general, my back and buttocks were sore throughout these six weeks, partially from hunching over and partially for sitting and laying so much. Slow progress. Slow progress. Slow progress. Patience. Frustration. Patience. The daily mental breakdowns continued, the reassurances from my wife continued.


    From the mental perspective, it was a real battle. I wasn’t really in the mood to talk to anybody (other than my wife) for about a month. Everybody I talked to wanted to tell me “You are a real hero! Blah, Blah, Blah.” I really was just feeling like: “Why did I do this? It wasn’t worth it... I hope that I am not damaged for life...I hope that I will someday be as healthy as I was before this whole mess...” I didn’t feel like a hero. I didn’t really feel as if anybody (other than my wife) really understood how I felt and I didn’t have the energy to explain. The only other person I really wanted to talk to during this time was Patrick, the person who received my liver. I felt that he probably was having similar challenges that I was having and that we could swap stories. This was generally true. It helped me to feel better when I would see signs that he was actually doing better than he was before the surgery, like when he showed me that the swelling in his legs had disappeared only two weeks after surgery (In my head: “Maybe this was all worth it.”) On the flip side, sometimes he would complain about new pains and other problems with recovery (In my head: “Gosh, maybe this wasn’t worth it, I hope that he isn’t worse after surgery than he was before.”) Life was a mental rollercoaster. Probably, about four weeks after getting home (6 weeks after surgery), I started to want to talk to my brother on the phone and my college roommate again and slowly became more comfortable talking with other people again too. Though I say now that I wasn’t in the mood to talk to people, most of them didn’t know it. I still

had plenty of conversations and forced myself into social situations just to keep from going crazy. While it took effort to “put on the happy face” I did it anyway and it was good for me.


A Big Setback (3 weeks after surgery)

    While progress was generally steady, I did have one major setback about one week after getting home (3

weeks after surgery). At the time I was doing quite well and feeling pretty good, still tired frequently, but generally doing pretty good. Then while watching the movie “Rudy” a few scenes made me laugh pretty hard and I pulled an abdominal muscle (this was not explained until several days later when I made a return trip to Pitt). The pain was excruciating (12 on a 1-10 scale) for several hours. I was stuck on the floor in a fetal position and my wife helped to drag me to the shower just to loosen me up and calm me down from screaming. I went back to the oxycodone. I stayed on the oxycodone every 4-5 hours for the next 3 days and stayed in bed for about 3 days straight. The pain (level 7-8) remained for several days and then began to lessen. It was as much a mental and emotional setback as a physical one. I was afraid that it might happen again if I laughed again. I was afraid that something else could cause a relapse. I didn’t want to cause any long term damage and so I became very tentative and overly cautious about everything. I got pretty conservative with all activity and this was setback to my overall recovery: mental, emotional, and physical. It wasn’t until about two weeks after this incident (5 weeks after surgery) that I started to get back on track. I was out at a public park hobbling around with my wife, when I saw Patrick out with a group of friends at an outdoor barbecue. He was moving around very smoothly and even did a little spinning dance move. I was happy to see him doing so well (just 5 weeks after surgery), but it also made me really upset. I figured that, “I should be doing at least as well as the individual who received my liver...definitely not worse!” It made me so mad at myself for pulling the muscle (which I couldn’t have controlled) and then mad at myself for being so conservative since pulling the muscle and then just frustrated that I wasn’t better already. However, it also served as a bit of a stimulus to get me moving again the way that I had been before the muscle pull. From this point, progress continued slowly but more steadily and I tried to stop hunching over and stand up straight and walk smoothly. It made a big difference and slowly progress quickened. Yet, a fear remained for about 5 months that I would have another relapse of pain. You may not have a pain relapse like me. Yet, I think the lesson learned from this story is that you should expect the unexpected. Try to accept that fact and move forward.


Wrapping it Up and Moving on with Life (7 weeks After Surgery and Beyond)

    What about the surface wound itself? It was rather interesting to watch and feel. It is 6 inches long and

extends from my sternum in a downward curve around my right side. In the first two weeks it was red, oozy, swollen, and very sensitive to touch. After a few weeks it began to turn pinker and drier in spots and some of the swelling decreased. By about 1 month, no bandages of any sort were needed anymore, but it still hurt to touch and was still swollen. I am not exactly sure how long it took until it didn’t hurt to touch anymore, but maybe 2 months. I think it also took about 2-3 months for the swelling to go down. Now at about six months after surgery there is a thin whitish, pinkish curved line about 1⁄4 inch thick. It never hurts anymore but I do occasionally still have some numbness in the area. I actually like my scar and think it is kind of cool. An unscarred abdomen just seems kind of boring now that I have a neat scar to show off. My wife says that she likes it too and it reminds her of a good thing we did together to help another person.


    At about 4 weeks after surgery my physical therapist friend gave me permission (and the surgeon did too) to start getting on a light weight-lifting plan. I started doing lifts from the floor to the kitchen table: 10 pounds, 10 lifts, 3 times each day. Every three days I increased the weight by one pound. Days 1-3 (10 pounds), Days 4-7 (11 pounds), Days 8-11 (12 pounds). This put me on pace be able to lift my 20-pound son within one month (2 months after surgery). This provided me with great hope and inspiration because I had the clear goal of lifting my son and a clear plan to reach it. I followed this plan methodically and was given permission by the doctor to lift my son at my 2-month checkup! This is when life really started to feel normal again. I strapped Isaiah into the carrier backpack and took him on a 1-mile hike within a few days.


    When asked how I was feeling at this point, I would often respond, “About 85% back to normal.” I was still a bit sore in my back and abdomen. I was still low on energy frequently. But, I was pretty much doing most of the normal activities of daily life with little trouble. I am a high-school teacher and reported back for duty with the rest of the staff on August 23rd (ten weeks after surgery). I had to take it slow and could not lift big piles of books, but generally I was able to do my job at a level close to normal. By mid-September (12 weeks after surgery), I was at

about “95% back to normal” still a little tired, still having a little bit of trouble rolling over in bed, still feeling occasional twinges of pain, but nothing that would slow me down from normal activity. I work on the 3rd floor of the building and would climb up and down 3 flights of stairs at least 4 times a day by this point. In the first week of October (4 months after surgery), my high-school environmental club had a trash cleanup near a rocky cliff. I was able to climb up and down a 100 foot cliff carrying a full bag of trash, twisting and turning through crevices, squeezing between cracks, pulling my body up onto ledges 2 feet above my head. My one-and-a-half year old son and I were back to long bike rides up steep hills, long hikes through the woods with him on my back, and WWF style wrestling matches in the living room. I was doing all of my husbandly duties: carrying in groceries, fixing light bulbs, trimming the shrubs, and hauling a large load of branches to the county compost site, snuggling with my wife, etc...Life was “normal” again.

   

    The remaining 5% of recovery continued for an additional 3 months (until about 6 months after surgery). My energy levels continued to increase. I had fewer twinges in my abdomen. At about the six-month mark, I started to tell people that I was 100% better, although it might be more like 99.9% still. When asked, “Would I do it again?”, at one month I said “I’m not sure”. At two months I said “I’m not sure, probably not”. At three months I said “Probably not.” At four months, I said “Probably not.” At five months, I said “Yeah, I’d do it again. It wasn’t that bad.” My opinion now stays at, “Yes, I’d do it again.” Patrick is doing quite a bit better these days. Four months after surgery he went on a seven-day elk hunting expedition in Hell’s Canyon, Oregon. He shot a 700-pound elk in the bottom of the canyon and carried it in 100-pound pieces on his back one mile up the canyon to his camp. Seven times up, seven times down, with 100-pounds on his back. He couldn’t have done that back in May. After I heard Patrick tell me this, that’s when my opinion about “doing it again” really changed. It took my wife about as long to agree. After about 5 months of saying that she would never again agree to put our family through such suffering, she now says that we could do it again. Saving a friend’s life was worth the trouble!


Gretchen’s reflection

“Would you do it again? How have your thoughts evolved on this question over the past 6-7 months?”

    I am less positive about the prospect of doing the liver donation again than Tom is. This is mostly because it was unbearable to see the pain he was in, and especially to witness the agony he was in when he pulled the muscle laughing after we were home again. I feel so happy for Patrick, and feel privileged to have been a real part of saving someone’s life, but find it difficult to entertain putting Tom through the process again. Yet, I still know that it was the right decision, and I’m glad we followed through with it in the end. So, to sum up, I would recommend to someone to donate if they felt called to do so, as we did, but I think once in a lifetime is enough for us.


Tom’s Conclusion

    In January (6 months after surgery), Patrick had to return to Pittsburgh to remediate a narrowing bile duct in

his liver. This is fairly common and was an outpatient procedure. While he was in the area, Patrick and I went for a 4-mile cross-country skiing run where we climbed about 500 feet on skis and zoomed back down...no problem! Also that week, my wife, my son, Patrick’s mom and dad, Patrick, and I ate the elk that Patrick hunted! In February (7 months after surgery), Patrick secured a new job reintroducing endangered fish species into waterways. He thinks that it is great and actually likes it more than the job that he had before his liver degraded. In April (9 months after surgery), Patrick completed a 10K race and was pleased with his performance. Patrick and his wife are doing very well. Awesome!


    Gretchen is continuing her work as a dentist. Isaiah is walking and talking now. I am back to being a husband, father, and high-school teacher at 100% capacity! At the one year mark (June 2011), if I do a sit-up or swing on monkey bars at the playground I still feel a slight non-painful twinge (or pulling sensation). Yet, biking and hiking with Isaiah, swimming, lifting heavy objects (50 pounds plus), and playing basketball are all things I am doing regularly these days without hesitation. I do sometimes wonder when I have ailments (like a sore back), “Was that problem caused by the liver donation or would it have happened anyway?” I think that I may continue to ask this question when health problems arise in future years. I suppose that these kinds of thoughts will always linger in the back of my mind and my wife’s mind. However, these thoughts are always quickly overcome when I remember that Patrick is alive and doing well. Such thoughts seem to surface less frequently as more time passes.


    At my one-year transplant checkup I was given a clean bill of health. This summer has been a terrific summer for the whole family. Gretchen, Isaiah, and I have had many special times together riding bikes, swimming at the pool, visiting the zoo, going on rides at an amusement park, reading books together, going to church, running around in the yard, throwing rocks in a pond, climbing trees, and much more. Life is good!


We thank the Lord for guiding us through this whole process.


My e-mail address is gseibert99@hotmail.com. If you have further questions please e-mail me and (if you would like to talk) include your phone number and a good time (EST) to call.

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