Dancing through Life with a new Liver

One and a half years post liver transplant I feel extremely well, fortunate, happy and invigorated with life. I hadn’t dared to hope for such amazing results from a liver transplant and the related drugs.

I received the gift of life from someone who lost his or her life.  I have written and spoken about my transplant experience and have received remarkable positive feedback.

Hopefully you, or anyone close to you, will never be ill enough to need a transplant.  May I sincerely hope the sudden organ donor decision is never yours either.

I aim to raise awareness concerning organ donation and transplants.

Early December ’98 I found myself in Whangarei Hospital profusely haemorrhaging from one end and vomiting bowls full of blood from the other.  I was in serious trouble, feeling dreadful and hoping cross-matched blood was close.  As the Doctors rushed in the nurse announced "No blood pressure".  I really wanted to survive. Looking up I prayed, "Please I will do anything."  Then total blackness engulfed me.

Thinking back, I do not know when my ill health began. As a child the first sentence I learnt to say was "Sore tummy" and with ear infections dairy product allergy was an obvious diagnosis, but not in those days. Hip pain and pain after digesting fats were an integral part of my teenage and nursing training years.

Aged twenty-five, married with three children and extremely busy on our sheep and beef farm, I often felt very tired and ached with low-grade fevers of unknown origin.  Aerial chemical spray and fertiliser were spread seasonally over our house and farm contributing to deterioration of my condition.

After many years of medical specialists, examinations and tests the final diagnosis was autoimmune disease attacking the liver. Indocin capsules for ten years kept me mobile but eventually upset my digestive tract causing severe diarrhoea. The next step of "prednisone regimes" began with the many adverse effects. This would hopefully reduce the rate at which the autoimmune disease was inflaming and destroying the liver.

Approximately fifteen years later the prednisone dose was low so I discontinued it in favour of natural remedies. I felt much better without prednisone and threw myself into learning and using alternative therapies, hunting for a magic cure or helpful remedies.

Over the years my health declined and cirrhosis of the liver impaired natural body functions. This caused ascites (oedema and fluid in the abdominal cavity) and aldactone, a diuretic, became necessary.

Liver transplantation was mentioned as an end alternative but knowing nothing of recent developments it sounded too horrendous to contemplate. If successful, what life quality would I have? Maybe I could have a transplant and live with a drugged feeling? My ignorance almost cost me my life.

In mid 1998 my husband, Ken and I excited our senses with two months of overseas travel and visited our daughters, Andrea and Kendra, in Scotland. Back home I began vomiting blood and was treated in Whangarei Hospital for bleeding oesophageal varices by injection. The fifth bleed was very close to a fatality.

I was unconscious and unstable on life support in Intensive Care in Whangarei Hospital with liver failure, infected ascites and now lung infection.

A brain scan revealed no obvious damage and I had "A chance of surviving" if flown to Auckland liver specialists immediately. Ken was given half an hour to consent to a liver transplant or turning off the ventilator. He wanted me treated and to let me make the transplant decision. I have a husband who gets it right, well, when it’s important. I am also extremely grateful to the Northpower Rescue Helicopter Service and the pilot who risked flying with restricted visibility in windy, wet conditions. My chance to live was trickling away with time.

In Auckland Hospital Doctor Ed Gane immediately "banded" the bleeding oesophageal varices. (Put rubber bands on the enlarged veins in the stomach– like tailing a lamb.) He initiated intensive critical care treatment to give me a greater chance of surviving. Other doctors in both hospitals said it was, "Too late" for me, preparing Ken for the worst. For over a week the DCCM (Department of Critical Care Medicine) was our home.

After long struggling dreams consciousness slowly returned. I looked with double vision around a room of bright mirrors, which were windows, lights, tubes and noisy unfamiliar machines. I heard a strange three-eyed person ask if I knew where I was, to which I tried to reply "A spaceship". Not the right answer but I did wonder how I got to Auckland. I had longer periods awake and became curious about what was going on. "Is Ken playing bowls while I am lying here feeling horrible?" I didn’t remember the hours he had spent with me as I unattractively regained consciousness. I watched my stomach contents in a tube passing back and forth close to my eyes. With relief I watched the tubes and machines reducing in number and the worst ones disappearing. When boredom set in I meditated or line danced in my head. The critical care personal were wonderful to me as I lay listening to their Christmas party plans and goings-on.

My Critical Care nurse told me I had been very ill and to consider a liver transplant or - - - - well, - - nothing. I decided, "Yes" instantly without knowing any details.

The Liver Team introduced themselves and later outside my door I heard them boasting about doing eleven successful operations in ten months. Professor Stephen Munn is the Liver Team Director and one of the surgeons. John McCall, who became my surgeon, operates very successfully and instills confidence with his intensive post-operative care. The transplant operation usually takes 8 to12 hours depending on complications. Dr Ed Gane is a brilliant hepatologist and adjusts the medication. 

This successful Auckland Liver Transplant Team of Specialists and Doctors has two co-ordinators, a social worker, a physiotherapist, dieticians, office staff and specially trained nurses. They are a brilliant motivated team of wonderful individuals. All are experienced professionals with genuine concern for the people in their care. I found their reassuring manner valuable and it aided my recovery. All questions I asked were answered to my satisfaction. Some things I didn’t wish to know.

The N.Z. Liver Team began transplanting livers in Feb’98: lucky me. Previously people travelled to Australia for a liver transplant, if well enough. Organization, waiting in Brisbane and recovering close to specialists took almost a year. I fortunately gained from the foresight and dedicated work of many people. The Lions Club raised funds for essential equipment, staff training and more recently a house for patient accommodation.

Assessment week began immediately while I recuperated. This is to evaluate a patient’s condition for a successful liver transplant. Hopefully nothing sinister would be revealed in these intensive medical investigations. A specialist had previously considered me unsuitable for transplantation so I began the week with some concern. Without a transplant how many months could I last? I was physically weak, still unwell and feeling overwhelmed by the circumstances. I felt vulnerable as my mental and emotional states were also under constant assessment. Everyone was extremely helpful and kind to me and I slowly regained strength.

At a Liver Team meeting I was approved for transplantation. Great! Another chance to embody life. Government Funding was granted. $130,000 for the transplant, three months post transplant care, travel and accommodation.

Health and strength for my operation had top priority. I was told to compare a liver transplant to putting a reconditioned motor in a car. It will be more successful if the car body is in good condition before the engine replacement. Exercise and diets had always been top on my "list of hates" but the enthusiastic physiotherapist and dedicated dietician won me over, eventually.

I began the waiting period as 7th on the 0+ blood group waiting list. I thought this must be the easiest part of the whole transplant process. Carry a pager and wait for a phone call. I knew three transplants had been done in one week as livers became available, reaffirming the unpredictability of life.

As Ken and I waited at home our first grandchild arrived January 25th 1999, a beautiful girl. Our daughter’s wedding in March was pleasurable and moving and didn’t coincide with my transplant. I had high curiosity value in the community and many common and weird questions were asked regarding organ donation and transplantation. The answers and explanations I gave were often followed by recounts of touching personal stories about life and death. This actually helped me process my feelings, beliefs and attitudes.

The phone call was at midnight, early October as Ken and I slumbered unaware of recent decisions. My co-ordinator, Dawn, said they had a very good liver for me. Then it hit me that this is really "It" after a ten-month wait in an "Ever ready state." It was almost an anticlimax as I had been backup patient to three previous transplants. Healthy donated livers are too precious to waste. With a shelf life of only 12 hours a second recipient is often fully prepared and waits until the surgeon is sure all is well with the opened patient. No food or water for more than 12 hours, and the suspense, became part of my pre transplant drama.

New Zealand and Australia have a reciprocal agreement to exchange livers in emergencies. This fact is reassuring while waiting in a deteriorating condition.

My new liver had to be offered to New South Wales and to my great relief wasn’t required. A previous debt was then considered paid back by New Zealand.

At 2 am my theatre preparations began and after a shower I dressed in theatre gear to wait. Ken watched television while I slept for short intervals between various medical staff’s visits. I could only guess at the preparation for my operation that was happening in other parts of the hospital. I phoned my son Gregor, an aura healer, for extra assistance and to let him know he was also caring for the farm. At approximately 8 am I swallowed pre medication pills and lay back in a lazy-boy chair beside my husband.

When I next became aware, I was lying comfortably in the Critical Care Unit, Ken was stroking my arm and lots of machines, tubes, and busy people were present. Realising the transplant had been done I felt eternal gratitude towards the donor and donor’s family. I felt completely at ease with someone’s organ inside me. It may be second hand but to me it’s my new liver. Pre operatively I had tried to imagine what an implanted liver would feel like but didn’t succeed as there is no special feeling. I was impressed to learn that the transplanted liver begins functioning by changing colour as soon as it’s connected to its new blood supply. My first normal liver function blood test for decades was a thrill. Each normal test still gives a me an unreal buzz.

I was pleasantly surprised this traumatic operation was not very painful, though a morphine pump for a few days was probably responsible for that initially.

The Mercedes Benz incision healed in a few days leaving an impressively long Y-up-side-down scar under the ribs. Moving from lying to standing was very guarded for a week and that improved with time. A bile drain was left inserted for checking purposes and was trouble free, apart from overflows.

About the 5th day I experienced moderate rejection of the transplanted liver that was detected by the daily blood tests. This is expected in ¾ of liver transplants, especially if the immune system is healthy. I was treated with steroids intravenously for three days, ½ an hour daily, which was unpleasant due to the high dose of steroids required. This is the only rejection episode that has occurred in one and a half years. Rejection varies with each individual from no rejection to requiring another transplant.

The world liver transplant success rate is 90.1% at 1 year.

The N.Z. Liver Unit has a 97.1% success rate at 1 year.

The longest post-liver transplant survivor is 30 years. An 85th birthday will do me nicely or perhaps a few more if I am active and enjoying life.

I was Northland’s first liver transplant and New Zealand’s 33rd.

I am included in an Auckland University research program studying pre and post liver transplant nutrition. I have also answered a questionnaire for a thesis studying the life quality of organ recipients. My diseased liver had a working capacity of approximately 10%. It is kept for research in a laboratory freezer and can be visited if desired.

Last year a Liver Transplant Group was formed for pre and post transplant patients, carers and families, to give support, gather and disperse information and share experiences. We all realise death had been imminent without a transplant and now frequently feel and express appreciation for a quality life. A kidney recipient opposite me in hospital talked gratitude several times every day and always added to me, "We were gonners."

After 8 ½ days in hospital I moved into the motel with Ken and we went supermarket shopping. I marvelled at the smooth transition from a creaking invalid to an enlivened woman with a future. My sister, Melva drove from Nelson to be my out-of-hospital support person for 6 weeks which I really appreciated. Feeling at home in Epsom we had a perfect situation - husbands and adult children home working, a city of entertainment, a car, a visa and imagination. At first I was slow shopping but thankfully my strength steadily increased. Our life included fortnightly blood tests and hospital clinic appointments, physiotherapy three times a week, twice daily medication, daily walks, supermarket shopping often, valued phone calls or visits from family or friends, periods for rest and lots of sister talks.

Restrictions are few and relate to suppressing the immune system that naturally treats the new liver as a foreign body to be rejected or destroyed. The revolutionary new immunosuppression drug Tacrolimus or Prograf must be taken 12 hourly regularly, without food to aid absorption. The dose is adjusted by blood test results and is checked daily until balanced then less often and now monthly. I take 5mg twice daily between 9 –9.30.

The side effects of Tacrolimus I experience are sun-sensitivity and a slight tremor that doesn’t help when applying lipstick and other fine movement activities.

I have a fair Celtic complexion and skin cancer so I need to be extra vigilant with sun protection. With the ever-present tacrolimus sun-sensitivity issue and living in Northland, keeping out of the sun is far bigger issue for me than I had originally considered. I feel safer wearing a Medic Alert necklace as in emergencies my medical records can be accessed immediately.

As immune suppression therapy is essential the risk of infections, cancers and injuries is increased and serious. Immediate medical treatment is usually necessary to avoid complications. An old splinter in my shin resulted in two operations, several biopsies and medication changes for three months as a serious fungal infection was present. This made me realise the seriousness of living on the edge. Colitis is my only on-going medical problem requiring additional medication.

My daughters were living overseas when I fell ill and again when I was transplanted. They were relying on other people’s versions of how I was which they found difficult and worrying. It was a relief for them, and me, when we were able to have a ½ hour discussion on the phone.

There were times when family relationships were stressed during my illness, operation and rehabilitation but we are now closer and deeply appreciate one another. I am amazed at the kindness and thoughtfulness of people I didn’t know, knew slightly or thought I knew and the many ways they helped me to feel good and to gain health. Feeling energetic and having vitality are my greatest assets.

Two months after the operation I was home in time to enjoy our Line Dancing Christmas Party, eating, dancing and laughing with friends. They kindly asked the whereabouts of my wheelchair, scrutinised me for changes, inquired about my medication and questioned me about diet restrictions as I choose food freely from the table. They were afraid the new liver might fall on the floor, or bleed, while I was dancing and I had many other notions to dispel.

My most unexpected life change is enjoying working-out at the gym, especially when it’s followed by a sauna and coffee at a favourite café with friends.

I am often overwhelmed at my good fortune and deeply appreciate the wholesomeness of life. I often wonder if donor families realise the value of their gift.

The deep appreciation of all recipients is overpowering.

It can only be expressed personally in "no name" letters through the Liver co-ordinator and then Donor co-ordinator. They contact the family to ask if they want the letter, if not it is returned to the sender, which rarely happens.

In my significant, difficult to write Thank you letter I told the donor family that the donated liver has given me a healthy, happy life when death was imminent. I sent them blessings to heal their grief and wished them well for the future. I expressed my sincere deep feelings of eternal gratitude for their humanitarian gift.

Transplants are not the sustainable answer to our health problems but are a breathing space in which to evaluate the essence of our existence.

For years an area of specific interest to me has been the spiritual realm.

In our society we are not generally taught how to die or what to do at death. Shock and confusion usually occur especially at accidents and sudden deaths. The soul’s spirit may stay at the place of death, wander off or follow their body. At death we need to know to look up to the bright light and go towards it to peace.

After transplantation the donor spirits are usually present to communicate with. They attach easily to organ recipients in a new relationship. Recipients feel the donor’s presence and emotions then wonder, "What is wrong with me?" Communication and discussion with the donor’s spirit about the situation is usually all that is needed. I tuned into my donor’s spirit, had a deep discussion about our new relationship and promised to return the ethereal liver when I die. I directed the donor up to the light and we contentedly parted for now.

My life is full of what I wish. Our two grand daughters are a delight and I have energy to fully participate in family activities. Overseas travel features high on our agenda as our grandson has just been born in London. I am enjoying landscaping our garden and have 100 holes to dig to plant my new native trees. I happily follow my husband’s farming and forestry activities assisting where I can. The recent challenge of acquiring computer literacy is both frustrating and rewarding. Genealogy is calling me as I support my friend who is writing her family’s history book.

Recently, filling in a form required operations to be listed. I wrote hysterectomy as I have done for nearly 20 years, then had a feeling there was another. I had completely forgotten my liver transplant proving it is history!

I greatly appreciate the help of many exceptional people including all medical personal, my family and friends and especially my donor and family who made it all possible. They all have my ultimate gratitude and frequent thanks for my existence in this world.

Thank you for sharing my story.

Kind regards Pam Robinson