The Gift of Life - Organ Donation
Alison’s List is an initiative designed to highlight the importance of organ donation. Sadly missed by all Alison's colleagues, friends and family - it is a privilege to honour her through 'Alison's List'. Those who worked closley with Alison admired her huge passion and commitment to health service delivery, especially in our kidney community. Our friend's memory is a constant reminder of Kidney Health Australia's mandate to be vigilant on behalf of those with kidney disease and their families. - Our dear friend and work colleague, passed away in 2004 of rare complications following a successful kidney transplant. She was a highly qualified social worker whose commitment to social justice and advocacy for people with kidney disease was evident.
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Alison McMichael
A message from Sally... Alison's daughter - Mum would have been thrilled at the creation of "Alison's list". I am so proud of her and all the fellow kidney patients waiting for the gift of a transplant. My mother Allie had a life long passion for helping others. Her commitment to social work began when she travelled to Tasmania to aide victims of the 1960-61 fires. She travelled to New Guinea as a social work student to work with a local education program. She was founder of 'Riding for the Disabled' in Sth Australia and practiced social work in many fields including IVF, adoption and sexual assault. She also lectured at Monash, Melbourne and Deakin Universities.
Throughout most of this she was a single mum. When she found out she had polycystic kidney disease she chose not to feel sorry for herslf but to educate herself and others with a voracious spirit. By the time she joined Kidney Health Australia as Victorian Health Services Manager, she was on dialysis. Her work with the Kidney Care Program - which provides peer support for people with kidney disease - was a perfect symbiosis of her lifelong commitment to patient advocacy.
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Richard Kuperman's 25th Kidney Transplant Anniversary 2009 - Richard is a recipient of a kidney transplant which he was lucky enough to received 25 years ago. Richard just celebrated his anniversary and was interviewed for a TV show - the feature was on organ donation.
Richard has made it his lifetime mission to raise awareness in his community of how important it is to be an organ donor, so that a person who is waiting for an organ can get a chance at a normal life. It is rare for a transplant to last 25 years and is due to Richard's focus on a healthy lifestyle. He speaks from his own experience educating the public wherever he can on the importance of living a health lifestyle, to keep your body as health as possible and therefore care for your kidneys. We can't live without one!
See our publication Living with Reduced Kidney Function and Living with Kidney Failure at our webpage, Health Publications. This book is for people who have recently been informed that they have reduced kidney function related to the early stages of chronic kidney disease - info about the normal functioning of your kidneys, about the first signs indicating that they may not be working properly and about what you can do to try and prevent further development of your kidney disease. Free downloads of extra health record sheets, treatment plans and other tools from this handbook are available below, to print whenever you need them.
Robert Baker - discovered that he had kidney disease nine years ago at the age of 61. He has Glomerulonephritis (IgA nephropathy), a group of diseases that damage the kidney’s tiny filters called glomeruli and is the most common cause of kidney damage or kidney failure.
 Robert’s renal trouble was discovered after he had undergone an operation. Tests were undertaken to find out what was not working properly in his body and it was at that time that Robert found out that he had kidney disease. He started peritoneal dialysis in 2001 but was not very comfortable with the treatment so Robert changed to haemodialysis at the beginning of July 2002. He has been a patient at St Vincents Dialysis Unit ever since. The dialysis sessions last 4.5 hours and Robert has them three times a week. Visiting the hospital is now part of his normal routine and he see the dialysis machine as “part of his body”.
Robert lives on his own and is proud that he is able to take care of himself, even though he knows that he will have to continue to have regular check-ups and live with what he calls this “strange part of my body” for the rest of his life.
Melissa Darnley - In early 2009, Mel received her kidney transplant. 
For over thirteen years Melissa was able to take care of herself with diet, exercise and medication, without having to undergo dialysis. However, she has a serious disease and is about to begin dialysis at a hospital an hour’s drive from her home in a small country town in New South Wales. “It was such a shock when I was diagnosed at 36. I wouldn’t even say the ‘K’ word for years and felt incredibly lonely, because I felt I was the only one my age going through this.
It seemed so unfair, all my buddies just cruising through life. “I knew dialysis would happen one day and about a year ago I got over the fear and finally started reading up on it. That’s when I discovered an incredible local network of people with kidney disease. They’re everywhere – friends of friends, someone’s auntie, it goes on and on. I’m certainly not lonely anymore. Kidney people share so much empathy."
“My dialysis is in place now and I’ll do it overnight. I want to learn how to do it at home and get back to work, because people can. Seeing kidney patients in hospital was a shock. ‘Is that me?’ I asked myself. Because it’s not. I’m a dedicated teacher-librarian at a primary school and also belong to a samba drumming band. We wear costumes and wild feather headdresses and we’re hot!”
Jo Flanagan - every woman in her 30s knows the dread of a ticking biological clock. As the years progress that ticking grows louder and the pressure builds. But for 32-year-old Jo Flanagan that ticking has taken on the beat of a drum, with her wish to have children put on hold indefinitely while she waits for a kidney transplant.
 Jo was born with a condition that affects the kidneys called Reflux Nephropathy, but it wasn't until she was 11 that she was properly diagnosed. At first this condition had little impact and she continued to go about her life normally until at the age of 30 when Jo and her husband decided to try for kids. A routine blood test by the doctor showed that Jo's kidneys had begun to fail. Within 12 months she had started dialysis and was on the transplant waiting list. "The greatest impact has been on my plan to have kids - all women in their 30s would feel the pressure but I feel it even more so while I'm waiting for the call."
Jo noted when waiting for her transplant that "the hardest thing to accept is the unknown -you could get the call tomorrow, or next month, or in five years. It's the waiting that is the hardest."
Ethan Hart - Paul and Ange Hart’s first baby, Ethan was born in May 2004 and although premature, appeared to be extremely well until day 17, when he was suddenly very sick. “Whilst I knew Ethan’s condition was serious I didn’t know how serious until a nurse just happened to say the words ‘acute renal failure’ one day. The doctors didn’t tell me. That’s when I learned that you can lose 90% of renal function without displaying any symptoms. It was so frightening and there was absolutely no family history of kidney disease.
“Fortunately my father has a medical background and helped us work out what questions we needed to ask. Otherwise, we would have been left more or less in the dark. But we learned fast. Ethan had emergency surgery, during which a nephrostomy bag was inserted. Unfortunately, the bag’s tube became dislodged and two further operations took place when he was one month old.
“Ethan is a gloriously happy baby now, who loves giggles and cuddles and is almost walking. He has magnetic blue eyes and very dark hair and is very affectionate and responsive. He sees a specialist every couple of months and if he vomits, has a temperature or diarrhoea, we have to have a urine sample analysed immediately.
“But the poor little boy, he was in neo-natal intensive care for a long time and had so many blood tests that when he sees a tourniquet or even a nurse, he goes berserk with fear. It’s heart-rending, but he recovers well and is our own happy little baby again soon.”
Justine Hunt - diagnosed at age 8, Justine received a kidney transplant when she was eighteen. Twenty-four years later, she has enjoyed a long teaching career and now runs a pet care business while still teaching part-time. “ am extremely fit and healthy and play tennis at an A Grade level. I don’t like to boast, but I’m really an excellent tennis player and have even thought about the Transplant Olympics, but I’m just too busy to do further training. I already train three or four times a week and when time allows, run or ride my bike up to 30 kilometres during those sessions. When people want a social game with me I have to warn them that I’m a very strong player and have played in men’s singles competitions very comfortably.
However, I only play at night because the medication I must take every day of my life to counter rejection of the transplant has made me highly photosensitive and I have had dozens of small skin cancers removed. I think about my kidney’s donor quite often, especially on the anniversary of my transplant, 15 March 1981. I wonder if their parents are still alive after all this time and how they feel about it. For me, that person is still partly alive. I feel regret for them, but also compassion and enormous gratitude.
Sue Linnett - talks about her kidney failure, saying its a family condition. She doesn’t mean it’s genetic or that her relatives have the same problem, but that her kidney failure impacts greatly upon her sister as well as herself. Sue’s sister is her principal carer and has made many changes and compromises to help Sue. "It not only eats into my time, but also into hers. It really does affect her and takes up a great portion of her life."
Sue began dialysis five and half years ago when she was diagnosed with complete renal failure. Now aged 48 she makes the journey to her local hospital three times a week to dialyse. "It takes away your freedom to choose where you want to be and when. I have to be here or near a suitable hospital every second day."
She says it was this lack of flexibility that made her choose to leave her rural NSW home and move to Tasmania. She says she feels the island state offers a lot to travel and see in between dialysis appointments. "If on a day off you are feeling good, and that is rare, then you want to be able to go and do and see things like a normal person. There is so much here that I can travel to and still be back the same day."
Despite this Sue does dream of taking a longer holiday or to have the spontaneity to choose to go some where at the last minute. "You really do need to plan your life around dialysis appointments."
Lisa Lordanidis - is waiting for a kidney transplant which means putting on hold a normal family life. In 1995, Lisa was diagnosed with a rare disorder, in which the immune system attacks the kidneys. By 2002 Lisa had complete renal failure, relegating her to five hours of dialysis three times a week and a lengthy wait for a kidney transplant.
 The impact of this has been great, but one of the hardest to bear has been on her home life. Lisa's 12-year-old daughter who has had to "grow up fast" and has a lot to deal with at home - I think sometimes she is happy to go to school because she can feel normal there". Lisa's daughter and husband pitch in and help around the house and with the general chores that Lisa used to relish. "I can't do all the normal things that I would like to do. I'm always tired and tend to get quite sick."
But the impact doesn't stop at home. School functions and any of the normal extra curricula activities that other mothers attend are not always possible for Lisa. "I just can't make it to everything. If my daughter has a presentation on and its not when I am dialysing then it's like 'yay I can go'. " She says that until she gets a kidney transplant her life feels like it is on hold. "My life is in a standstill, I feel we are not progressing at all and won't until I get a kidney transplant- then I can get on with things like normal."
Cheryl Maracic - for those of you who may be on dialysis and waiting for a transplant, or have already had one, I hope my story may inspire you.
Cheryl was a sick little baby and spent nine months in hospital when she was just five years old, rarely went to school due to illness and finally had her first kidney transplant at 14 on 7 May 1967- the first child transplanted at the old Prince Henry Hospital in Little Bay, Sydney and the first to receive a kidney from a relative and live donor, her father. Today her Dad is a robust and healthy ‘grey nomad’ traveling around Australia in a campervan.
When Cheryl’s first child was born in 1972 - she was one of only five women in the world aat that time to have given birth post-transplant. When her second child was born it may well have been a world first. When her children were old enough Cheryl went to work. “I managed clothing stores, sold cosmetics for Revlon, worked as a dispensary assistant in a pharmacy, as a 000 watchroom operator for Queensland Fire Brigade, worked for the Justice Department in the Cairns Courthouse". She then worked with husband Larry in their security business, got my security licence and became office manager doing rosters and bookwork. I loved to work and study because of all that time in hospital as a kid. I was hungry for knowledge.
At one time we had trucks working out of the Rocklea fruit and vegetable markets. I was strong enough to push a fully loaded trolley-jack around, so I learned to drive a forklift. The other forklift drivers would laugh as I was about 50kg in weight and under 5’ tall but could load an eighteen-pallet pantech trailer putting the last two pallets in side by side and never damage any produce. That’s the potatoes and onions – they always go on last.
You should have seen me, long blonde curly hair, long red fingernails, little shorts and tops in bright colours – I’m a bright colour sort of a girl. I’ll never forget a child calling out in the market: “Mummy, look! A lady forklift driver!"
“We were a bit short of a buck once and I got a job in a factory making caravan hatches – it was all high powered drills used in both hands, so that was the end of the fingernails. You had to be able to make a window in 60 seconds and they clocked me at 57 seconds." Then I started to get sick again and was diagnosed with end stage renal failure. I didn’t work at all. I didn’t even do the cooking or laundry – Larry did the lot.
So it was back on dialysis for twelve months. I did CAPD (continuous ambulatory peritoneal dialysis) at home and spent that time designing and making clothes suitable for wearing during dialysis and resting. I was on peritoneal dialysis when I was a kid, but it was pretty different back then. I remember the hospital staff gave me my first treatment to the tune of Sonny and Cher singing 'I Got You Babe'. There were no home machines then and no microwaves to warm the solution beforehand. At that time I was considered too small for haemodialysis and peritoneal was somewhat tortuous.
I decided that I was going to continue living my life as normally as possible while on dialysis. When I went shopping I often stopped in the carpark for a bag-change, the bag already warmed by the sun. I’d have a cup of tea in a coffee shop and ask if they minded if I did a bag change at my table. I always carried a special plastic tablecloth and other essential items. Store owners would warm the solution in their microwave. Everyone was happy to help. We are told we can do almost anything on dialysis, even go snorkeling – which I did when we moved to Cairns. The ocean water out on the reef is very clean and the sun is the best sterilizer. I had to wear a bikini, as a one-piece was not suitable. I took my dressing off and snorkeled wherever I wanted to. When I returned to the beach I lay down in the sun until my wound was dry then dressed it again.
Then there were the EPO injections. Larry does not like hospitals, mainly because of the weird machines attached to a body via needles and/or with blood in it. I’m fairly seasoned but he actually gets quite sick and turns a terrible grey colour. However, when I went on EPO injections I was just too scared to give them to myself. So Larry says: “If you can do this, then I can learn how to give you the injections.” The first time he gave me the injection he was that tense that afterwards I had to uncurl his toes for him and the fingers of his left hand. But he did that for me.
In 1995 Cheryl had a second transplant, this time from a deceased donor. “It was from a young woman. I wrote to her relatives afterwards and said that although words can’t express how I feel about their decision at that traumatic time. I told them my second grandchild had just been born and if one day they saw a grandma enjoying her grandchildren in the park, it just could be me, and they'd given me that chance. Sometimes I wonder about how they are coping. Getting on with my own life doesn’t lessen my gratitude.
While on dialysis I made a promise that if I made it this time, I would complete a computer course and earn my living by sitting on my bum instead of standing on my feet. I had a few doubts while doing the course as I was the older student. However, I survived and managed to get contract work with the Department of Education. Then I gained a permanent position with the Department of Justice, working in the Cairns Courthouse. I used to perform marriages as well as many other court duties.
A couple of months ago I was up at the hospital and ran into this man who was wandering around the renal unit in a dream and looking very unhappy. I got talking to him and warned him against thinking this was the biggest thing in his life and that he was never going to be able to do anything for himself again. People tell you a lot of myths and everyone’s an expert. I told him life’s too short to lock yourself up, get out there and live! I relayed to him what was told to us a few years ago: think of having a transplant as a holiday from dialysis. Sometimes it is only a short holiday, other times it can be for many years. My first transplant lasted 28 years! You can repay them by living. You are only limited by your imagination. When you wake up after the operation you’ll just feel so much better. Of course I still take anti-rejection medicine every day – you have to. It makes you photosensitive, so I keep loads of self-tanning lotion at home to look tanned. I don’t go out in the sun and when we go on long trips, we drive at night. I have completed my Certificate 4 in Financial Services. Then I can work as an assistant accountant. On my 47th birthday I got my motorbike licence. That’s my sport now. I love it and I’m very careful.
Bill McGrotty - came to Australia from Scotland almost 40 years ago. Bill loves living in Australia and to this day remains one of the few people who actually rates Melbourne's weather as a good point. But if the 63-year-old could fulfil just one wish it would be to return to Scotland for a holiday to visit his family. "For the first time in my life I have enough money to do whatever I would like, but it just isn't possible."
Bill was diagnosed with acute kidney disease around 17 years ago, which means he needs to go on haemodialysis every second night. This makes a trip to Scotland almost impossible. Bill can book into Scottish hospitals for dialysis but there is a 12-month waiting list. "It means I need to know 12 months in advance where I'm going to be every day and honestly I don't want to go over there for six weeks, spend all of that money, to spend three weeks in hospital."
As a sales manager, Bill is supposed to travel throughout Australia and New Zealand, but his dialysis schedule means he needs ask others to do the trips for him. If the travel is unavoidable then Bill must carefully orchestrate it so that he is not away from home for any longer than two days. "I had to go to New Zealand for a four-hour meeting which essentially meant three days of travel to get there and home. On my way home I had to ring my wife so that she had everything ready and then I got straight out of the car and went on the machine."
 Terry Mikkelsen - has been undergoing dialysis since September 2004. Earlier that year, Terry had started to feel sick and was vomiting. He was worried because he hadn’t had any health problems. Unfortunately, like many others, he found out that he had kidney problems once it was too late. His kidneys have both failed.
When Terry started on haemodialysis, he suffered a lot of pain from the dialysis machine but now he tries to get on the best he can and lead a normal life. He doesn’t work and lives with his father and sister who take care of him. Terry says of his situation, “You just have to get on and help yourself”, which is testament to the strong and positive person that he is.
 Albert Monforte (transplanted in 2006) said of his time waiting for his transplant - "It was not only physically taxing but emotionally taxing". Albert was diagnosed with reflux when he was four years old and by the age of 13 started dialysis. Just under a year later Albert was lucky enough to receive a kidney transplant, but by 2001 the body had rejected the new kidney and he began dialysis again.
"It was a struggle to fit everything in. I had to juggle working full-time, dialysing three times a week and having a normal social and family life."
The 33-year-old got up at 4 am every Tuesday and Thursday to go to the hospital to dialyse. When finished, he went to work at the bank where he worked a six-hour day. Then every Saturday Albert returned to hospital to dialyse. "Sunday was my only free day and I really just wanted to rest all day."
Albert said his condition also impacted upon his wife. He was often too tired to go out and do things with her on the weekend. This also flowed through to other members of the family with visits to his mother or his wife’s parents very rare. "I think they started to understand I didn’t have a lot of time and the time I had free, I was really tired. Overall it’s my quality of life that was affected."
 Julie Robertson - When she sees photos of the others waiting for a transplant she feels “lucky” that she was not aware of her polycystic kidneys until she turned 55. She was able to retire and not have to push herself as hard as many others who have small children to raise or a job to hold down. “I am inspired by what you achieve” said Julie.
Four months ago, Julie began overnight Automated Peritoneal Dialysis (APD). Julie says that it is an excellent system and although it takes twelve hours, it gives her the flexibility to dialyse at home or even to travel. She can take her machine interstate on an airplane or pop it in the boot of the car when, for example, she goes off to babysit. Although often tired, Julie feel much better than she did pre-dialysis and is excited to be getting back to normal, having fun and even flying again. Julie is full of praise for her medical team – Dr Alan Parnham and nurses Vanessa, Lisa, Carol and Michele.
Phillip Rosenow - For a man who loves the great outdoors having total kidney failure presents a problem. Phillip Rosenow began dialysis when he was 36 and after four years he is still awaiting a transplant. Philip lives in rural Victoria and likes nothing more than to head out to the Australian bush to relax, but a dialysis commitment three times a week prevents this.
Not being able to go on holiday would be the biggest issue. I don’t go away to cities to take a break. I would like to be able to go out to the outback like I used to. Phillip’s friends still take off on their outback adventures and it’s at these times that Phillip really feels the impact of his condition. It’s a restriction and I have to just fit my life in around it, but I’d love to be able to get out there more. He says he often feels tired and lethargic and feels that he can’t do all of the physical activity that he was used to. He still goes to the gym and works out as much as possible, but needs to make sure that he doesn’t overdo it. Phillip hasn’t given up hope and is eagerly awaiting the call to tell him of a possible kidney for transplant. Sometimes the phone will ring and I’ll think ‘maybe this is it’ but mostly I try not to think about it.
Rocco Sant’Agostino - started dialysis in July 2005. He developed polycystic kidney disease 15 years ago but it was not diagnosed. He should have started a modified diet without salt but because, like many with kidney disease, he wasn’t aware of it, he continued living his life as he always had. During a routine blood test, his kidney failure was detected and he had to start dialysis immediately.
Now Rocco has dialysis three times per week, for four and half hours at a time. He says he prefers doing it at the hospital because he is afraid that at home he cannot always control his diet. Sometimes you want to eat something that you can’t, and if you do dialysis at home, you need to do it longer to solve the problem.”
Rocco loves eating and at the beginning he found it really hard following a diet. However, now he is used to it and his wife takes care of him, ensuring that he sticks to his diet. Rocco is waiting for a kidney transplant but he knows that it can be a long wait and it is not easy to find a compatible donor.
 Judanne Simpson (transplanted in 2006 for the second time) - views herself as lucky. Diagnosed with kidney disease when she was 18, by the age of 27 she was on dialysis. After only a year on the transplant waiting list Judanne received a kidney. She lived a relatively normal life until the age of 38 and then her body began to slowly reject the kidney until by the age of 48, when she was once again on the transplant waiting list. I think I’m very lucky, I have already been able to have all of that time with a kidney." Judanne was then having dialysis three times a week, which she said impacted upon her life because it really takes "a big bite out of the day".
It was a restriction on my time, but a terribly small complaint when you consider without it I could have no time at all. Despite her upbeat attitude Judanne admits that dialysis made it difficult to find and keep employment. She had to be very specific about the hours she could work and can’t commit to spontaneous overtime because of dialysis. She needed a job where she could finish by at least three o’clock each day so that I can get over to the hospital in time for my dialysis.
 Gerges Yassa - When you first meet Gerges Yassa you get a sense of peace and although he is always smiling, you can see in his eyes that he has endured a lot in his life. He first developed kidney disease 40 years ago and had an operation to remove one of his kidneys. Life went on as normal until in 1984, when he started to suffer from nausea, vomiting and felt very unwell. He had cramps during the night and was unable to sleep. After check-ups and blood tests, his doctor told Gerges that his remaining kidney had failed and he would have to begin dialysis. Upon hearing his diagnosis, Gerges felt like his life was “falling down”. Gerges’ wife was working and they had two children. He had an Indian take-away restaurant and although he loved his work, he found himself having to close earlier and earlier, and eventually give it up, as he was too sick to work long hours. He has been having dialysis for 14 years, first at home but he moved to St Vincents Dialysis Unit after suffering from a virus in his liver. He has dialysis three times a week and feels that it has a real impact on his life. He misses his job and playing sports (he used to play soccer, tennis and billiards). Gerges also misses holidays with his family. He still eats almost everything but knows that he has to be really careful. Now in his spare time, Gerges visits the social club and his relatives, and spends time with his family who take good care of him.
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