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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 pre-comatic 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.
© 2002 International Association of Living Organ Donors, Inc.