Consulting Editor:
Val Honeyman,
NZLTU

Editor:
Bethli Wainwright

Please e-mail or mail contributions to the Editor:

Bethli Wainwright
5A Eyre Street
Henderson Heights
Auckland
NEW ZEALAND

Phone / Fax:
(09) 836-7107

This issue has been sponsored by Sanitarium.

A highlight of April was the Service of Thanksgiving at the Auckland Cathedral on the 29^th April. This was a moving experience. The line of recipients going forward to light a candle in memory of their Donor, and the number of donor families who went forward to receive a gift of a Camellia plant called "Donation" were two unforgettable images. It was lovely being able to meet with other recipients and donor families after the service, and a particular thrill to see so many happy and healthy liver transplant recipients. Janice and Ralph from the Transplant Donor Co-ordinators office did a great job organising this special occasion.

A very special story has been shared with us in this issue. The story of a young Kiwi woman, Kerry, who became an organ donor, will touch you. This moving story has been written by her brother. I hope you enjoy this issue of your newsletter, and keep those contributions coming!!

On the evening of Tuesday April 10, the second meeting of the Liver Transplant Caregivers Group was held at the NZLTU, Auckland Hospital. Seven caregivers attended, with Ron Benjamin as facilitator. Many different topics were discussed, including how caregivers themselves have coped or are coping with the situations before, during, and after transplant. Every caregiver had a different experience to share, and again it was felt that the meeting was very helpful and supportive.

Notes taken by Robin Wainwright.

Celebrating liver transplant anniversaries in May and June are:

1. Murray W, May. 1 year.
2. Irvine H, May. 4 years.
3. Peter M, May. 1 year.
4. Oliver P, May. 1 year.
5. Noelle S, June. 1 year.

Kerry and Deb had just assembled the new gas barbeque. It was the barbeque for the new millennium and the plan was for Kerry to cook tea on it that night. They shot down to the local hotel for a quick drink. Deb left about 7pm and Kerry stayed on chatting to friends, making plans for their millennium night celebrations. At about 9:20pm Kerry suddenly felt sick and went outside to get some fresh air. She was seen to stagger as she exited the hotel, collapsed unconscious, had a seizure and stopped breathing before the ambulance arrived. A second ambulance was dispatched once bystanders realised Kerry was not breathing. The first ambulance to arrive found Kerry lying unconscious on her side but now breathing. Her speech was slurred and incoherent but she would open her eyes when spoken to. She was taken to hospital by ambulance.

As Kerry was being taken to hospital, her concerned friends rang our family. Deb rang about 10pm to tell me what was happening while Mum and Dad made their way to hospital. Deb and I joked about it really cos it couldn’t be anything serious, after all Kerry was in perfect health.

Kerry was restless in the emergency department and was eventually restrained. Emergency department staff tested for drugs. During this time Kerry developed a headache, refusing any form of pain relief as she had had a few drinks. She continuously asked for mum to take her home. One nurse in particular was unsympathetic to Kerry because of the alcohol involvement. It was obvious she assumed Kerry was just drunk. She was rude, hostile and said some hurtful comments to and about Kerry that to this day bring tears to our eyes. A doctor decided that Kerry was intoxicated with the possibility of other drugs and that she should stay in the emergency department until she could fend for herself. With this my parents left for home expecting a phone call to come and collect her later.

Around 00:45am Kerry deteriorated in the emergency department. About 1:30am our family were rung to say that Kerry had deteriorated and was on the way to have a scan of her brain. Deborah rang me to say things were not sounding very good at all.

At 2am Medical staff explained the seriousness of Kerry’s condition to me. She had a large bleed from a ruptured artery in her brain. Options included flying her to Wellington should she show some improvement for surgery. What was I to do? Stay or go? This couldn’t be that serious surely? Not Kerry. There began the start of our nightmare, the end of our world.

Janet (my partner) and I left as soon as we could for the four-hour trip home. Fortunately Janet drove while I slept for most of the way. Poor Janet drove her heart out until tiredness necessitated a rest.

Amongst all the latest technology, surrounded by the gentle hiss of a ventilator and various tones from alarming equipment, lay Kerry. Perfect, unmarked, asleep. Intravenous bags of this and that hung from the ceiling above her, various pumps pumped, while leads snaked across her body. Her top lip was swollen from where the ventilating tube rested against it with each hiss of the ventilator reinforcing how serious things were. The Intensivist explained the prognosis was extremely poor but there was a slight glimmer of hope. Hope was all we had.

A Wellington neurosurgeon reviewed Kerry’s scan and present state, deciding she was still too unwell for surgery. But at least she was still coughing as they suctioned her ventilator tube. The doctor who had treated Kerry in the Emergency department came to talk to our family. He was clearly grief stricken that her original bleed had not been detected or suspected.

Tonight was New Years Eve, the end of the century, the millennium with celebrations ranging far and wide. Kerry’s nurse was expecting a quiet night at home. We were exhausted. At midnight came the traditional celebrations, the fireworks while the partying clearly continued. Our house was almost silent. Janet and I saw the New Year in sitting in the lounge listening to the celebrations, whilst the rest of the family slept. After all they had been up since 2am the morning before, with only a brief nap.

Our world was on hold. In those moments, as the world partied I wondered how many other families were going through what we were then, how many babies were to be born at this moment and if anyone else in this big wide world realised just how desperately Kerry was clinging to life. What could we do to help her survive? Would she survive? And if so, how would the haemorrhage leave her. Helpless? She’d hate that or would she pull off a miracle and fully recover. She was surrounded by love, by hope and by courage. We willed her to recover.

New Years Day saw another family conference with another Intensivist. The probability of brain death was discussed. Kerry was beginning to deteriorate more often now. Each deterioration would be followed by a flurry of drugs with which she would again settle. Friends and family were beginning to arrive from all over New Zealand, phones rang constantly and the situation grew grimmer and grimmer. We begged, coaxed and joked with Kerry. She couldn’t respond other than slight movement in her left hand. Could she hear us, was she trying to reassure us with her little movements? We can only hope so.

The terrible realisation that Kerry was probably going to die was beginning to sink in. Our family discussed organ donation if Kerry was to become brain dead. We raised this with one of the Intensivist’s who reassured us they would do all they could for Kerry and that organ donation, if it came to that, would be a distant second to Kerry’s care.

Still she looked so perfect. Asleep for now, awaiting the miracle.

The next day Kerry was much sicker. She had continued to deteriorate to the point that she was now totally unresponsive other than occasional movement in her hand. By evening this had also stopped. Friends and relatives came and went. Tears flowed, and hope diminished. Leaving the hospital that night, we knew Kerry was to face the series of brain death tests in the morning. It was impossible to believe, our Kerry was going to die.

After all drugs had been withdrawn, Kerry was certified brain dead after two tests, performed by two different doctors at 8 and 10:30am. We were given the option of watching the tests, which we declined. This vibrant, much loved daughter, sister, friend and aunty was going through her final stages of her life. How could we participate in declaring her dead? We couldn’t.

Next began the process of selecting organs for donation. We again ended up in the "family room", with which we held the monopoly; to discuss exactly which organs Kerry was to donate. It was a very tough process. While we knew the importance to every recipient of every organ, it was heartbreaking to know that Kerry was going for surgery to have her very essence removed.

Kerry was certified brain dead at 11:02am.

We were instructed to say our goodbyes and then go, which we did.

What can you say?? I love you seems so inconsequential and inadequate. See you later?? We won't. Thanks for the memories??

How can you say goodbye to someone you love, who fought with you, laughed with you, cried with you. Who at times was a pain in the butt, yet loved us in spite of our faults, as much as we loved her?

At 31, Kerry’s life was over. No husband, no children, no little cottage with its white picket fence. Our Kerry was gone.

Kerry was in surgery for over three hours. Her heart, pancreas, liver and kidneys were removed for transplantation. Phil, one of her nurses, stayed with Kerry until the operation was completed even though his shift had finished prior to Kerry going to theatre. He had, to a degree, bonded with our family and even attended her funeral.

Ross, a close family friend and funeral director collected Kerry after her surgery, bringing her home to our house the following day. A large group of Kerry’s friends sang a Maori welcome as Kerry was brought home. She lay in her bedroom for the two days prior to her funeral. Friends and relatives came and went, crying, laughing and singing to her. It was a small comfort being able to talk to her and kiss her good night, knowing she was home safe with us. Sadly this obviously had to end and the hardest part was yet to come. As Kerry’s coffin was sealed, so were her dreams, hopes and future. Sealed with Kerry was all our love, respect and admiration for her battle to live and, in death, her gift of life to others.

While it was a large church, it was filled to overflowing with over 500 mourners. 21 of my workmates travelled to the Service. The local ambulance service attended with two ambulances and staff (a sign of support to me, as a paramedic). Friends and relatives from all over New Zealand and overseas attended. To this day, people still approach us to say what an amazing service it was. It was funny, tragic and sad, all at the same time. Emotionally draining but the love and compassion that was evident was almost overwhelming.

Kerry had the unique ability to relate to all people regardless of their social or economic status, a fact that was very evident in the diverse range of people and cultures who came to say goodbye. We cannot think of a more fitting way to say goodbye and she would have been proud of her service. It appears Kerry didn’t want the service recorded as three separate recording systems failed to record the service.

About a week after Kerry’s funeral, Janice, the organ transplant coordinator, contacted us to let us know how the recipients were progressing. The youngest was a teenager and received Kerry’s heart. Most recipients have written to thank our family for Kerry’s donation. The gratitude within those letters is from the heart and is very emotional. Reading the letters provokes mixed emotions: pride that Kerry has given the gift of life to others, with grief and sadness that she has gone.

Others often ask how we could have made the decision to donate Kerry’s organs. To be honest it did not require much thought. Here was a much loved daughter, sister, friend and aunty, who had so much more to offer the world and yet was about to die without doing so. Organ donation seemed a natural option. Unfortunately the issue of organ donation was never discussed with Kerry, but given her personality we are sure she would have agreed. She would be so proud of herself.

We so look forward to hearing about the progress of the recipients but sadly don’t often hear a lot. In a lot of ways, this is an area we, as I'm sure other donor families do, grasp onto following our loss. It is almost like their progress, is our progress also.

Lastly we would like to mention a special thanks to the following:

The Intensive Care staff who looked after Kerry: You treated Kerry and our family with respect and compassion. We could see the pain in your eyes also. Thanks also for your honesty and for letting us do the little things that meant so much to us.

The organ transplant coordinators, Janice and Ralph: Thank you for your understanding and compassion. Your support was greatly appreciated.

Ross and Andrew - An amazing service. Kerry was farewelled with style and dignity. Your ongoing support of our family is treasured.

Friends and Family - You were our strength. We will never forget your acts of kindness.

It is my intention to start a support structure for donor families and hopefully a website shortly that allows other donor families to tell their story. A plan for a memorial wall or garden is in its infancy.

If you would like to e-mail me, please do so:

Twenty-one adults and one child attended. In this meeting we watched the 12 minute video made by Reg Green called "The Nicholas Effect", which detailed their story of losing Nicholas while on holiday in Italy, and the response in Italy and around the world to their gift of his organs. They also make a strong statement in this video for organ donation. If you are interested in viewing this video yourself, Bethli Wainwright has a copy, contact details on page 1.

There was also discussion about the Thanksgiving Service, as we were given our invitations to attend this service at this meeting. Those who had attended services in the past, shared their experiences of it.

Sarah Beilby was a guest at this meeting, and spoke and answered questions about the research survey she is doing of Heart, Lung and Liver transplant recipients. Questions were raised about the privacy of the information and what feedback would be available to participants at the conclusion of the research. The answers satisfied the group.

It was announced that Janssen-Cilag (makers of Prograf / Tacrolimus) may be sponsoring a year's worth of sunscreen on a trial basis with liver transplant recipients for 1 year. This is a very practical form of assistance for us, as sunscreen is an expensive additional cost when on a sickness benefit. We appreciate very much their generous gesture. More information is available from the Liver Transplant Co-ordinators, who will be able to advise you of how to obtain it.

Notes taken by Bethli Wainwright.

The Liver Transplant Support Group met on the 18th of April. The meeting attracted fourteen recipients and their caregivers, and featured a talk from the dieticians Lynn and Kerry.

Lynn spoke about the problems of nutrition for patients with liver disease and the value of supplements and naso-gastric feeding to try and lessen the effects of malnutrition. Weight loss, tiredness, nausea and fluid retention are common and there is a need for extra calories to combat a failing liver.

Kerry spoke about the special problems of post transplant food hygiene; safe food handling and foods to avoid were all covered. She spoke of the need to limit calories to prevent overweight, after the ideal weight was reached.

A copy of the body composition printout and the nutrition graph can be made available to patients if they want them. (Contact the dieticians).

Notes taken by Susan Russell.

Owing to appalling weather there was only an informal chat session this day, as only about 5 people were in town for the meeting.

There was discussion about applying for jobs, with comments made about only mentioning what may actually apply to the job. For example, if you have RSI (OOS - Occupational Overuse Syndrome) this would affect a typing job. Liver discomfort may affect stooping and lifting. Clinic visits can be described as Doctors appointments, which is true.

This video was watched by the group. It involved transplant recipients relating their experiences and comments on the following areas: the waiting, the recovery, life after transplant, reaction/rejection, donors and the future. Discussion of the video followed, including the possibility of a New Zealand transplant video.

Notes taken by John Russell.

Additional Education Session for the Liver Transplant Group - July 18:

Ron Benjamin would like to inform everyone that there will be an additional Education Session on July 18, for the members of the Liver Transplant Group. He has arranged for Debby Mohr to speak to us. Debbby is an Auckland Peoples Centre Advocacy Services Co-ordinator.

Debby has asked that people think about the questions and issues that they would like clarification on, and if possible notify her in advance, via Ron. There may be a number of common questions relating to what can you receive in terms of assistance if on the Invalid's / Sickness Benefit and what Disabled benefits there might be.

Debby has access to all the relevant WINZ manuals, and can provide us with the best information if she has an idea of our concerns and questions in advance.

A Winter's Tale - the hot water bottle experience…..

It was a chilly Friday night, and the decision was made to make a hottie, and microwave a wheat bag, in order to remove the chill from the bed before retiring for the night. Upon going to bed, the hottie and wheat bag were not removed, rather this liver transplant recipient curled up around the hot water bottle and went soundly to sleep.

Imagine the consternation in the morning, when having a shower, she noticed raw flesh on the scar. What was happening! Was the liver pushing through the skin? Uh oh, what were those dark burgundy ribbed lines, not….the hot water bottle? Yes, you guessed it. With no nerves in a three inch band across the stomach, she had managed to burn the skin off two patches of skin close to a scar line. There were two severe burns, however there was no pain at all.

Not thinking much of it, after all these would scab in time, she continued on her merry way until the following Wednesday, five days later, when at her next Liver Clinic appointment, she mentioned it to Dr. Gane. Whoops!! Apparently Staphylococcus is a bug that loves burns, so a prescription of Flucloxicillin antibiotic was required.

If you are an avid hot water bottle user, please remember the following:

• always have them covered, even if only wrapped in an old towel
• don't put them anywhere you can't feel!! (Consider an electric blanket instead)

If you do burn yourself, taking the skin off, exposing tissue - the New Zealand Liver Transplant Unit will want to know, so that they can stop you getting an infection.

After being accepted early December 2001 for the Liver Transplant Programme, I found the hardest time for my caregiver and me was waiting, then finding out that when you thought you were first on the list, suddenly you were number three. However, we accepted in the beginning that this could happen. I now remember Dawn's words - "It'll happen when you least expect it!" How true those words were to be!

The day after being told I was 3^rd on the list in my blood group, I received that much awaited phone call.

Keeping a positive physical and mental attitude is most important pre- and post-transplant. I found the positive attitude of the people from the Transplant team, the nurses, the caregivers and friends rubbed off on me, and helped my quick recovery. The whole procedure from operation to where I'm at now, i.e. nearly one month down the line (from the transplant), has run smoother than either my caregiver or myself ever dreamed of. We had both decided, early on, there would be no "cotton wool wrapping" and to get back to normal life as soon as possible was my main goal.

After the operation I came to in the Department of Critical Care Medicine [D.C.C.M.] with what seemed like a maze of tubes protruding from my body, and this tube (the ventilator) down my throat. I had heard about this procedure from other patients. Some had said they found this most uncomfortable. My thoughts were - "it's just for a day or so, relax and don't fight it, and try to breathe at a comfortable pace in harmony with the ventilator." It does help, and the tube was taken out that morning.

After a day and a half in D.C.C.M. I was taken up to Ward 7B, where I celebrated my 58^th birthday with family and friends - wow, what a birthday! Over the next few days tubes were removed, my strength and energy increased and I was able to get up and about. This was a good confidence booster. The next buzz was seeing all those ugly liver spots (spiders) and skin growths magically vanishing and a decent colour returning to my skin. To get out and see people you haven't seen for weeks and they comment on how well you look is wonderful encouragement.

Eight days post-transplant I was discharged from hospital. The day after returning home I had this urge to play a game or two of Pool (Eight Ball) with my partner and caregiver - Karen. I had heard and read of some of the side effects of medication, such as vision and tremor effects, so this outing was to prove to myself that even with 40 metal clips in my abdomen, I could still play a reasonable game. The result was positive, so I contacted a buddy of mine - Steve - and arranged with him to play as partners in the "Mens Doubles" Trophy Competition at our local pool club. This was to be played up to and including the semi-finals on Tuesday evening, 11 days post-transplant, with the Finals on the following Tuesday.

When I told Dr. Gane of my plans the day before we were due to play, he gave me this strange look and asked me if I felt well and able enough. My reply was that I wouldn't attempt it if I thought I wasn't able, so he gave me the nod. Once again, I found myself in the position of having nothing to lose and everything to gain. Our game plan was to relax and let each other play our own natural game. Happily, we won our way to the Finals. This was to be decided the best of 5 games and so the icing on the cake was our winning the Finals 3-0 in just 25 minutes. A positive, relaxed attitude works wonders and our game really clicked that night.

Thank goodness there is no steroid testing in pool competitions, if there was, maybe I'd be banned for life. My next goal is to get back surfing next summer, that's the ultimate fun.

My last and most important thought is for my Donor, who has given me the chance again of the greatest thing in life - good health. To that person and family I shall remain forever grateful.

Roger

Auckland Thanksgiving Service - thoughts from a choir member:

The Service of Thanksgiving was held at the Auckland Cathedral of The Holy Trinity on Sunday, 29th April. The welcome was by The Rt. Revd Richard Randerson, Dean, and then we were lead by the Cathedral Choir in the Hymn "Morning Has Broken". The Revd Dr Warren Limbrick, Associate Dean then prayed. There was a really good turnout of people at the service. Jill, Mother of a Donor, spoke of her son, her loss, and her decision to donate his organs, which was very moving.

The service underlined a previous decision of mine to have donor on my drivers license (as with my husband) - just to ensure the rest of my family don't go against my wishes should the need arise. I have a lasting memory of the number of recipients, and how well they looked, along with, as we processed out, how many candles there were, and that how by that time they were merely wicks in a sea of melted wax still burning brightly.

Kathy

The European Liver Transplant Registry is a service of the European Liver Transplant Association, which is part of the European Society of Organ Transplantation. This is a fascinating site which has a map of Europe showing the number of transplants that have been done in each country between 1968 and 2000. There is a very interesting "results" tab, which includes statistical and graphical information about survival rates by disease, by year of transplantation and by age. There is data going back to 1968, and it is clear to see how the initial survival rates are increasing each year, presumably owing to better drugs, and increased technology.

As creator of the site, Bethli Wainwright, herself a Liver Transplant recipient, says "I wanted to provide the kind of information I was looking for when I was waiting for a transplant. I also wanted an opportunity to make my donor family proud of the decision they had made in giving me the gift of life."

The website offers a mix of personal experience and practical help. Special features include personal stories from recipients about their challenges and successes. Jean Rombach says, "as a kidney recipient of nearly 7 years I am forever grateful for my amazing gift of life. I am so thrilled to be able to support this new website and I know people are wanting to understand and learn more about organ donation and exactly what is involved in being a potential donor."

As one of two Transplant Donor Co-ordinators in New Zealand, Janice Langlands says "it's great to see recipients telling the community how well they are after their transplants and how grateful they are to the donor family." It is hoped that the website will also encourage others to become organ donors.

The site has a dual purpose of showcasing the gratitude for a second chance at life through the awesome gift of a donor organ, from all our donor families. This appreciation is life long, and our donor families are constantly in our thoughts.

The New Zealand Liver Transplant Recipients website is a growing body of experience. Already there are Fact Sheets on topics including Drugs and other post-Transplant features, as well as a collection of stories of our experiences, and those of our Caregivers. Information about the Support Groups and the Thanksgiving Services in Auckland and Christchurch this year is also there.

The launch of this website has been timed to coincide with the Auckland Thanksgiving Service on the 29th April at the Auckland Cathedral. There is no Donor Awareness week this year, so this is an attempt to consolidate awareness of the importance of discussing your personal stance on organ donation.

Should you wish to be a donor, it is not enough to have "Donor" on your Driver's Licence. Your family will be asked for their decision, and if they do not know how you felt about this, the decision you would prefer may not be the one made. It is important that every family takes 5 minutes once, to discuss this important issue. You never know when you may be in the Donor or Recipient category.