My Liver Transplant Experience May 11, 1993

I started writing my story April 2, 1994. As I write this introduction of my life after surgery from a liver transplantation, I think of the long, hard road uphill. I was told by the Doctors from the University of Chicago, that I would have some good days and some bad days. This would be due to the medications I will be on the rest of my life, and believe me, they weren't kidding. I thought the Doctors were God. Transplant was beyond my comprehension and I worked in a hospital. Transplant was not in my vocabulary, and I knew of no one who ever had a transplant performed. To me; having my life back and a second chance of life, was a miracle. In reality, after having much time to think about life and death, these were only Doctors, not God, specialized to do transplantation. The most critical part being, able to secure a liver with the right blood type and size, and my own will to live!

The care was excellent and the Transplant Team was superb. My chief surgeon was Dr. James Piper. Dr. Newell played a part, possibly in securing the organ, memory escapes me. Dr. Alfred Baker, along with Dr. Greg Galler, and the Transplant Coordinator RN MSN, Kathy Dasgupta were all great, although Dr. Galler seemed to play games with us, by not giving my fiancé at the time, direct answers. It seems, if he didn't know the answers, it would have been better to say he didn't know. Instead, he would beat around the bush. Well, enough said about that for awhile.

I must tell everyone a little about myself before continuing. My name again is Marylin, (my maiden name is Haskell), I was married in 1975, mutual divorce in 1989. I love to travel, although financially it's not as easy anymore. I was always active, vivacious, and loved life. I was always helping my family and was very generous with money. I would give the shirt off my back to help someone in need. I worked in a hospital for 20 years as an X-Ray Technologist, and most of those years, my primary field was Mammography. I was innovative and had a real interest in the study of breast cancer, whereas today, technologists go into the field to escape doing the barium enema exams, rotating shifts, and some of the more difficult escapades in an x-ray department. I had two aunts who developed breast cancer, and one of them, I had to do an exam on. I was in shock when I saw how advanced the cancer had become. I don't even know if my own mother would have developed breast cancer, because she was only 47 when she passed away from uterine cancer. My mother's family woke up and everyone was checked. Another aunt had breast cancer, but it was caught early, and even to this day she is still alive. Another aunt developed colon cancer and then pancreas cancer and passed away. Another aunt developed problems with her kidney and is still living. I enjoyed my job, and was very dedicated to my profession. I was a rarity of an individual. I actually enjoyed every aspect of my job, I was the only one who knew my job and knew it well. I was always healthy and never called off work.. I have to say I was what every department was looking for. Looking back, I was really spoiled. Where does one find job security anymore? The job market has changed. I always insisted I needed to train other techs in case I did get sick, but the effort was futile for many years. I could more or less schedule my own patients, set my own hours, times were very flexible. I gained a lifetime of friends from the hospital, and a great education. I was never refused, when wanting to go to seminars and this kept me abreast in my field of mammography. This is where the traveling came from. When I would go to a seminar, I would also take some vacation days to enjoy the area. I have been to Palm Springs, Ca., Anaheim, Ca., Steamboat Springs, Co., Orlando, Fl., Milwaukee, Wisc., and several places locally in Chicago. The hospital usually paid half the expenses. It was the seminars that kept my interest going, and with the support of our Radiologists, I helped to start needle localizations in Northwest Indiana. This was a procedure performed in x-ray prior to a lumpectomy, much easier and more accurate for a palpable lump. This was not a radical procedure and salvaged the breast tissue from being butchered. I felt at this point, I was contributing to society. I felt good about myself and finally had such rapport with the patients, they would ask for me by name. There was no other word but, Wow, this is a great feeling, I am invincible. I eventually got more help and our director, along with others, and I developed a Women's Center with a Mammography unit. This was the ultimate goal, but it wasn't a money maker, so the office was turned into physicians offices. Oh well, we now had two mammography units at the hospital and this is when I started to deteriorate. I remember the day, and it started at the end of the day, with a dizzy spell. One of our special procedure nurses, saw me, and reported it to my supervisor. I went to the employee health nurse and she ordered lab work , since my annual labs were almost due. I had them the next day, the month was March, I believe and the results came back the same day. The nurse called me and said it was urgent! I was hysterical and in shock when she told me I needed to see an internist. Everything was off the chart. How could this be? I sought the advice of one of our Radiologist, and asked him to call for me. I got in to see Dr. James Monks. He was understanding, kind, and a good Christian man. He ran every test he could think of, to rule out Epstein-Barr, mono, hepatitis, and the like. All tests came back negative. I was having lab work done once a week, and slowly all enzymes were climbing. I was told to take a leave of absence and get some rest. Two weeks went by and I decided to ask my doctor if I could go to Florida on vacation, no problem, but I never told him I was driving to Florida. My sister went with me and I drove. My oldest sister lives in Florida, and she was shocked when I arrived. She said I had a nice tan, and I wasn't in the sun at all in April, especially here in Indiana. It was Easter weekend, and after one week, it was time to leave Florida. I found it very difficult driving back.. I developed a pain in the area of the pancreas, but managed to arrive home safely. I had an appointment the next day, and the doctor ordered an ultrasound of the liver, pancreas, gallbladder, and kidneys. Apparently, something was happening with the liver, and my lab results were rising, all levels. Within one week, I couldn't eat, nothing was appealing to me. I was by myself, unable to eat, the doctor told me to try ensure, a liquid protein drink, but nothing would stay down. I could call him anytime of the day or night, he was wonderful. Dr. Monks even suggested that I consult Dr. Alfred Baker at the University of Chicago. He even offered to drive me, but I asked for someone more local. I saw a Dr. Merz in Munster, IN. I had to be wheeled in by my Sister-in-law, Evelyn. I was confused at this time, and don't recall what was said. I did not understand the seriousness of my illness, most likely because I always had the fear of dying young and I felt, maybe this was my time. Both my parents died young and to me it would be ok .Unfortunately, I was becoming delirious, terribly confused, and could not focus on dialing phone numbers. I bought a new phone, and did not become accustomed to using it. I tried to call my sisters, but became disoriented. I managed to call work and talked to my friend, Donna and she called my family. My brother-in law stopped over on his way to work, and he found me doubled up in pain and said I was going to the emergency room. I said, no way, I work there. Boy, was I stupid then. Archie called an ambulance. I was taken to St. Margaret Mercy, North Campus, in Hammond, IN., Thursday, May 6th, 1993. Dr. Monks had arrived also, and an Ultrasound of the liver was done. My friends and the Radiologists all were in shock, especially Dr. Doshi who was taken aback, because my liver shrunk twice the size of normal, and he knew my chances of survival were slim. Naturally, I was admitted while Dr. Monks went to work getting all my medical records together. My friend, Mike, soon to be fiancé stepped in and said someone needed to step in as a power of attorney, because I wasn't coherent and legally could not sign papers. Evelyn stepped in, she was the strongest. I had friends come during the night, Pat Lewis and Angie Padilla stayed the night, they kept watch and prayed for me. I was nearly in a coma. I vaguely remember their presence. Today, I am forever grateful. The next day, I was transferred to the U of C, Friday morning, May 7th. I remember the ride over, and Evelyn was by my side. It was extremely bumpy and I was burning up. Maybe I had a fever, I don't know. A liver workup was done and I was put on the transplant list. I was suffering from acute liver failure, to this day, no one knows what caused the liver to shut down. I was not in control and did not understand that I would need a transplant. I had what is called, hepatic encephalopathy, this happens when the ammonia levels get very high. I was very critical, as are most transplant patients before surgery takes place. There's a fine line and all factors are weighed as to the outcome. There are at least seven members that sit on a board that decide who will get the organ available. 1. Surgeon 2. Clergy 3. General Liver Specialist 4. Nurse 5. Social Service 6. General Doctor 7. Attorney or other Medical Personnel

I was treated with the best care, despite my split personality at this time. Meaning, the worse side of me came out. I was so stubborn and combative, not realizing the extent of my illness. The nurses and doctors, really had no idea what the good side was like. I remember the enemas, the nystatin, the horsesize tablets, and all the tests before and after the surgery. These nurses had an awful lot of patience!

The weekend came, three or four livers came in, but the doctors told me they were not good enough for me. I needed a full size liver and close to perfect match. I was a little disappointed, but so what. My brother Rich, Bob, and their wives, even my sister Lora and Wendy came to see me. There was a lot of crying going on, but I was oblivious to it all. Mike would visit me often. He would sit for hours holding my hand. He also proposed to me, and I believe this gave me hope and a stronger will to live.

Then the day came, Tuesday, May 11, 1993, around 1:15 PM, Dr. Piper came in my room and said he had a liver for me. I was scared at first and wondering, "How long will I live for after a transplant?" I was not aware of the technology today and the side effects from all the medications. But of course, I was never one of those suffering individuals either. I was a healthy x-ray technologist working in a hospital setting for 20 years and very active in sports. I loved to ride my bicycle at least 10 miles a day. I participated in a century event.

After having the transplant, I actually felt as if I had become "Frankenstein" and being told later that my donor was a 35 year old female who had four children, a bicycle rider, a good Christian woman and lived in Aurora, IL. made me wonder, if I was going to take on her features and characteristics. She was much taller, 5'7" compared to 4'11 3/4" and a full formed lady, not petite, like myself. I remember being shown the liver prior to surgery, or was I really hallucinating, being that I worked in the medical field, I'll never know for sure.

It took me nearly a year to write to the donor's family, not a day went by that I didn't think of their pain, losing a wife, mother, and niece. I always wanted to meet the family, but I'm sure it was much more painful for her husband. Anyway, I received a beautiful letter back from an aunt on her Husband's side, who was more like a sister to my donor. It is as follows.

From a family member(Aunt) of Your Angel

When you called her an angel, you were right. She was a very devoted Christian. Her and her husband both raised their four children 2 girls and 2 boys in the church.

She loved to paint Precious moments on sweatshirts. Last year, she spent 40 hours hand painting them for her Sunday school class room. In them, a part of her will always be with us.

She loved to ride her bike. Her and her husband rode eight miles a day. She walked six. She was a beautiful girl with golden blonde hair to her waist. It truly looked like angel hair.

She had taken E.M.T. classes and had a 98% avg. She loved it so much. She wanted to be able to help people who were hurt.

She was very good with kids. She never worked till the last three months, March, April, May, of 1993. Her kids were all in school and she helped as a part time cook at the Junior High.

Her loss is very hard for me. But from your letter I feel so grateful that a part of her is living on.

I know it must have been hard for you to write your letter. But, I am so thankful you did. May God always Bless You. Thank You for your letter. God Bless Her Aunt

P.S. Maybe I should have told you, I'm an aunt on her husband's side. She was more like my sister.

My experience from my liver transplant was exceptional, I am told. My condition was acute liver failure, and my body was in excellent condition prior to the surgery, since my other organs didn't deteriorate yet. I was walking within 24 hours of surgery. My surgery took only 6 hours and only 1 unit of blood was needed. I was walking with 4 IV's poles and a nurse by my side. The embarrassing moment was wearing the diapers, they were so large, that they would fall off of me. I became so frustrated and started to ask for a pediatric bed, smaller needles, gowns, but remember, I also lost 30 lbs. The weight loss is common. Although I was walking, my feet were not touching the ground mentally, because I was still very delirious until my ammonia levels started dropping. I was out of the hospital in seven days.

My co-workers, administrators, Radiologists, Physicians on staff at the U of C, family members, and relatives, and friends all sent beautiful sprays of flowers, my sister Shirley, sent my favorite yellow roses, and flowers kept coming until I was home.

I made an impression on everyone's life and woke up the reality of possible death at any time. Many of my friends and relatives signed the back of their donor card and understood the need and the importance, now, that it struck so close to home. I became a celebrity at work, because I was the only known Transplant Recipient from St. Margaret's. Several of my friends got together to hold bake sales for me. I have to admit it was a hard battle, and I had to fight to get better, but with each day, I am grateful.

There are several changes a recipient goes through. From my own experience, my nightmares and hallucinations were caused by the high doses of medications. I would go through a ritual of death, preparing myself in my finest robe and covering myself with a white bed sheet as if I was dead. I would dream, I don't think I actually shut off my IV pumps. When the nurses came in and saw me covered with a sheet, they would say, "Girl, what are you doing?", I replied, "Let me die, I am so tired, I want to die." They laughed, and said " Girl, you're going to live and get married." I didn't realize I had my transplant and was improving every day. My color was normal, my hair was not ashen in color, and the whites of my eyes were so bright, it was a miracle. How could this be? My hands were trembling, my lips were numb, and what kind of life could I possibly have now? Could I ever return to work? Lots of questions, all to be answered in my follow-up visits to the clinic.

Most recipients are prepared or given pamphlets on the transplantation journey, in order to understand what will happen to them after transplant.

I was in the dark because my liver failure was acute, and because of my incoherent condition. I didn't know where I was or what year it was. I did know my name. I was so use to having only one doctor, and when three groups of doctors came in to check in on me, I was thoroughly confused. I was paranoid and thought the doctors were out to kill me. I can laugh about it now, because I realize this experience didn't happen to me alone. Also, the machines, equipment, and the monitors in the room played havoc on my mind, especially when I was alone and when it was very quiet. One of my more unpleasant experiences was when I could hear a nurse in the next room with a patient. We were separated by a partial wall and the rest was glass. I could not see anything but the lights in the room and hear the voices of impending death at the last stages. This moment brought me to realize my own immortality. To help silence the cries, I had a music box I would continually wind to soothe my mind. Death finally came to the unknown woman next door. I heard the sounds of defecation and the ending of breath sounds. The nurse cried and promised this woman she would clean her up and make her presentable for her family. The nurse said she would go to heaven and the lady was in God's hands. I cried too, and remember being transferred shortly after, only to be visited by social services, but I felt she really couldn't relate. I told my whole family about this experience. I felt terrified.

Well, I did improve by walking everywhere in the hospital. I wanted out. The sooner you walk, eat, and have that first bowel movement, the sooner you'll get out. The doctors said I could leave in 7 days, but they let me stay for 10. I didn't have my head altogether, and still quite fuzzy. When I would step from my bed, I felt as if I was floating on air, and thought , how could I function at home? I had no one, so I thought. I stayed at my brother's (Rich) house for 1-2 weeks, and then it was time for me to manage on my own. I went home, boxed up my things, had a big garage sale, and thought I wouldn't live very long. My friend, Mike, still wanted to marry me, and so I planned our wedding. The most important thing was going to clinic once a week for one to two months.

Three months after transplant, I was married, had a reception one month later, and one month after that, I returned to work, same capacity and had a relapse, chronic rejection in December, 1993 just after my birthday. I had stenosis of the bile ducts. This can occur in patients when the donor duct is connected to the recipient's. Today, there is a procedure to avoid this problem, my luck. I had an OP procedure, Transhepatic Cholangiogram in Radiology. Unfortunately, my luck was changing, the radiologist, Dr. Hackworth, ruptured my bile duct and I had to be admitted. Severe pain developed, and I had to have a CT, Ultrasound, and blood cultures to determine the extent of the damage. I had pockets of bile in my abdomen. It was called a bilioma. The doctors tried to put a drainage tube in, but nothing was draining. They talked of putting in a stent, and other options. This was a lengthy stay of 33 days and during the holiday season. My husband and stepson, Kalen did not take down our tree or open presents until I came home. My depression was so bad, I would cry at night, I was bored, and the regular doctors were not there because it was the holiday season, Christmas and New Year. I had a drastic weight reduction and I couldn't raise my arms to hold a glass. I felt this was the worst time of my life, because I was experiencing pain. With the transplant, there was little pain. My husband and I had to fight to go home, and I could get better care at home. So it was. My family and I celebrated Christmas and life returned to near normalcy for awhile.

The same year, I suffered from appendicitis. I had an appendectomy performed by Dr. Russell Pellar who worked closely with Dr. Monks and my transplant team, and then I tried returning to work. I had such difficulty with my boss, Mr. Richard Peterson and the hospital that I started to file with the EEOC. They were on the side of the hospital. The whole process was too stressful and I decided I didn't need this. I decided to resign after 20 years of service. My feelings ran strong. My husband felt strongly about a lawsuit, but he worked at the same hospital, and I didn't want to hurt any of his advances. I needed to do this for me, and I wasn't ready to take on a hospital and a corporation. I backed down.

I still continue to work, but it is at a clinic. There is less stress and more flexible hours. I have to return to the hospital for my lab draws due to insurance, but I feel it was there loss. The hospital threw a big party for me. The hospital administrators took me to my favorite restaurant and presented me with a gold watch. It took 21/2 years for my old boss to say how much of an asset I was, and that he was sorry for the treatment I received from him and the hospital. I have moved on, and if I have learned from this, it would be to take a moment and breathe life, see it, feel it, experience it, and don't take it for granted Slow yourself down, and don't stress yourself out and look to a higher power for strength.

I always worried about how long I would live after transplant, only to realize 5 years later now, I need a 2nd liver transplant. I'm told I have stenosis of the bile ducts and have had to have angioplasty of the bile ducts(ballooning of the ducts) since February, 1998 and is still ongoing, next visit is Sept, 1998.

Since June of 1994, I joined a transplant awareness group in Northwest, IN. It's located in Merrillville, IN. We call it T.A.G. and I happen to be writer and editor of our monthly newsletter. Our group has 111 members and we have various speakers at our meetings held once a month.

In general no recipients are the same. Side effects are usually caused by the medications and can be dependent on dosage. Common effects are skin rashes, headaches, itching of hands or feet, trembling of hands, hair loss with Prograf or CellCept, increase in hair with Neoral or Cyclosporin, swelling of extremities, roundness of face on prednisone, or increase in blood pressure to name a few.

The doctors don't generally mention these unless you ask the questions or have problems. In my case, I had a liver transplant, and I have a scar I use to show to everyone I knew. It's barely visible, and known as a Mercedes scar because it looks like an upside down Y. There is general paresis around the scar lasting sometimes a year or indefinitely. Follow up care is so important because dosage can be adjusted to reduce some of the side effects, bi-weekly, 3 months, 6 months, 1year, and then whenever problems occur. Lab work must be on a continuing basis to prevent any problems early on. Transplant recipients are at risk for developing CA, heart problems, urinary problems, catching colds from others because we are now immunosuppressed. Another reason, follow ups are so important.