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Volume 2, Number 1
Happy New Year everyone! How many of those New Year's resolutions are
still intact? I hope you have had a happy Christmas with your families and a very
relaxing New Year! The weather seems to have been friendly to most regions of
the country on the whole, although the top of the South Island had those terrible
fires. Isn't it strange, how even in the driest weather the weeds still grow strongly,
although the grass yellows, and the plants need watering. I hope your year has
started on a healthy and positive note, and that it will get better as the year
develops. All the best for a great 2001!
Liver Transplant Caregivers Group:
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
♦ provides the opportunity for you to discuss various issues, learn from each
other, and most importantly, share your strengths and experiences.
2001 - Tuesdays
This issue has been
WHERE: NZ Liver Transplant Unit
Thank you for your
7.00 - 8.30 p.m.
Ron Benjamin, Liver Transplant Social Worker
issue. Any SAE are
Celebrating liver transplant anniversaries in January and February are:
Next issue is due
Susan's story -
I am John's caregiver, a heart-rending, thankless yet rewarding task. Like many
being a Caregiver:
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
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
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
distribution of this
Newsletter is being
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
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.
Meeting in 7B's Patient Lounge on Wednesday 6th December 2000
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.
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
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 were taken with the permission of all attendees at this meeting, on the basis that
what was reported would not identify speakers, and would concentrate on general themes.
Meeting in 7B's Patient Lounge on Wednesday 20th December 2000
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.
Meeting in 7B's Patient Lounge on Wednesday 17th January 2001
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
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
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.
Do any male transplant patients have side effects of hormone drugs, eg.
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
Notes were taken with the permission of all attendees at this meeting, on the basis that
what was reported would not identify speakers, and would concentrate on general themes.
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
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
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
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.
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
Eating Out Safely:
Further tips from Susan Russell, an experienced Rest Home cook, and Caregiver
♦ Avoid coleslaw, potato salad, rice salad and pasta salad. They contain a
combination of raw food with mayonnaise.
Eating Out Safely
♦ Avoid filled rolls containing cooked meat or seafood with salad
♦ Avoid pies and pastries in pie warmers
♦ 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
Choose hot dishes and cooked vegetables. Ask that decorative salad
NOTE: Many of the "foods to be avoided" can be safely eaten at home if
prepared and eaten straight away.
Video on Organ
During Organ Awareness Week last year, Reg and Maggie Green and their family
Donation for Public
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
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
Phone: 09 6300-935 Email: firstname.lastname@example.org
Check the website at http://nicholaseffect.com/index.html for The Nicholas Effect
and at http://www.unmc.edu/theview/june2599/story3.htm for a story about follow
up work Reg Green and his wife have been doing.
The Role of the
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 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.
If you would like further information about the role of the donor co-
ordinator, Janice Langlands and Ralph Maddison the two donor co-
ordinators in New Zealand, would be pleased to hear from you.
Ph: 09 630 0935 E-mail: email@example.com Website: http://www.organ.co.nz
There are special church services for donors and recipients of transplant organs
Services - advance
in Auckland and Christchurch each year. This year the Thanksgiving Services
Sunday June 10th
All are welcome to attend these services. More in the next issue!
Writing to Donor
In the last issue of "Hepatic Happenings
" we had the following question asked:
"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
This question was discussed in the Liver Transplant Group
on Wednesday 6th
December 2000, and the report from this meeting is on pages 2 and 3 of this
"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
♦ What happens - which includes a little on the recipient, see below.
"Although confidentiality is maintained for both the donor family and the
recipients, recipients can write an anonymous letter of thanks to the donor family.
These letters are channelled through the donor co-ordination office to the donor
families, if they wish to receive them. Donor families can also write to the
recipients and these letters are handled in the same way."
Other information on this site includes:
Did you know that the 13th World Transplant Games
are taking place this year in
Kobe, Japan? If you are an athlete and want more information, contact Brian
Curtain (phone (03) 342-8744 hm or e-mail firstname.lastname@example.org), the New
Zealand representative from this organisation.
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.
2. Cook rice in salted water until just cooked;
4. Pour fresh boiling water over the rice then spread on a shallow dish and allow
5. Drain pineapple pieces and corn and mix in a bowl - retain ¼ cup of pineapple
6. Blanch tomatoes in boiling water until skins peel off - chop, then add to
7. Mix cooled rice and salad together. Pour over pineapple juice;
9. Cover and refrigerate - Eat as soon as possible.
Clin Chem Lab Med 2000 Nov; 38(11):1209-11
In vitro pentamer formation as a biomarker of tacrolimus-related
immunosuppressive activity after liver transplantation.
Tolou-Ghamari Z, Wendon J, Tredger JM
Institute of Liver Studies, King's College Hospital and Medical School, London,
"Therapeutic drug monitoring of tacrolimus (FK) is widely performed to assist
adjustments of drug dosage but may be an inadequate surrogate of the
immunosuppression induced. The aim of this investigation was to develop an
alternative method for measuring FK-related immunosuppressive activity in blood
samples from liver transplant recipients. A pentamer formation assay (PFA) was
devised based on the attachment of the 12 kDa FK-binding protein (FKBP12) to
microtitre plates in the presence of calcineurin, calmodulin, Ca++ and FK.
Pentamer formation could be detected at FK concentrations > or = 0.2 microg/l by
optimising assay conditions, particularly by including Ca++ (0.5 mM) only during
the formation of the pentameric complex. Three methods (blood lysis, proteolytic
digestion and use of commercial solutions used in a microparticle enzyme
immunoassay (MEIA) technique) were incompatible with PFA measurements
after extracting immunosuppressive FK-related material from patients' blood
samples. However, therapeutic amounts of FK-related material could be
quantified by the PFA assay after extraction of blood samples with methanol.
There was a moderate correlation (r = 0.689) of FK equivalents assayed by PFA
with results using MEIA in 56 blood samples from 14 liver graft recipients, but no
obvious relationship of results to variables reflecting their clinical status."
PubMed is the U.S.'s National Library of Medicine's search service
Arch Surg 2001 Jan; 136(1):25-30
Impact of histological grade of hepatocellular carcinoma on the outcome of
Tamura S, Kato T, Berho M, Misiakos EP, O'Brien C, Reddy KR, Nery JR, Burke
GW, Schiff ER, Miller J, Tzakis AG
Division of Transplantation, Department of Surgery, University of Miami School of
Medicine, 1801 NW Ninth Ave, Highland Professional Building, Suite 511, Miami,
"HYPOTHESIS: Histological grade of hepatocellular carcinoma (HCC) is an important prognostic factor affecting patient survival after orthotopic liver
SETTING: University-based teaching hospital.
PATIENTS: Of 952 OLTs performed between June 1991 and January 1999, 56
OLT recipients had histologically proven HCC in the explant liver. Of those, 53
patients with complete clinicopathologic data were analyzed. A single pathologist
blinded to the outcome of each patient reviewed all histological specimens.
RESULTS: Median follow-up was 709 days. Overall survival for patients with
tumors sized 5 cm or less at 1, 3, and 5 years was 87%, 78%, and 71%,
respectively (Kaplan-Meier). Univariate analysis revealed the size, number, and
distribution of tumors; the presence of microscopic vascular invasion and lymph
node metastasis; histological differentiation; and pTNM stage to be statistically
significant factors affecting survival. Multivariate analysis revealed histological
differentiation and pTNM stage to be the independent and statistically significant
factors affecting survival (P =.002 and.03, respectively). When pTNM stage was
excluded from multivariate analysis, histological differentiation and size remained
the significant independent factors (P =.02 and.03, respectively). Three-year
survival for patients with small (</=5 cm) tumor with well- to moderately
differentiated and poorly differentiated HCC was 82% and 67%, respectively.
Three-year survival for patients with large (>5 cm) tumor with well- to moderately
differentiated and poorly differentiated HCC was 62.5% and 0%, respectively.
CONCLUSIONS: In our retrospective experience, histological differentiation had a
statistically significant effect on the prognosis of HCC after OLT. However, before
altering the current OLT selection criteria for patients with HCC, prospective
studies are required to confirm the impact of histological grade on clinical
PubMed is the U.S.'s National Library of Medicine's search service
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).
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:
Ph: (City and West) 838-7867 (North Shore) 444-4456 (South & East) 576-4490
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
♦ Toni has been enjoying her stay in London, and catching up with other nurses
Young Kauri Awards: Teen spirit survives body blows
"Young Kauri recipient Oliver Polson had a pretty lean Christmas Day. The Te Kuiti 15-
year-old, who has a primary immune deficiency syndrome, was not allowed to eat for six
hours before yet another medical procedure. "I couldn't believe it," he says. "All that buildup and then no chocolate." Oliver spent much of last year in the Starship children's hospital in Auckland. He underwent the first paediatric liver transplant in New Zealand in May, followed by a bone marrow transplant six weeks later. Both grafts are strong but Oliver is now fighting off an infection, to which he is susceptible. Mum Kate Polson lives at Ronald McDonald House for much of the time, to be close to Oliver. Her husband, John, and 8-year-old son, Paddy, remain in Te Kuiti. Mrs Polson says the separation has been difficult, but Oliver's illness has also pulled the family together. "It hasn't been easy for us but Oliver is worth it." The family have lost two children to the same rare genetic disorder. First-born Jane died 14 years ago, aged 2, and Jack died at age 8, four years ago, before his bone marrow operation could take place in Australia. Mrs Polson says it is possible that she and her husband share a gene that caused them to have three children with the disorder. Paddy has a normal immune system. Oliver might have spent much of last year in hospital but was not been idle. He completed his fourth form exams, something he describes as "a personal achievement." He scored over 75 per cent in all his core subjects, coming fourth in English and science and sixth in maths at Te Kuiti High School. Mrs Polson says the school was very helpful with a long-distance learning schedule for her son. Oliver's aim for the new year is to start fifth form back at the high school. Mrs Polson says her son showed a phenomenal amount of energy and strength last year. "One of the things John and I have always said is that the doctors have provided the medicine and he's done the rest." Oliver is also an armchair sports critic and a keen Kiwi music fan. He thinks he may follow his interest in graphic design when he leaves school. "I might go into architecture. I'll stay well away from med school, that's for sure." "
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