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 Jeanette Churchwood, friend of a liver recipient.

It was with great delight that I attended the official presentation from the Renai Brown Family Trust of a donation of $60,000 on the 22^nd June 2001. A trust fund is being established to benefit liver transplant recipients and caregivers. The income from the Trust will be used as needs arise. Additional donations to the trust are welcomed. I am hoping that there will be the facility for automatic fortnightly or monthly payments to enable those of us who would like to contribute to do so, without having to save a lump sum. More information is available from the New Zealand Liver Transplant Unit.

Auckland Hospital's internal newsletter "Heartbeat" has an article in the August / September 2001 issue (no. 49) about the donation of $60,000 from the Renai Brown Family Trust to the New Zealand Liver Transplant Unit.

In June, on behalf of the Renai Brown Family Trust, Tony and Glenice Herbert presented a donation of $60,000 to the NZ Transplant Unit at Auckland Hospital. The Transplant Unit will use the donation to set up a trust fund, so that the interest from the fund can be given to patients and their families to assist with living expenses while they are undergoing treatment.

Professor Stephen Munn, and Transplant Unit Social Worker, Ron Benjamin, expressed their gratitude to the Renai Brown Family Trust for their generous donation. "Many families face enormous financial pressures during this time, especially when they have to come to Auckland from afar", said Ron Benjamin. "Financial stress can have an enduring impact on families and if we can go some way towards alleviating that, it helps to build a strong family support network, which is crucial to the process of recovery after major surgery."

Liver Transplant Caregivers Group:

The third support meeting of the Liver Transplant Caregivers Group was held on the evening of June 12^th, and four caregivers braved the chilly evening to meet with Ron Benjamin at the NZLTU at Auckland Hospital. An interesting time was had, with a lot of discussion about the many different experiences and problems that caregivers and their transplantees face, and the only disappointing part about the meeting was that so few were there to share in it. We would like to encourage more caregivers to come along and share the problems (and joys) of life with their recipients pre- and post-transplant.

Notes taken by Robin Wainwright.

Anniversaries:

Celebrating liver transplant anniversaries in July and August are:

1. Margarette C, July. 1 year.
2. Greg H, July. 1 year.
3. Wayne E, July. 4 years.
4. Murray W, August. 1 year.
5. Steven Z, August. 2 years.
6. John Mc, August. 1 year.
7. John R, August. 2 years.
8. Bethli W, August. 1 year.

On Wednesday John McCall presented the Liver Support Group with a fascinating Powerpoint display of an actual liver transplant performed by Prof. Stephen Munn. It was amazing to see each cut and the tying off of veins etc as the damaged liver was removed. I must say it appeared to be a very clean process but we were forwarned that parts had been edited so I guess that was cut out. Before the new liver is put in place a solution is flushed through the liver to flush out any preservative to prevent it doing any damage to other organs in the body. Prof. Munn handled it as if he was about to slice it up for Lambs Fry and Bacon!!! Amazing how tough it must be!!!

We then watched as it was put in the large empty space - the texture looking so very different - not at all knobbly and pitted like the previous one. As the final stitch to connect all the veins etc was made, the blood began to flow through the veins and the whole liver took on a healthy pink glow. The old Gallbladder was then removed, and the new Gallbladder was also removed from the new liver. John McCall made comment that this is the only time a person has 2 Gallbladders removed!!! Then we watched as the muscle and tissues etc were stitched back together and the final staples put in place. Our questions were answered after this presentation.

Notes taken by Wendy Duff.

Thirteen people attended including Val and Dawn, the two liver transplant co-ordinators. Ron was absent owing to illness. Discussion concentrated on further questions from the previous meeting where Mr. John McCall had demonstrated aspects of liver transplant surgery and answered questions. All the feedback from this session was very positive, and a repeat session is desired. Further discussion centred on the questions we wish to raise at the next meeting, when Debby Mohr, an Auckland Peoples Centre Advocacy Services Co-ordinator, is going to speak to the group and answer questions.

Notes taken by Bethli Wainwright.

This education session of the Liver Transplant Group was attended by twelve recipients and their support people and was addressed by Debbie Mohr, the Advocacy Services Co-ordinator at the Auckland People's Centre. Prior to this session there had been a number of questions submitted for Debbie to answer and they focussed very much on eligibility criteria and entitlements under the Sickness Benefit, Invalid's Benefit and Disability Allowances. Debbie was able to answer these questions and provided some excellent handouts on the Sickness and Invalid's Benefit and also Disability Allowances and Reviewing a Decision at the Department of Work and Income. I have copies of these handouts, which I can mail to you at your request (Phone (09) 307-4949 ext. 7513).

The Auckland People's Centre offers free help with benefits, budgets and accommodation and apart from answering any questions you might have over the phone also provide an advocacy service for particularly complex cases. In these situations they would recommend that you make an appointment at the Centre for a personal interview. They have three centres in Auckland at the following addresses:

33 Wyndham Street, Auckland City Ph. 302-2496

7 Halver Street, Manurewa Ph. 267-6331

366 Massey Road, Mangere East Ph. 275-6111

Notes taken by Ron Benjamin.

This meeting was attended by twelve people, and facilitated by Ron with Dawn's assistance. It was a delight to see Noelle's sister and hear about Noelle's second transplant. After an initial discussion about the website for liver transplant recipients (www.livers.org.nz) and Ron's call for assistance and contributions for this site, the discussion focussed on the recently announced decision to proceed with live liver transplants in New Zealand. The Checkpoint Interview between Rae Lamb and Bethli Wainwright was played (transcript later in this issue). Ron mentioned that there was permission to do 5 only, and these were for people in the acute category (with less than 12 weeks to live) or cancerous tumours. Interested Donors could be family members or friends of a potential recipient. There would be three stages of testing before acceptance as a Donor, which would include assessment by a Psychiatrist and an Anaethetist. If you would like to talk about this process further, please contact Val, Dawn or Ron at the New Zealand Liver Transplant Unit.

Notes taken by Bethli Wainwright.

Smiling is infectious, You catch it like the flu
When someone smiled at me today, I started smiling too
I passed around the corner, And someone saw my grin
When he smiled I realised, I'd passed it on to him
I thought about that smile, Then I realised its worth
A single smile, just like mine, Could travel around the earth
So if you feel a smile begin, Don't leave it undetected
Let's start an epidemic quick, and get the world infected.

Noelle's Second Chance:

Many of us know Noelle, from Christchurch, and admire her tenacity, courageous spirit, and positive attitude in a very stressful and debilitating situation. She is very happy to let everyone know that early in July she got her second liver transplant. She is still in the Department of Critical Care Medicine at Auckland Hospital, and is starting to look better. She sends her regards to all.

Ron Benjamin's Speech
On the 22^nd June 2001, on the occasion of the presentation of a cheque for $60,000 to the NZLTU for a new Trust Fund, from the Renai Brown Family Trust.

I am very pleased to have been given the opportunity to speak on this occasion and looking around at the number of people here today it is very fitting that a gift of this magnitude and of such a generous nature from the Renai Brown Family Trust should be acknowledged in this way.

When I came into the Liver Transplant Unit in December 1998 the unit had been operational for about 10 months. I remember talking to Rose, the social worker who was leaving the unit at the time, not only to pick her brains about social work in the transplantation field but also to see if there were any particular social work needs she had identified over those previous 10 months. She was very quick to point out how valuable it would be to have access to a fund which we could use for those patients who were facing financial stress as a result of the transplantation process. The need for such a fund has not lessened and well may have increased over the past two years.

So I was delighted when Steve informed me that the Renai Brown Family Trust was making a donation of $60,000 to be used for social support. For those of you who do not know about Renai, she was a 13 year old teenager in 1995 when she had to go to Brisbane with her family to have a transplant. Money had to be raised to provide Renai and her family with the extra support they needed for this. It is a tribute to the endeavours of all of those people involved that they raised so much more money than was required. Through their efforts they were more than able to provide her with additional support and to meet her needs at the time.

It is also a credit to them the way they have looked after this money and invested it so wisely which has accumulated to the $60,000 they are donating to this unit today. What we hope to achieve with the interest from this sum is to provide additional support for those patients, their families, and support people who do not have access, for various reasons, to normal avenues of funding.

When I think about the families who might have benefited from this money a number of cases come to mind. Early this year we transplanted a man who came from the lower part of the South Island. He was married with a 4-year-old daughter, had not worked for some time because of ill health, and had taken on the major role of looking after their daughter while his wife worked. Financially they were just getting by. He was faced with having to come to Auckland to live for several months while awaiting a transplant and when he had his transplant he was joined by his wife and daughter who stayed in Auckland with him as he recovered before returning home.

This whole experience, which lasted about 6 months, placed the family under enormous financial pressure from which they have still not recovered. When he came to Auckland his wife had to pay for day-care and additional pre-school sessions for their daughter while she continued to work. Also post transplant having to come to Auckland and support themselves while having to maintain a house in the South Island just about tipped them over the edge financially.

Other examples include families who also are faced with having to come to Auckland from other parts of NZ. While the Unit provides accommodation and transport for the patient and one support person, sometimes the cost of travelling long distances are just too prohibitive for other family members to spend time with the patient while he or she is in Auckland. I envisage this fund will be able to assist there.

There are also those patients who for various reasons do not qualify for benefits because they are earning that fraction too much or for some reason just fall between the cracks.

Finally there is the example of a patient whom I had contact with recently at an Outpatient's Clinic in Middlemore. I had not seen him for some time, but he had regularly attended the first few sessions of a support group which I currently facilitate here in the hospital. When I remarked to him that I hadn't seen him for a while at the group he said that he had initially been able to get a lift into two of the meetings and had subsequently used a bus on two occasions. He had, however, found it difficult to meet the cost of the bus there which amounted to around $8 return. He was a very proud person and it was not easy for him to tell me this.

So these are just a few of the examples of how patients and their families might benefit from this trust.

I do find it difficult to convey to you what this means as a social worker to be able to have access to a trust fund such as this for our patients and their families. One of my main roles in the Liver Transplant Unit is to do what I can to assist patients to cope with their anxieties around transplantation and to alleviate stress in their lives. We know that one of the major stressors faced by many families who have a member who has been chronically ill with liver disease is financial. Particularly those who have become benefit dependent and have to live in Auckland separated from their homes, support networks and comfort zones in general. For these families, an extra $30 a week, some assistance to help a special family member or friend to come to Auckland, or payment of some childcare to give a parent a break, may be enough to not only alleviate pressure but also prevent a family from "crashing".

Financial stresses have enduring impacts on families and the importance of a strong family support system is essential to the process of recovery.

We are also hopeful that this fund for additional social support for patients will actually grow and develop even further. Already we have a possibility of another donation. We believe that this has arisen because of the availability of this existing fund. It is something people can identify with and add to and we hope naturally that this will continue.

Finally I'd just like to take the opportunity to acknowledge the support that A+ Management has given the Liver Transplant Unit and the trust that they have shown in us to allow us to be able to accept funds such as this which will go a long way to benefiting our patients and our patient's families. So on behalf of these patients and on behalf of the Liver Transplant Unit in general I'd like to thank the Renai Brown Family Trust for this very generous gift.

Val's Column...

There have been some staff changes in the New Zealand Liver Transplant Unit. We want you to have an idea of 'who's who' for when you are visiting the Ward or Clinic. Introducing …

Tania Dunn is the Clinical Nurse Specialist for Liver and Renal. Tania replaces Margaret Johnston who has left and is now the Renal Transplant Co-ordinator. Tania is on the ward every day and is there from 0700 through to 1700. She previously worked in ICU at Auckland.

David Orr is the Medical Registrar who has replaced Dinesh Lal. Dinesh is now working at North Shore Hospital. David is with us until December.

Reza Navidinejad is the Clinical Support Specialist on the Ward. Just now he is in training but from September onwards he will be on the Ward and assisting the Registrar with Admissions, Discharges,etc.

Also if there is anybody that still has a Pager or Glucometer, which they are no longer using, then we would love to receive them.

Ninety-two transplants have been carried out since February 1998.

Transcript of an interview by Rae Lamb with Bethli Wainwright, on Checkpoint, National Radio, on Wednesday 25^th July, 2001, re live liver transplants.

Bethli: I think it gives some people potentially a little bit more hope, because there is such a shortage of organ donors in New Zealand, and there is also not very much awareness of organ donor issues, so the fact that a member of your family could volunteer to be tested to become a live organ donor, I think would give many people that ray of hope, as well as I think add a lot of family stress to a really, really tiring situation.

Thanksgiving Service in Christchurch, Sunday June 10^th at 12 noon.
Report from Karen Wakelin.

The Thanksgiving Service held at the Christchurch Cathedral had approximately 200 people attend. After the Welcome and Gathering Prayer the lighting of the Candles by the transplant recipients occurred and a Pray of Thanks for the precious gift that had come form the donor and their families was offered. They had three people give a reflection on how they came to be attending the Thanksgiving Service. The first was from the mum of a young boy who had an allergic reaction to a bee sting and was on life support and the process of grief and then to giving of the organs for transplant. It was very moving. The second was from a heart transplant recipient and his story was wonderful as well. Went much along the same lines as the out of town liver transplants with the waiting for the phone call to go to Auckland and the waiting in Auckland then the joy and new found energy that comes with the transplant. He looked wonderfully well and healthy. The third was from a Kidney transplant Lady who had a long history of waiting from a young age and then the successful transplant. She read out the thank you letter and that was amazing. She had only just found out that you could write and thank the donor family and how to go about it. There was about a ten year gap between the transplant and the thank you letter so there was a lot to tell the donor family. She had married and they were the proud parents of a little girl and just how thankful she was to the donor family.

Owing to the Editor's full-time return to professional work from mid-August, there is a need for assistance with the compilation of the Newsletter, and volunteers to take notes at the Support Group meetings. A template can be provided for note-taking. For Newsletter assistance, anyone who would like to address envelopes, collect useful material or similar, please contact the Editor. Contact details on page 1. For anyone interested, the return to work is as Knowledge Management Advisor to Simpson Grierson (law firm).