I went to worship at Holy Trinity Cathedral, and for once I am lost for words to describe one of the most moving experiences of my whole life to date.

It was called: "A Service of Thanksgiving in recognition of those who have given the gift of life to others." But that describes not the half of it, for the Service was arranged by Janice Langlands and Ralph Maddison, National Transplant Donor Co-ordinators.

There were a great number of people there. Almost everyone present had been very close to the questions of life and death– either for oneself, or a loved one.

Some came following the very difficult decision to donate the organs of a loved one, so that others might receive life itself, or at least an enhancement of life through such a gift as a cornea so that sight might be recovered.

Others came very humbly, giving thanks to the families of the unknown donors whose death had brought them life and hope- thanks to the skills and dedication of the whole transplant team which had made it all possible.

Those who had received a transplant came forward to light a candle as a symbol of renewed life and health.

Members of families of those who had donated organs came forward to receive the gift of the Camellia "Donation" at the hands of the co-ordinators and some of the young recipients.

Some people came forward twice.

One such couple were John and Susan.

Only 18 months before John would himself need the altruism of a donor family for the replacement of his liver, Susan had taken the telephone call from the hospital asking if she would agree to donate the corneas and heart of their only son who had just been killed in a motor-bike accident.

No one who has not been faced with such things can ever know exactly what it means to those involved.John and Susan receive the gift of a Camellia.

Little wonder the Cathedral was hushed. There were tears, for memories were being revisited by very many people. Understandably, one’s sense of joy w
as muted.

For some, this writer included, earlier fears and pain came to the fore. Yet afterwards, there was a feeling of release, and a renewed sense of the value of the gift of life.

John puts it this way: "It’s hard to put into words just how grateful and fortunate I feel. A few short months ago I believed I probably wouldn't see my next birthday, the America’s cup, or the new millennium.

"It was horrifying and shocking. To look at family pets with the belief they would probably outlive me was painful.

"Trying to come to terms with leaving my wife after 32 years was appalling so soon after the shattering tragedy of losing our only child.

"But now, thanks to you all, every day is an unexpected miracle!"

 

Stephen Brooker
2000

Reprinted with permission from "The Anglican", Volume 3 Number 2 at page 7.  July 2, 2000.

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 3rd on the list in my blood group, I received that much awaited phone call.

It really does happen!

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 58th 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.  [Transplantees are on Prednisone].

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.

 

 

ABSORPTION
the degree and speed at which a drug enters the bloodstream from the small intestine.

ACUTE TUBULAR NECROSIS (ATN)
reversible kidney damage resulting in delayed kidney function. Among other factors, it may be caused by quality of donor organ, time of organ storage before transplantation, or medications to prevent rejection.

ALKALINE PHOSPHATASE
an enzyme produced by liver (and other) cells; elevated blood levels of this substance may indicate abnormal function of the liver or other organs.

ALLOGRAFT (allogenetic graft or homograft)
a graft between two individuals who are of the same species (eg. human) but have genetic differences.

ANTACID
a drug that aids in protecting the digestive system and relieves heartburn and digestive discomfort.

ANTIBODY
a protein produced by the body to eliminate foreign substances, such as bacteria.

ANTIGEN
a foreign molecule or substance, such as a transplant, that triggers an immune response. This response may be the production of antibodies, which, in turn, try to inactivate or destroy the antigen (transplanted organ).

ANESTHETIC
medication that reduces pain by dulling sensation.

ARTERIOGRAM
an x-ray of the arteries taken with the aid of a dye.

ASCITES
excess fluid in the abdomen.

ATHEROSCLEROSIS
a buildup of fats in the lining of the arteries that may interfere with the flow of blood.

B Cell
a specialized white blood cell responsible for the body's immunity. B cells play a central role in antibody production.

BACTERIA
small organisms (germs) that can cause disease.

BILIARY STENOSIS
narrowing or constriction of a bile duct.

BILIARY TREE
all passageways inside and outside the liver that carry bile to the intestines.

BILE
a fluid produced by the liver, stored in the gallbladder, and released into the small intestine to help absorb dietary fats.

BILE DUCTS
the tubes through which bile flows.

BILE LEAK
a hole in the bile-duct system that causes bile to spill into the abdominal cavity.

BILIRUBIN
an orange-colored substance in bile produced by the breakdown of red blood cells.

BIOAVAILABILITY
a measure of how much of an administered drug is absorbed into the bloodstream, actually reaching the intended site of action in the body. For example, medicine is absorbed from the GI tract, travels through the bloodstream, and reaches the organ tissues, where it works to fight infection, prevent rejection, etc..

BIOPSY
the removal and examination of tissue for diagnosis.

BLADDER
the part of the urinary tract that receives urine from the kidneys and stores it until urination.

BLOOD UREA NITROGEN
a byproduct of protein breakdown in the body.

BRAIN DEATH
when the brain has permanently stopped working, as determined by a neurological surgeon, artificial support systems may maintain functions such as heartbeat and respiration for a few days.

BUN
BUN stands for blood urea nitrogen, a waste product normally excreted by the kidney. Your BUN value represents how well the kidneys function.

CADAVERIC DONOR
an individual who has recently died of causes that do not affect the function of an organ to be transplanted. Either the person or the person's family has generously offered organs and/or tissues for transplantation.

CELLCEPT® (Mycophenolate) 
an immunosuppressive drug used with other immunosuppressants to prevent the rejection of the transplanted organ. Also known by its chemical name, myophenolate mofetil.

CHOLESTEROL
a form of fat that performs necessary functions in the body but can also cause heart disease; cholesterol is found in animal foods such as meat, fish, poultry, eggs, and dairy products.

CIRRHOSIS
a disease causing irreversible scarring of the liver.

CYCLOSPORINE
the immunosuppressive ingredient in Neoral® (cyclosporine capsules and oral solution for microemulsion) and Sandimmune® (cyclosporine), an earlier form of cyclosporine. Neoral® and Sandimmune are not bioequivalent and cannot be used interchangeably without physician supervision.

CMV (CYTOMEGALO VIRUS)
a virus infection that is very common in transplant recipients; it can affect the lungs and other organs as well; a member of the family of herpes viruses.

COAGULATION
blood clotting.

CORTICOSTEROIDS
a category of immunosuppressive medications that includes prednisone and prednislone.

CREATININE
a substance found in blood and urine; it results from normal body chemical reactions; high blood creatinine levels are a sign of depressed kidney function.

DETOXIFY
to change a harmful substance into a safer form.

DIABETES
a disease in which patients have high levels of sugar in their blood.

DIALYSIS
the process of cleansing and achieving chemical balance in the blood of patients whose kidneys have failed. Dialysis may refer to hemodialysis or peritoneal dialysis (PD).

DIASTOLIC
the bottom of two blood pressure numbers, which measures blood pressure when the heart is at rest.

EDEMA
excess fluid in body tissues; swelling of the ankles, for example, is a sign of edema.

ELECTROCARDIOGRAM
a recording of the electrical activity of the heart.

ELECTROLYTE
generally refers to the dissolved form of a mineral such as sodium, potassium, magnesium, chlorine, etc..

ENZYME
a protein made in the body and capable of changing a substance from one form to another.

FETUS
a human embryo in the mother's uterus.

GALLBLADDER
a muscular sac attached to the liver; stores bile.

GASTROENTEROLOGIST
a physician who specializes in the care of the digestive tract.

GINGIVAL HYPERTROPHY
enlargement of the gums. It is a common side effect of cyclosporine therapy, but can be managed with good oral hygiene.

GLUCOSE
a type of sugar found in the blood.

GRAFT
an organ or tissue that is transplanted.

GRAFT SURVIVAL
when a transplanted tissue or organ is accepted by the body and functions properly. The potential for graft survival is increased when the recipient and donor are closely matched, and when immunosuppressive therapy is used.

HELPER T CELL
the specialized white blood cell that tells other parts of the immune system to combat infection or foreign material.

HEMATOCRIT
a measure of the red-blood-cell content of blood.

HEMODIALYSIS
a method of dialysis in which blood is purified by circulating through an apparatus outside the body (sometimes called an "artificial kidney").

HEPATIC
relating to the liver.

HEPATOLOGIST
a physician who studies the liver and treats liver disease.

HEPATOMEGALY
an enlarged liver.

HERPES
a family of viruses that infect humans; herpes simplex causes lip and genital sores; herpes zoster causes shingles.

HIRSUTISM
an excessive increase in hair growth - especially male-pattern hair growth in a female. Hirsutism is a common side effect of corticosteroids and can also occur with cyclosporine therapy, but is easily treated with depilatory creams or other methods of hair removal.

HISTOCOMPATIBILITY
the examination of human leukocyte antigens (HLA) in a patient, often referred to as "tissue typing" or "genetic matching". Tissue typing is routinely performed for all donors and recipients in kidney and pancreas transplantation to help match the donor with the most suitable recipients. This helps to decrease the likelihood of "rejecting" the transplanted organ..

HLA (human leukocyte antigens) system
genetically determined series of antigens that are present on human white blood cells (leukocytes) and tissues.

HYPERTENSION
high blood pressure.

IMMUNE RESPONSE
any defensive reaction to foreign material by the immune system.

IMMUNE SYSTEM
the system that protects the body from invasion by foreign substances, such as bacteria and viruses, and from cancer cells.

IMMUNITY
a condition of being able to resist a particular infectious disease.

IMMUNOSUPPRESSIVE AGENTS
medications given to prevent rejection of a transplanted organ.

IMURAN®
an immunosuppressive drug used with other immunosuppressive drugs to help prevent the rejection of a transplanted organ. Also known by its chemical name, azathioprine.

IV, or INTRAVENOUS
refers to giving medicines or fluids directly through a vein.

IV CATHETER
a small needle with a hollow tube inserted into a vein and used to give medicines or fluids.

JAUNDICE
yellowing of the skin and eyes caused by excess bile products in the blood.

KIDNEY
one of the two kidney-bean-shaped organs located on both sides of the spine, just above the waist. They rid the body of waste materials and maintain fluid balance through the production of urine.

LIVER ENZYMES
substances produced by the liver and released into the blood; these are measured to assess liver function.

LIVING-RELATED DONOR (LRD)
a blood relative who donates an organ.

MATCH
the compatibility between recipient and donor. In general, the more closely the donor and recipient "match", the greater the potential for a successful transplant.

MICROEMULSION
a suspension or mixture of tiny droplets of one liquid in a second liquid, such as the smooth mixture that is formed when Neoral® (cyclosporine capsules and oral solution for microemulsion) combines with fluids in the digestive system.

NEPHROLOGIST
a physician who studies the kidney and treats kidney disease.

NEUTROPHIL
a type of white blood cell.

NONCOMPLIANCE
failure to follow the instructions of one's health care providers, such as not taking medicine as prescribed or not showing up for clinic visits.

ORALLY
by mouth.

ORGAN PRESERVATION
between organ procurement and transplant, organs require special methods of preservation to keep them viable. The length of time that organs and tissues can be kept outside the body varies, depending on the organ, the preservation fluid and the temperature..

ORGAN REJECTION
an attempt by the immune system to reject or destroy what it recognizes to be a "foreign" presence (for example, a transplanted liver).

PCP
Pneumocystis carinii pneumonia, a type of pneumonia seen primarily in patients whose immune systems are suppressed.

PERITONEAL DIALYSIS
a method of purifying the blood by flushing the abdominal cavity with a dilute salt solution.

PLATELET
a small blood cell needed for normal blood clotting.

POTASSIUM
a mineral essential for body function.

PREDNISONE
a manufactured steroid hormone taken by most transplant recipients to help prevent rejections.

PROPHYLACTIC MEDICATION
medication that helps prevent disease.

REJECTION
an immune response against grafted tissue, which, if not successfully treated, results in failure of the graft to survive.

RENAL
refers to the kidney.

RETRANSPLANTATION
due to organ rejection or transplant failure, some patients need another transplant and return to the waiting list. Reducing the number of retransplants is critical when examining ways to maximize a limited supply of donor organs..

SENSITIZED
being immunized, or able to mount an immune response, against an antigen by previous exposure to that antigen.

SHINGLES
a herpes virus infection (herpes zoster) that usually affects a nerve, causing pain in one area of the body.

SODIUM
a component of table salt (sodium chloride); an electrolyte that is the main salt in blood.

SURVIVAL RATES
survival rates indicate how many patients or grafts (transplanted organs) are alive/functioning at a set time posttransplant. Survival rates are often given at one, three and five years. Policy modifications are never made without examining their impact on transplant survival rates. Survival rates improve with technological and scientific advances. Developing policies that reflect and respond to these advances in transplantation will also improve survival rates..

SYSTOLIC
the top of the two blood pressure numbers, which measures the maximum blood pressure reached as blood is pumped out of the heart chambers.

THRUSH
a fungus infection in the mouth.

TRIGLYCERIDES
a form of fat that the body makes from sugar, alcohol, and excess calories.

T CELLS
a white blood cell responsible for the body's immunity. T cells can destroy cells infected by viruses, graft cells, and other altered cells.

T-TUBE
a tube placed in the bile duct that allows bile to drain into a bag outside the body.

TISSUE TYPING
a blood test (performed prior to transplantation) to evaluate the closeness of tissue match between donor's organ and recipient's HLA antigens..

URINARY TRACT INFECTION (UTI)
an infection of one or more parts of the urinary tract.

VENTILATOR
a machine that helps a patient breathe.

VIRUS
a very small agent (germ) that causes infection.

WAITING LIST
after evaluation by the transplant physician, a patient is added to the national waiting list by the transplant center. Lists are specific to both geographic area and organ type: heart, lung, kidney, liver, pancreas, intestine, heart-lung, kidney-pancreas. 

WHITE BLOOD CELLS
cells in the blood that fight infection; part of the immune system.

Each of the skilled health care professionals who make up the transplant team take a personal interest in answering a patient's questions and taking care of his medical needs. They will also help the patient keep his spirits up along the way.

The patient is the most important member of the transplant team. To a certain extent, all the other team members will respond to his cues. The patient's physical, emotional, and practical needs will help them shape a personalized pretransplant and posttransplant treatment program.


Transplant Surgeon

The transplant surgeon performs the actual transplantation procedure and monitors a patient's medication before, during, and after surgery. He or she will assess the quality of the donor's liver before surgery, and monitor the patient's general and liver status following transplantation.

He or she will also check the patient's medication needs, and periodically check the incision to make sure it is healing properly.


Transplant Physician (Hepatologist)

A transplant physician monitors all non-surgical aspects of patient care. A transplant patient will see this doctor often. The transplant physician will perform examinations, check test results, and adjust medication as needed. A patient should not be shy in asking questions and alerting his physician regarding changes in the way he feels, no matter how insignificant it may seem.


Transplant Coordinator

This team member, usually a registered nurse, will have two key responsibilities:

  • First, he or she will coordinate all the events leading up to and following surgery. These may include scheduling pretransplant testing, locating donor liver, testing for donor compatibility, contacting the patient once a liver has been found, and making sure that the patient has proper follow-up care.
  • Second, the coordinator will teach the patient how to take care of himself before and after transplantation, including how to take medication and when to return to the transplant center for follow-up visits. He or she can put the patient in touch with community services that will make life easier for him and his family.

Nurse Practitioner

Nurse practitioners are responsible for monitoring your daily status and care, and will meet with you regularly during your clinic visits. They will provide patient and family education, including teaching you how to check your vital signs and identify any signs of infection. They will help you learn how and when to take your new transplant medications. They play an important role in alerting the team to any potential problems.


Floor or Staff Nurse

This nurse will help coordinate the activities of the transplant patient's other caregivers, as well as tending to the patient's needs during his hospital stay and preparing him for discharge. The staff nurse will also keep the lines of communication open between the patient and the other members of the transplant team.


Physical Therapist

Exercise will improve a transplant patient's circulation, making him feel stronger, helping him avoid excessive weight gain, and increasing his sense of well-being. He or she will set the patient's exercise limits after surgery and will advise when it is safe to increase activity. A patient should ask his therapist to help devise an exercise plan that will be beneficial.


Dietician

Following doctor's orders, a registered clinical dietitian will create a special diet plan that will help a patient stay healthy and avoid excessive weight gain after surgery. The patient should follow the diet plan prepared for specifically for him. Proper nutrition can speed recovery and help a patient to stay healthy.


Psychologist/Psychiatrist

A patient and his family members may find it helpful to talk about their feelings with a professional before and after surgery. Frank discussion may help cope with the transplant experience and with the changes it will make in a transplant patient's life. The psychologist or psychiatrist can offer insight and support along every step of the way.


Social Worker

The social worker will link the patient to services and people in the community who can help with recovery after leaving the hospital. If the patient needs transportation, help at home, or a hand when going back to school or work, the social worker will help arrange it. The social worker can also advise about Medicare, Medicaid, and other insurance coverage, as well as helping with psychosocial and family matters.


Pharmacist

Since medication will become a regular part of a patient's life before and after surgery, the pharmacist will be available to educate the patient and family. He or she can give advice about drugs, including the immunosuppressive medications that will help prevent the body from rejecting a new liver.

Thesis on the social and economic well being outcomes of liver transplant recipients

Bethli Wainwright

Liver transplantation as a catalyst for change?

The lived experience of liver transplant recipients in New Zealand

Wainwright, Bethli

Abstract:

This thesis reports on phenomenological research into the lived experience of liver transplant recipients in New Zealand in 17 qualitative interviews, and a qualitative survey of 49 liver transplant recipients across New Zealand. A new survey tool was developed for this work. A brief background to liver transplantation in New Zealand and internationally is provided. The perspectives of liver transplant recipients are then shown in relation to their experiences on becoming unwell, waiting for transplantation, in Intensive Care and the ward, and their way of coping with a donor liver from another human being. The thesis concludes with recommendations for immediate implementation by the New Zealand Liver Transplantation Unit. Appendices include survey responses on an Excel spread sheet and a database of references on liver transplantation to assist further research in this field.

Here is a link to Bethli's thesis:  http://aut.researchgateway.ac.nz/handle/10292/2536