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

(Business(es) associated with transplantation in some way, e.g medications or technology?)

Liver transplant surgery can be challenging, not only for transplant patients but also for people close to them. Often the needs of caregivers and support people are different from those of liver transplant patients.

The Liver Transplant Caregivers Group: -

• is for caregivers and support people of liver transplant patients
• offers a supportive environment to share views, gain further information or simply just listen
• provides the opportunity for you to discuss various issues, learn from each other, and most importantly, share your strengths and experiences.

WHEN: 2001 - Tuesdays

February 13
April 10
June 12
August 14
October 16
December 11

TIME: 7.00 - 8.30 p.m.

FACILITATOR: Ron Benjamin, Liver Transplant Social Worker

Celebrating liver transplant anniversaries in January and February are:

1. Robert L, January. 2 years.
2. Grant, January. 1 year.
3. Paul, January. 1 year.
4. Robert I, January. 1 year.
5. Ronette, February. 3 years.

Congratulations everyone!

I am John's caregiver, a heart-rending, thankless yet rewarding task. Like many caregivers I found that the job was mine because my nearest and dearest was desperately ill. A caregivers job, in my experience, covers a wide range of tasks. Primarily I dealt with the Hospital, a big scary place full of high powered professionals. I struggled to absorb medical terms and treatments as John went through the tests required to assess him for transplant.

If I could show myself to be practical, level headed and reliable "The Team's" job would be a little easier. I found myself playing this role and hiding my fright and distress.

On the home-front caregivers find themselves trying to hold the family together as well. I had to tackle jobs that I really had no experience of. Luckily no fuses blew and the lawn mower always started first pull. Family and friends, of course, were frantic with worry and I found myself constantly answering the phone, providing updates and reassurance. To lessen the load I set up a network of people to inform, who in turn passed information on.

When John was sent home from hospital to wait for a liver I had to deal with drugs and dressings, night feeds and nutrition. I got to know the District Nurses and the Cancer Nurse well. These ladies were a bright spot in our existence. During this time I realised that I was becoming more isolated and I felt very alone behind my bright, brave facade.

The transplant was successful and John has been well for 18 months and I find myself faced with the problem of trying to let go. Now my constant care is not needed, I must stand back and let him live. If I monitor him I must do it discreetly and try not to panic if he gets tired and sore. I live with the knowledge that we are together on borrowed time. My task now is to try and make our lives as full and happy as possible.

I have met other caregivers and I see in their faces what I see in my own. I see the tension around the eyes and the body language which indicates the stress they live with. Many people have introduced themselves as "only the caregiver" and have become retiring faceless people. Many like myself have put their needs last.

You do a job that other people can only guess at. Your continued good work is so important. It needs to be acknowledged and appreciated.

This meeting was facilitated by Ron Benjamin, NZLTU Social Worker, with the assistance of Dawn Kelly, NZLTU Liver Transplant Co-ordinator. It was attended by 13 recipients / caregivers / waiting list people.

The main topic discussed was writing to donor families. Some recipients wrote straight away, others waited 8 months or more. This could be for reasons including the need to see that the transplant had been successful, and also because of the difficulty in writing to say thank you.

Thank you was seen as an empty statement. These words, which are used in many contexts, were not seen as adequate at conveying the enormity of the gratitude that many recipients feel. It is also hard to say thank you to a family that has lost someone; many recipients feel it is better to say how grateful we are.

Even though we may not feel happy with our initial letters to our donor families, we can always write to them again, and suggestions for follow-up include:

• Sending a card on the anniversary of their loss / our liver transplant date
• Sending a Christmas card to this special family

The question was asked: What do you say if post-transplant you aren't doing so well? The feeling was to not say anything. Don't hurt the family. Stress the positive. The donation of their loved one's liver is still a precious gift, and the gratitude is not lessened, if we experience post-transplant problems.

Ron mentioned that overseas research shows that up to 90% of donor families appreciate hearing from transplant recipients. A donor family present commented that they had not heard from their recipients, and they would have liked to have.

One recipient family had already heard back from their donor family, although the response was many months after they sent their letter.

Overall it was felt that writing this letter is very important, and although no one appears to ever feel satisfied with what they wrote, many believed that the longer it was left, the harder it got to write. It is always on your mind.

Notes taken by Bethli Wainwright.

This meeting was attended by 8 people. As there was a general discussion on food handling techniques, the principal speaker has been kind enough to write two articles covering the tips mentioned. See pages 4 & 5.

This meeting was attended by 18 people and facilitated by Ron Benjamin. There was a range of attendees: transplant recipients, caregivers, and those on the waiting list.

The discussion concentrated on what the waiting period was like for different people, from two perspectives: the transplant patient perspective and the caregiver perspective. Those people currently waiting were encouraged to ask questions of recipients and caregivers, who have already been through this experience.

There was a final discussion about practical things people could do while waiting for the transplant, as well as tips to think about. These ranged from trying to keep as normal a life going as possible, to the benefits of cell phones when in hospital. There was also some discussion about what it was like in Intensive Care, and the use of a pre-printed "Question Board" to point at, while unable to speak - this is something that can be designed before hand and kept in the "Waiting" bag.

A question had been sent in by a male transplant recipient.

This was discussed amongst those male transplant recipients present. They did not share this characteristic, but felt that without knowing the drugs, there was no fair comparison, as this person may have been on stronger or different medication, and all those present were on Tacrolimus. One comment was that Viagra's potency is increased by 50% by Tacrolimus, if Viagra was one of the drugs this person was prescribed.

Notes taken by Bethli Wainwright.

Food Handling Safety:

These tips are from Susan Russell, an experienced Rest Home cook, and Caregiver to a transplant recipient. These hints are based on MAF Food Hygiene regulations and suggestions.

Micro organisms need moisture, warmth and food to grow and reproduce.

1. Handwashing is your most important defence against bacteria and viruses. Hands need to be well soaped on the palms, sides, fingers and backs. Remember to clean fingernails and remove jewellery. Clean hands need to be thoroughly dried with a paper towel or clean hand towel.
   
   
2. All frozen food should be defrosted in the fridge. This can take between 24 to 48 hours so plan ahead. Ideal temperature for fridge is 4°C. Thermometers to test temperature are available from Dick Smith. "Diagnostic" use Slimline thermometer - Y5007 cost $32.95.
   
   
3. Food in the fridge should always be wrapped or covered, with raw food separated from cooked food. Raw meat needs to be stored low to avoid drips on other food.
   
   
4. Poultry - To minimise the risk of Salmonella poisoning cook unstuffed. The bird must be thoroughly defrosted, remove giblets, wash under cold tap and blot dry with paper towels inside and out. A butter and herb mixture can be placed under the skin for flavour and moisture. Cook until the meat slides easily from the bones. You can still enjoy the stuffing by cooking in a loaf tin. Top with a bit of chicken fat or butter and cover with foil to keep it moist. Takes 15 to 20 minutes.
   
   
5. Be especially wary of B.B.Q's. Undercooked chicken, pork or sausages that are black on the outside and pink inside should be avoided. I've seen cooked meat put onto a plate that minutes before held uncooked meat. The best bet is to take your own meat and cook it yourself.
   
   
6. Your health is in your hands. Please don't ever eat something you know could poison you just to avoid hurting someone else's feelings. After all, it's you that could end up back in hospital.

Eating Out Safely:

Further tips from Susan Russell, an experienced Rest Home cook, and Caregiver to a transplant recipient.

• Avoid coleslaw, potato salad, rice salad and pasta salad. They contain a combination of raw food with mayonnaise.

• Avoid filled rolls containing cooked meat or seafood with salad vegetables.
• Avoid pies and pastries in pie warmers
• Avoid custard pies or slices
• Avoid cream filled buns, cakes or pastries

• Avoid the seafood, cold meats and salads
• Choose from the hot roast vegetables and roast beef or lamb
• Avoid deserts that are covered with cream - pavlova, chocolate log, brandy snaps etc. Do you really need those calories anyway?

• Home prepared lunch - keep safely in a chilly bin until eaten
• Muffin Break muffins - these are fresh each day and handled with tongs
• Bread shops produce fresh and tasty rolls and buns daily.
• Bananas: nutritious, delicious and sold in a sterile, easy opening package.

• Choose hot dishes and cooked vegetables. Ask that decorative salad vegetables be excluded from your plate.

Video on Organ Donation for Public Education:

During Organ Awareness Week last year, Reg and Maggie Green and their family visited New Zealand to help raise public awareness about organ donation. You

may recall their visit and the tragic story of the death of their son Nicholas following a shooting while they were touring in Italy. Their agreement to organ donation following Nicholas’ death and the publicity surrounding his death dramatically improved the donor rate in Italy.

Reg and Maggie enjoyed their visit to New Zealand and on their return to America decided that they would like to fund the production of a video for public education in New Zealand. In December two producers from America came to New Zealand and, along with a New Zealand film crew, they interviewed donor families, recipients and health professionals involved in organ donation and transplantation in New Zealand.

We are extremely grateful to the Reg Green Foundation for funding the production of this video for New Zealand. At this stage we would expect the video to be available to us by May of this year. The video will be about 15 minutes in length and will be used for helping to raise public awareness.

For further information, please contact:

The National Transplant Donor Co-ordination Office
P O Box 99 431
Newmarket
Auckland

Often many hours of organisation will have taken place before you receive your call to say that a liver is available for you. So how does it all happen?

A donor co-ordinator is available 24 hours a day to receive referrals of potential organ donors from intensive care units throughout New Zealand. At the time of the referral the donor co-ordinator obtains relevant information about the donor. Once all the information has been received, the donor co-ordinator contacts the transplant teams. This includes the Heart and Lung Team at Green Lane Hospital, the New Zealand Liver Unit, the Director of the New Zealand Kidney Allocation System, the National Eye Bank and the Heart Valve Laboratory at Green Lane Hospital, if the heart is not being retrieved for transplantation.

The transplant teams decide whether the organ(s) are suitable for transplantation and whether they have recipients for those organs. If there are no suitable recipients in New Zealand (ie the recipients on the waiting list might not be a compatible blood group with the blood group of the donor), referrals are made to the Transplant Units in Australia.

The donor co-ordinator ensures that the appropriate blood testing has been carried out on the donor, organises the organ retrieval operation, organises all the transport for the New Zealand transplant teams to travel to and from the donor hospital and travels with the transplant team(s) to the donor hospital.

Following the organ retrieval the donor co-ordinator provides feedback to the staff involved in caring for donor and the family and those involved in the organ retrieval operation. For the staff involved, hearing about the positive outcome(s) of the organ donation makes it seem all worth-while.

One of the most important roles of the donor co-ordinator is providing support and feedback for the donor family. Families receive a letter of thanks at one week, which includes general information about the recipients, eg the liver was transplanted to a man in his fifties. The donor co-ordinators then contact all donor families by phone at three months to offer further information and support. Some families maintain contact with the donor co-ordinators for many years after that to find out the wellbeing of the recipients while for others no further contact is made.

Transplant Donor Co-ordination Office
P O Box 99 431
Newmarket
Auckland

Thanksgiving Services - advance notice:

There are special church services for donors and recipients of transplant organs in Auckland and Christchurch each year. This year the Thanksgiving Services will be held on the following dates:

Auckland: Sunday April 29^th

Christchurch: Sunday June 10^th

"I have tried several times to write to the Donor family to thank them. I have the pamphlet "Writing to the families of Organ Tissue Donors". Every time I write I get so far then read it and start thinking maybe that's not what, they the family would like to hear. I'm coming up to the one year anniversary and know I should have done something earlier. Can any of the readers give me some ideas or have they found it hard as well."

This question was discussed in the Liver Transplant Group on Wednesday 6^th December 2000, and the report from this meeting is on pages 2 and 3 of this issue.

"The Need For Organs
At any one time there are about 400 New Zealanders waiting for the right organs to become available and many more wait for the transplantation of corneas, heart valves, bone or skin. Some of these people will die while waiting for a heart, lung or liver. Others will remain very sick and in the case of kidney failure can be on dialysis for three or four days a week. Organ and tissue transplantation is now standard practice in New Zealand medicine.
Organ donors offer the gift of life."

This quote comes from the opening page of the National Transplant Donor Co-ordination Office's website. This site is certainly one to recommend to friends and colleagues, and may be worth advertising in your e-mail footers. The information on this site includes:

• Why donate?
• Who can donate?
• How to donate
• What happens - which includes a little on the recipient, see below.

Other information on this site includes:

• Common Questions
• Facts & Figures
• Useful Links
• Background and
• Contacts

Cookery Corner:

Here is a recipe for a Rice Salad from Susan, a Caregiver.

"I make this salad when we are asked to take a plate to a B.B.Q. or party."

1 440g tin of pineapple pieces in natural juice
1 425g tin of whole kernel corn
1 cup of long grain rice
2 large tomatoes
salt and pepper

1. Wash the rice;
2. Cook rice in salted water until just cooked;
3. Drain;
4. Pour fresh boiling water over the rice then spread on a shallow dish and allow to dry and cool - about 10 minutes;
5. Drain pineapple pieces and corn and mix in a bowl - retain ¼ cup of pineapple juice;
6. Blanch tomatoes in boiling water until skins peel off - chop, then add to pineapple and corn;
7. Mix cooled rice and salad together. Pour over pineapple juice;
8. Season to taste;
9. Cover and refrigerate - Eat as soon as possible.

Enjoy!!

Division of Transplantation, Department of Surgery, University of Miami School of Medicine, 1801 NW Ninth Ave, Highland Professional Building, Suite 511, Miami, FL 33136, USA.

"HYPOTHESIS: Histological grade of hepatocellular carcinoma (HCC) is an important prognostic factor affecting patient survival after orthotopic liver transplantation (OLT).

PubMed is the U.S.'s National Library of Medicine's search service

Liver Transplant Web Page:

Remember that we are trying to develop a website with as much helpful and informative content as possible! We aim to launch this publicly prior to the Auckland Thanksgiving Service in April 2001. At this stage we have:

• 1 Caregiver story - Susan's story
• 1 Transplant recipient story - Wayne's story
• 1 "Letter to a Donor Family" - Anonymous

If you feel like writing for this website, post or e-mail any contributions to the Editor, "Hepatic Happenings". (For contact details, see page 1 of this issue).

Helpful Hints:

John Russell has had some special window film installed in his home. If you have a conservatory which blocks out some UV rays, but not all, you also may wish to consider looking at installing special film to reduce the UV still further. Llumar Window Films block out 99% of the UV rays. In Auckland this can be installed by:

nUView Solar & Security Films
PO Box 44078
Pt. Chevalier
AUCKLAND

For those outside Auckland, perhaps you could ask your local glass merchant?

• Dr. Dinesh Lal is the new Liver Registrar.

• Lisa Craig has been acting as the Clinical Nurse Specialist over the summer. Lisa has been offering support and guidance to staff and patients.

• Margaret has moved from her role of Clinical Nurse Specialist to that of Renal Transplant Co-ordinator.

• Toni has been enjoying her stay in London, and catching up with other nurses who are over there.

10.01.2001 By KATHERINE HOBY