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Gift from Daughter to Dad: a Liver Donation

Posted on March 27, 2013 by makalajohnson


Rating: 2.5/5 (6 votes cast)

Chuck Lewensten ran a successful business, hunted in Africa and played tennis with his fianc, Jill. Nonalcoholic steatohepatitis changed all that. By the summer of 2010, the disease had ravaged Lewenstens liver, leaving him homebound and dependent on his family for care. Instead of hunting trips, Lewenstens travels took him only to the emergency room. We were watching our dad die, says Amy Konsewicz, one of Lewenstens daughters. Thats when Konsewiczs sister called Mayo Clinic. The call led to appointments with several Mayo Clinic physicians, including Michael Charlton, M.D., a gastroenterologist. Dr. Charlton was so compassionate, says Jill. We felt like he cared and was going to do everything he could for Chuck. That included helping place Lewensten on the liver transplant waiting list. But Dr. Charlton also suggested another option: Living donation. Konsewicz says she and her three siblings were eager to donate, but she knew immediately that she would be the one. Testing proved her right; her blood type and liver size made her a compatible donor. But before surgery could take place, Lewensten needed to be convinced to accept the gift of life from his daughter. At first, he refused. But as his health deteriorated, and after much reflection and many conversations with his family and doctors, Lewensten relented.

Surgery took place on Oct. 5, 2010. Two years later, Lewensten walked Konsewicz down the aisle on her wedding day. At the reception, Konsewicz and her new husband held a dollar dance that raised close to $1,000 for Mayo Clinic. Konsewicz doesnt minimize her experience, which included post-surgical complications. But she says she would donate 100 times over again. Especially if she could donate at Mayo Clinic. Being at Mayo was one of the best experiences of my life, she says. Everyone there, from the doormen to the doctors, cares about human beings. Im a hospital snob now. Im constantly comparing, and theres no better place.

Our Miracle on 34th Street


Our story begins with a phone call from my Dad. He says he received the information on living liver donation from a hepatologist today. She told him it might be an option. "Can you stop by to pick up the papers?," he asks. "Sure, Dad," I say, "I'll be there this evening." As I hang up the phone, I recall the first time I mentioned living donation to my Dad about six months ago. I told him that I had read about parents giving their sick children part of their healthy livers. It was only about a month later when I discovered, while browsing the Internet, that adult related living liver donations were being performed at the University of Pennsylvania Hospital. I mentioned it to my father and asked him to find out about it on his next trip into the transplant clinic there. One day he called to tell me he wasn't a candidate because he mistakenly thought that he needed a whole liver transplant. I thought that was the final word until his call to me this afternoon. My husband, Marc, arrived home from work that evening and agreed to visit my Dad with me. When we arrived, there was an air of hopefulness and optimism. Dad and his fiancee were of the belief that this was the only solution and that it was quite a simple one at that. This concerned me because I knew from what I had already read that this may be a solution, but it wouldn't be simple or easy at all. I was not even sure that living donation would be an option for us. As we departed, we promised to read the paperwork and give it our consideration. We stopped in at a local Irish restaurant and ordered a late night dinner. Marc and I pored over the information and were amazed by what we read. "Medical science has surely come a long way," I commented. Marc nodded in agreement. We read an interesting fact that said the liver is the only organ in the body, other than the skin, which is capable of regenerating. Thank God for giving the liver this fascinating trait, I thought to myself. After dinner, I confided in Marc all my fears and concerns regarding living donation. I was worried that my liver would not be big enough, since I am several inches shorter than my Dad. I was also concerned about passing the myriad of tests which are necessary to assure that the donor is in good health and strong enough to undergo major surgery. We'd just read that two thirds of the potential donors are turned down for medical and other reasons. Marc was feeling quite upset, but was a little more comfortable after reading the bold printed statement which said that the donor can back out of the arrangement at any time up to the induction of anesthesia. We were impressed by the fact that living donor surgery remains the only area of medicine and surgery in which an operation is performed on an individual for whom it is not medically indicated. We considered the doctors' positions. They are, in fact, stepping out on a limb outside of the Hippocratic Oath to do no harm. We concluded that there is enormous responsibility that the transplant surgeons must accept when performing these transplants involving healthy living donors. I decided that I wanted to take the first step in finding out our options. Marc gave his approval with the understanding that we would use careful judgment in making our decisions along the way. The next morning I phoned my Dad's transplant coordinator to tell her I was interested in being a living donor for my father. Several days later she called back to set up a meeting with Dr. Abraham Shaked, the chief liver transplant surgeon at Penn. She asked me to bring my Dad along so that the doctor could have a look at the two of us and compare us physically. She told me that height and weight were important considerations and that the donor must be close in size to the recipient. She mentioned that the donor must donate the entire right lobe of the liver, approximately 55-60% of the total liver volume, to the recipient. The size of the donor liver must be big enough to share, she explained, so that both the recipient and donor portions could regenerate nicely. There was a week of waiting for our appointment with Dr. Shaked. During this time, Marc and I considered my father's situation. We could see that Dad was getting sicker as each day passed. We realized that Dad was dying and that he was running out of time. He had only been on the transplant waiting list for a few months, yet his disease had progressed to the final stages. He suffered from literally all the ill effects on the body that advanced liver disease causes. He had ascites, swelling of his abdomen with fluid, bleeding varices in his esophageal lining, yellowing and bruising of his skin due to his high bilirubin levels, and platelet loss in his

blood. In the last six months, he had been admitted several times to the ICU in our local hospital due to encephalopathy. During these horrifying events, my father was in a precomatic state. He was unresponsive because of the toxins in his blood, ones that his liver was unable to break down and rid his body of. The high ammonia levels in his brain confused his thought patterns at all times. It was when he became totally unaware of his surroundings and was unable to speak that it necessitated a trip to the hospital. He was unable to eat a regular diet. Proteins were a big problem for him. His liver could not handle them, yet the body requires a daily intake of these building blocks of life within every cell. After considering all this, Marc and I decided to help Dad in every way we could. We agreed to put our faith in God and in the surgeons whom He blesses with the talent and courage to save life whenever possible. It is Tuesday, November 28th, 2000. Today we meet the man who will possibly change our lives, the man who will hopefully give my father a new future, the man who might make our desperate situation disappear. God Almighty, please help us, is all I can think as I wait in anticipation. We enter Dr. Abraham Shaked's office. My Dad and Marc seem composed, but I am so nervous I feel like I cannot breathe. After a handshake, my nervousness dissipates. This man is the kindest doctor I have ever met. He is calm and welcoming. He is generous with his time and his whole being. He is honest and he acknowledges the man upstairs. Dr. Shaked tells us that eight living donor surgeries have been performed at Penn to date. He informs us that he came to University of PA from an established transplant unit at UCLA Medical Center and that he brought along Dr. Kim Olthoff to be his assistant chief of liver surgery. He mentions that the surgery is long and tedious. He says very frankly that there is a risk of death to the donor, about 1 in 500. He tells us about the liver's regenerative ability and that the process of regrowth is extremely quick. It takes only six to eight weeks, he says with a smile on his face. He explains that the new liver will not be anatomically correct, however, because the arteries and bile ducts must be shared with the recipient. It will simply grow into one larger left lobe, capable of performing all liver function, he informs us. We learn that the liver is responsible for all the digestion in the human body. We are told that Dad's liver would be completely removed and that he would be transplanted with my right liver lobe which would grow in him as well. Dad asks a question regarding the incision. Dr. Shaked describes the Mercedes scars which we may both be sporting in the future. First and foremost, the doctor says, the donor must be an exact blood type match to the recipient. That is, thank God, the case with Dad and me. We are both O positive. Next, Dr. Shaked outlines the donor testing that will be necessary before living donation can be considered a choice. He mentions an EKG, chest X-ray, MRI, and angiogram, and that other tests might be ordered later, if needed. He ends the meeting with a suggestion to consider all that he has explained. If we are interested, he says, we should call to proceed with the testing. He does not want a commitment for us yet. Then and there, I know that he is a wise man. This decision should not be an impulsive one. It occurs to me that this assures him that we will be accepting our responsibility in this, since I already realize that he will taking on plenty himself if we decide to go forward. We thank him for his time and for sharing a bit of his knowledge with us and depart. Thanks be to God, I pray, as we walk to the car. I feel like we may have an answer in sight and I am grateful. Two days later, again with Marc's okay, I call Dr. Shaked's secretary to tell her I would like to proceed with the tests. The whole month of December is filled with visits to the University of PA Hospital. My van learns to take me to 34th and Spruce on autopilot. I complete all the necessary blood tests, get a chest X-ray, EKG test, and an MRI. I meet with a hepatologist, Dr. Gillian Zeldin. She is concerned about my smoking and informs me to quit. She tells me to do it for my own health, regardless of this living donor thing. She is quite right and I appreciate her straightforward approach. No more smokes, I silently vow to myself. Doctor Zeldin orders a liver biopsy and pulmonary testing. I am also scheduled to meet with a social worker and psychiatrist. Christmas comes and goes without all the usual hoopla and on December 26th I go down to Penn for the angiogram. This is the most difficult test because it requires laying flat on your back for six hours afterward. Thank the Lord, my sister Stacie comes down from New York to accompany me. She is my only sister, eleven months younger than me, and is the best sister in the whole world as far as I can see. This is the first time that

I willingly allow her to take over the big sister role. On December 27th, my sister takes me to the hospital for the liver biopsy. Stacie reads to me as I lay in recovery and I am so happy that she is with me. Later that same day, Marc and I go back to meet with Dr. Shaked again. I tell him I am confused about the volume measurement of my liver and I need a reassurance that there is enough volume to share my liver with my Dad. He explains that the confusion was in the calculations performed by the radiologists and that my liver is indeed big enough to allow me to be my father's donor. I thank him for his time and say I guess I'll see you the day of surgery. On December 29th, I meet with the psychiatrist, Dr. Weinreeb. He is easy to talk to and simply wants to be certain that I am not feeling coerced in any way to proceed with the operation. I assure him that this is my decision, supported by Marc of course, and that the only pressure I feel is living within my own conscience. I share with him that I am slightly concerned over the fact that neither my Dad nor his fiancee seem to understand fully what is going to transpire. It is not that I want my Dad to understand what I am doing for him, but that I want him to be prepared for his long, possibly complicated recovery. Dr. Weinreeb informs me that it is not really my concern and that the transplant unit staff will be there for my Dad during his recovery. He tells me that I am taking more than enough responsibility in this. We also agree that my father is too ill to comprehend all that is happening, that his mind is confused and he could not possibly even understand his situation. I tell Dr. Weinreeb that I feel there is no choice for me, but to do the right thing. I must try to share with my father some of the life he has given me. I tell him that I that I have been blessed with a loving and supportive family and I am particularly lucky to have, at the age of 40, all four of my grandparents who spoiled me rotten when I was a kid and love me unconditionally. We say good-bye and he offers a firm handshake on my way out of the office. Later that day I go to get an echocardiogram. Dr. Shaked thinks this is in order because I am 40 years old. I don't really mind all the tests because I realize that this is all to insure a safer operation in the end. The New Year arrives with us barely noticing and on January 2nd Marc and I meet with Dr. Shaked's partner, Dr. Kim Olthoff. My husband expresses some last minute concerns and she offers her confidence to quell his fears. Between now and the operation, Dr. Olthoff asks me to bank my blood twice. This is a precaution for the operation since all the blood I lose will be put through a cell saver and given back to me. Again I realize that safety and carefulness are paramount to this team and I will obey all of the doctors' orders. We schedule the surgery for Thursday January 18th. I express my thanks for her time. She takes our hands into hers and I am grateful for her touch. She is much like Dr. Shaked, generous and caring. That is probably why they make such a strong team. They have been blessed with brilliant minds and courageous souls and I am at peace with being under their care. The morning of the operation arrives. Marc and I awake early and go to pick up my Dad. His fiancee comes along with us. We are all fairly calm considering the circumstances. When we arrive we are directed to the admissions unit, where I am prepared for the big surgery. The transport person comes to take me to the OR. My father comes over to kiss me and he tells me thank you. I notice a tear in his eye and I know that he understands. I am taken to the hallway outside the OR. Thank God my husband convinces the transport person to come with me. We sit and wait, communicating nonverbally. He holds my hands in his and I feel comforted. The anesthesiologist arrives. He assures me that I will be sleeping in a matter of minutes. I am given something to relax. The last thing I recall is sitting on the side of the bed awaiting the epidural. I awake to the pleasant experience of seeing my two surgeons, Drs. Shaked and Olthoff, at the side of my bed. Are they angels, I wonder? If so, they are very tired ones. Dr. Shaked's eyes look very strained and sore and I feel sorry for him. I realize that this is a kind gesture on their part, being there when I awaken. I am touched by their extreme generosity, even in the midst of my drugged stupor. Beyond being exceptionally good doctors, they are exceptionally good people and I will forever admire them and keep them in my prayers. The next thing I remember is seeing Marc and my Mom and proclaiming in total joy "I'm alive!" It didn't really occur to me consciously that I could die, but my subconscious must have been slightly worried.

The weeks following the operation are full of emotions which are difficult to explain to this day. There was the exhaustion, the gratefulness, the confusion, the joy. I was angry at myself for being in pain, for feeling nauseous, for being less than a strong and capable human being. I realized that God had spoiled me by giving me exceptionally good health, no colds, no flus, no real need to ever see a doctor. More than a year has passed. I am totally recovered and my post-transplant clinic visits have all gone well and my three month post-op MRI showed complete regeneration of my liver! My Dad is a stronger and healthier person now. He is not plagued with the fear of impending death. He is happier and grateful to God for giving him a second chance at life. He and I have become much closer because of our unique bond. I wish him peace and joy and happiness. I thank God for giving Marc and me the courage to take this leap of faith and for our family and friends who walked with us through this ordeal. I am especially grateful to Joe Canavan and Dan Reilly for sharing their experiences as living donors with me. Thank you for forging the trail for me and other donors to follow. I dedicate this story of life and love to my husband, Marc, who is always right there for me, to my mom, who nursed me back to health, to my sister, who supports all my dreams and to my best friend, Chris, who encourages me to find the truth. To my children- Linda, Chris and Paul - I love you and thank you for giving me my number one purpose in life, motherhood.

Jeremy Donates to his Dad


I believe that it is easy to say that you will do something as courageous as risking your health to save another person, but the reality of doing it is very difficult to confront. When thinking about my Dads physical condition as the result of Hepatitis C, there is no doubt that donating part of my liver to him was the right decision. However, arriving at that decision to donate a portion of my liver to my Dad was not easy. Ultimately, the decision to go though with the operation and donate a portion of my liver to my dad wasnt possible without the tremendous support of my family, friends, co-workers, and the organ transplant team at the University of Nebraska Medical Center. Pre Surgery: My Dad found out he had Hepatitis C when he went in for a doctors visit. My dad isnt a person to visit the doctors office for anything small, so there was a feeling that his health was getting to be a problem. By this time, my dad had a distended belly from aceties, due to liver failure. Over the next few months, his complexion became lighter, almost ghost-like. This is when I decided to begin the tests to find out if I could save his life. These tests involved various blood tests and scans to make sure I was a compatible and suitable donor for my dad. Surgery: My account beings the night before the surgery, on February 6th, 2008. I took the day off from work to complete the final preparation (blood labs, anesthesiology, and pre-operative routines) for the surgery. I spent the rest of the day taking it easy and trying not worry about the surgery (since I did plenty of that leading up to that date!). I also wanted to make sure I had plenty of sleep, since I knew the recovery from the operation would not be easy. The day of the surgery, February 7th, started with an early 5am wake-up call. I slept pretty well considering my fear of the liver donation surgery. Although I was a little bit scared before the surgery, the full realization of the surgery didnt occur to me until I arrived at the hospital. Even with all of the donor tests and information the transplant team gave me, I was still afraid of the uncertainty of the surgery and my Dads fate. I was close to terrified once I arrived at the hospital. From the hospital waiting room, the pre-operation routine began about 7am. They let my wife into the room, but they limited the number of people that went with me. The nurse prepared me for the surgery by putting an IV into my hand and cleaning/marking the area on my stomach where the incision would be. The Anesthesiologist then prepared me for the surgery, and as soon as I knew it, they asked Brandy to leave the room and I was asleep and ready for the operation. After the surgery, I woke up in a hospital bed, connected to a bunch of tubes with a variety of doctors and nurses around me. I do not remember falling asleep for the surgery, but I knew that I was back to life because of the pain I was in! The pain was result of muscle cramping from being on the operation table for multiple hours. This was the most painful point during my recovery. The doctors gave me some pain medicine and some fluid in my IV, which made the pain a lot more manageable. However, I was still in a lot of pain (about 8.5 of 10) as they moved me to ICU. I was in ICU Thursday and Friday night (A little more than 24hrs). The operation nurses put IVs in my neck and hand, a tube down my throat to help me breathe, and boots on my legs to prevent blood clots. The nurses in ICU were very attentive and nice, and they checked on my regularly (every 15 minutes or so). I couldnt drink or eat anything immediately after the surgery, but they gave me a styrofoam swab to keep my mouth and lips from getting to dry.

Once they took the tube out of my mouth and I could breathe on my own, they moved me into a regular hospital room, where I stayed for the next four days. The next four days in the hospital room had its ups-and-downs. I got out of my bed on the 3rd day and began to walk with assistance. The first time I got up to walk, I traveled about 20 yards or so. Every subsequent time I managed to get out of bed, I traveled a bit further. Eventually, I was able to walk around the hospital floor without any help. I was sick on the 2nd and 3rd day of my recovery in the regular hospital rooms. I wasnt eating very much, since I didnt have much of an appetite as a result of the surgery. On the 2nd day in the hospital room, I became very sick from the pain medicine. I continually needed to run to the restroom and I couldnt keep any solid food in my stomach. I eventually ate apples, oranges, and other light foods to get my stomach back to normal. By the time I left the hospital on the 4th day, I felt pretty good. There were many ups and downs in my recovery, and there will continue to be for my Dads recovery from Hepatitis C. However, there is no doubt that I would do this all again for him. There isnt anything in the world that compares to the feeling of giving the gift of life to another person, especially someone that you care about and love. This entry summarizes what I went through as a liver donor, from the morning of the surgery, until my release from the hospital six days later. Ill enter future journal entries to document my recovery after the surgery. Month 1 after the surgery: Its been exactly one month since the liver donation/transplant surgery and everything is going very well! My dad is making a great recovery. He makes routine visits to the hospital daily/bi-daily for blood tests, to make sure his medicine dosages are correct and to make sure his health is good. He stayed in the hospital for a few days last week because of an infection, but it was mostly for precautionary reasons. The doctors say that recurring hospital visits for the transplant recipient are a normal part of the liver recipients recovery and most visits are not too serious. My dad has a long journey to travel before he fully recovers from the transplant,, but all signs point toward the transplant and recovery being a success! As for me, I feel physically and mentally well. I spent a little more than three (well needed!) weeks at home recovering from the surgery. I didnt need very much help with my recovery, other than carrying objects greater than 20 pounds and doing other strenuous activities. My main concern during my stay at home was about becoming sick while my liver and body were recovering. But, Ive been lucky to have had nothing more than an average cold. Other than that, Ive been a bit sore, but I havent been in very much pain. I take regular walks and do exercises that the physical therapist at the hospital gave me. These activities, especially walking and back exercises, have helped me regain strength in doing regular activities and decrease the amount of sourness I have experienced. 1 Year: It is the one-year anniversary of the donation/transplant surgery, and everything is good! My dad is recovering well from his liver transplant surgery. My dad has regained most of the physical strength and general health he had before he lost his health. He still gets sick occasionally, but his visits to the hospital are infrequent and they are not nearly as urgent. In addition, the amount of medicine he takes is much less than the wide array of medications he took following the surgery. Now, he manages his hepatitis C virus by taking a variety of

medicines to protect his transplanted liver and anti-rejection medication to prevent donor liver rejection. Other than that, he maintains a low-sodium diet, is active, and he continues to regain his health. I believe that I have made a full recovery since the liver donor surgery last year. I still have some soreness on the right side of my stomach and occasional stomachaches, but I feel nearly as healthy as I did before the surgery. Ive also regained all of the physical strength I had prior the surgery. I do the all of the exercises I did before the surgery, such as weightlifting and rollerblading, without any problems and I maintain an active, happy lifestyle! Since the surgery, my dad has taken multiple vacations with my mom and he spends nearly every weekend playing with his grandchildren. Im glad that I had the opportunity to give the gift of health to my dad. With his recovering health, he can continue to appreciate his life, his family, and people that love him! I do not know if there is any gift you can give to another person that is more rewarding and worth the expense than the gift of health. The transplant has made my family closer than ever before, and I know that if I have extended my Dads life for any additional amount of time, every part of the journey was worth it.

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