Pictured above: Marion Crudge, Claire O'Connell & Tim Goulding have all undergone organ transplants.
Organ Donor Awareness Week 2016, organised by the Irish Kidney Association, takes place this year from April 2 to 9. The focus of Organ Donor Awareness Week is to raise awareness about the ongoing and ever-increasing demand for organ transplantation, which relies on the public for organ donation. Its key message is that families need to talk and keep the reminders of their willingness to donate visible by carrying the organ donor card, downloading the Smartphone App and permitting Code 115 to be included on their driver’s license. Organ Donor Awareness Week also serves as a fundraising exercise for the Irish Kidney Association, as 74 per cent of its funds are generated from the public.
In 2015 there were a total of 266 organ transplants (including heart, lung, liver and kidney). Thanks to the generosity of 81 deceased donors and their families, 233 organ transplant operations were made possible last year and 232 lives were dramatically altered.
There are approximately 550 people in Ireland awaiting lifesaving heart, lung, liver, kidney and pancreas transplants. Thanks to the gift of organ donation, well over 3000 people in Ireland are enjoying extended life. St. Vincent’s Hospital conducted 61 liver transplants in 2015. The Mater Hospital conducted a record 36 lung transplants as well as 16 heart transplants in 2015 and Beaumont Hospital carried out 153 kidney transplants including 33 from living donors. Mary O’Brien meets three people in West Cork who have all undergone successful organ transplants. All three are sincerely and forever grateful to their donors and donors’ families who gave them the gift of life.
A life reborn
Ten years ago, on Good Friday, April 15, 2006, Marian Crudge from Skibbereen received her call to Beaumont hospital for a kidney transplant.
With end-stage kidney disease, Marian had spent three-and-half years on life-saving dialysis treatment before becoming an organ recipient.
She says that her kidney donor and his or her family, who remain anonymous, have been an intimate part of her life for the past 10 years and always will be. “Their tragic loss has provided me with a life reborn,” says Marian, who will be 62 in May. “The transformation is like night and day and the gratitude I feel is simply overwhelming.”
Marian was diagnosed with polycystic kidney disease at the age of 42, when the youngest of her five children was aged five. The congenital condition, which caused the death of her father and has also been inherited by other members of her family, causes numerous cysts to grow in the kidneys, making them both unable to filter out waste from the body.
“Like all loss and illness, kidney failure brought me face to face with death,” says Marian. “Memories of my father’s similar illness flooded back to haunt me. He died at age 49, after about one year of dialysis. The possibility of a transplant in the sixties was in its infancy until more sophisticated immunosuppressive medicines became available.”
At the time of her diagnosis, Marian felt fine, apart from a very deep sore ache in her left kidney and blood in the urine. “My symptoms disappeared after four or five days and recurred always in the month of November,” she says. Polysistic Kidney Disease was confirmed when an ultra sound scan showed multiple cysts on both kidneys.
“Sometimes one can remain perfectly healthy for many years or for a full lifetime. However, over the next five years my health slowly deteriorated and I had to close my garden nursery.”
After five years, Marian was diagnosed with end stage renal failure and given her options for dialysis. “It was like a bad dream in which I was faced with the choice ‘Die or dialysis?’ The devastation of my body, ‘letting me down’, as I saw it then, plunged me into a place of darkness, inertia and fear — the fear of dying”.
Finding the energy to do housework and take care of her young family was a constant struggle. Marian felt imprisoned by the tiredness and it got to a point where the high calcium and phosphate in her system caused pain and itch. She began dialysis in December 2001.
With the assistance and patience of the Renal Team at CUH, Marian learned to do a form of home dialysis called peritoneal dialysis. This involves running a fluid into the peritoneal cavity, through a tube called a Tenckhoff Catheter, and then out again, filtering waste from the blood.
“The prospect of wearing this catheter filled me with dread,” she says “but after the first six weeks, I became stronger and I felt more comfortable with the process of changing this fluid four times a day. Gradually I could move out and travel. It took half an hour to complete and it could be done on a park bench, in a friend’s house, in the car (though not while driving), on a train and so on. Even travelling abroad was possible. I was grateful that it helped to clean the blood, but it was like being pregnant — I had an extra two litres of life saving fluid inside my abdomen 24 hours a day.”
Marian joined the Irish Kidney Association (IKA) and got some wonderful support by way of counselling from a therapist in West Cork. “He was the first person to ask me ‘how do you feel?’ Nobody asks you that. I realised I felt constantly anxious and that I was hanging on to all this grief — grief for the loss of my father, the loss of my husband — and before I could deal with the grief and anxiety I was feeling at my own condition, I needed to face up to everything else. It also helped me come to terms with the fact that members of my family might have to face dialysis.”
“A lot of people go through this terrible trauma and never get help. It’s also really important to be able to chat to someone, in particular someone who has gone through it and can acknowledge how devastating and traumatic a situation organ failure is. The IKA is amazing and is always there to offer support,” says Marian, who is very grateful for the help and support she received from them.
After two-and-a-half years on the transplant waiting list, Marian was with her family when she got ‘the call’. “I was very sick at that point, so dehydrated, so tired all the time,” says Marian. “There was a point when I couldn’t even stand up to stir a pot. The relief when the call came, for me, my partner and children was incredible — we were crying, screaming and laughing all at once. I never actually thought it would happen.”
After four hours of surgery in Beaumont Hospital, Dublin, Marian emerged from theatre with her “beautiful new kidney”. It took several sessions of peritoneal dialysis to allow the new kidney function to start but slowly and surely the recovery began. “On day six after the transplant, I cried and cried in grief for the loss suffered by the family of my donor. I just felt so overwhelmed. Every single day, on returning home, I began to feel a little bit better. Six months was a huge turning point.”
Marian, who originally trained as a science and math teacher, and later in horticulture, returned to work at this point and started teaching horticulture part-time at a local college of further education. “It was my dream job, it made me feel alive and I could pay my bills again. Looking back I see it was very demanding of energy and my return to work possibly was premature,” says Marian. Recovery time differs for each case and people may have to adapt to a different career. Here again the IKA is helpful.
Today Marian is retired and loves nothing better than being outside with nature, gardening or walking her dogs.
“My recovery still continues in every way, physically, emotionally and mentally,” says Marian, whose health has been remarkably good since the transplant.
“Acknowledging that difficulties exist rather than dismissal and denial really helps. I learned to feel the feelings and become brutally honest with myself . This brings clarity and healing. The fear abates.”
Each day, as Marian takes the necessary medication, consisting of immunosupressants twice daily, she is reminded that the treatment continues. She stresses how important it is for everyone, especially younger people to carry a donor card. “The most necessary part is to start a discussion at home and make a family decision.”
“Thank you again to my wonderful donor and the donor’s family, to the brilliant surgeons, theatre staff, nurses and all hospital staff, the Renal Department in CUH, the IKA and of course above all to all my family, friends and neighbours for their help and understanding.”
At the heart of it
“Having the energy to talk or joke with people or tease my dad or enjoy a spur-of-the-moment coffee with my friends.” These are the things that Claire O’Connell now appreciates every single day of her life.
Claire, 35, from Clondrohoid near Macroom, had a heart transplant on March 20, 2015. Her wait for a new heart finally came to an end after she first went through the trauma of nine transplant calls, all of which, after assessment, turned out to be unsuitable organs.
Having successfully battling Hodgkin’s lymphoma cancer twice, first when she was 18 and then age 22, Claire developed cardiomyopathy, chronic disease of the heart muscle, five years ago. The condition causes the lungs and abdomen to regularly fill up with fluid and can lead to severe breathlessness. In July 2012, age 31, Claire was diagnosed with heart failure.
One of the treatments to help with the symptoms of cardiomyopathy is diuretics, a type of medicine used to get rid of any excess fluid in the body. Claire was limited to a fluid intake of 1.5 litres a day and, as a result of the treatment, had no saliva in her mouth. Swallowing and eating became a daily struggle. “It literally squeezes you dry,” she says.
By April 2014, Claire had reached severe heart failure stage and after assessment was placed on the heart transplant waiting list.
“The assessment process was all a bit surreal,” says Claire. “ You’re waiting to pass the tests that nobody else would want to pass — the tests that say you’re sick enough to need a new heart but well enough to have the operation!”
Claire’s liver wasn’t in great shape either because of the diuretic treatment, which makes your kidneys overactive, resulting in the liver having to work a lot harder than normal. My liver was in such bad shape that it looked like I had cirrhosis (chronic disease of the liver) on the scans,” says Claire. “Which would have meant I wasn’t a suitable candidate for a heart transplant.” It was only after a biopsy that it was determined that she had fibrosis, the first stage of liver scarring.
Suffering from repeated chest infections, pneumonia and exhausted all the time, Claire, a radiation therapist in Galway, had to eventually stop working in July 2014. “I wasn’t able to do much of anything, found it difficult to sleep and was continuously in and out of hospital. I was unable to live independently at that stage,” she explains.
By November, the diuretic treatment wasn’t working anymore. “By now I knew I really wasn’t well, I was in hospital more often than not.”
Pragmatic by nature, despite receiving nine transplant calls before her fateful organ ‘match’, Claire remained hopeful. “Of course I was disappointed, but I knew I had no control over it and there was no point in getting stressed, as that took energy, which was something I didn’t have. It was an effort for me to walk or even talk and took an hour-and-a-half just to get myself up and dressed every day. I knew death was just around the corner if I didn’t get a heart but I didn’t really fear death as such. I feared not living rather than dying.”
When Claire got that final call, she was in hospital. “I’d gone beyond the stage of getting excited about it,” she says. In a way, I had come to know by the tread of their footsteps and look on their faces when it was going to be a ‘no match’.” When the nurse walked in to her room and said it was a ‘maybe’, as the antibodies matched, Claire dared to hope. “When she came back and said it was a ‘yes’, I think I actually jumped up and down, even though I probably only moved about a millimetre off the ground,” says Claire laughing. “It all went very quickly after that. The last thing I remember is handing over my glasses to mam and dad.”
Kept under sedation post-transplant to aid her recovery, Claire can’t remember anything prior to five weeks afterwards.
“It was all a bit surreal afterwards, I was on a lot of morphine and I remember thinking ‘I thought this thing was supposed to make me feel better, not worse’.”
After eight weeks, Claire was well enough to be allowed home from hospital.
“I felt very strange for a while after and didn’t refer to it as ‘my heart’ for a long time. I suppose I had conflicting emotions, immense gratitude to my donor but also guilt that I had benefitted from someone else’s death.”
Today, Claire is appreciative of the simple pleasures in life. “Things are much more in perspective for me now. I can walk, laugh, talk, play with my nieces, go to the cinema. I’d like to get back to my routine, get back to work and hopefully travel. I’d love to visit Italy and one day perhaps I’ll make it to see Machu Picchu in Peru.”
Claire urges people to carry around an organ donor card. “A lot of people wouldn’t be alive today without organ donors. Irish people are great at dying but rubbish at talking about death. It will happen some time, so I’d urge you to talk about it and let your family know if you’d like to be a donor.”
“I don’t live life, life lives me”
After a year’s hiatus due to ill-health, artist Tim Goulding has started painting again. But now everything is different. Almost four months ago, Tim, age 70, became a liver recipient, a life-changing experience that he says “wiped the slate clean” for him.
“Any theories I’ve ever had about spirituality, philosophies, approaches to life, things you’d normally hold on to, were just wiped away with the transplant,” he says. “It’s difficult to explain and I know it sounds strange, but I think I’m less of a person, or at least, less wedded to the idea of the person or personality I was.”
“It’s the most overwhelming thing to be given a new life. A year ago, I thought I mightn’t live another year. And now to be given this incredible gift…there isn’t a day that I don’t think of the donor and donor’s family and feel gratitude.”
The painter, poet and musician, who has lived in Allihies on the Beara peninsula since 1968, has such a positive outlook on life that even the shake in his hands and clumsiness caused by the immunosuppressant drugs he’s now on (medicines that lower the body’s ability to reject a transplanted organ), don’t cause him undue distress. “I’m thinking now that I’ll have to accommodate this, change my style, maybe do a few Jackson Pollock’s,” he says laughing softly. “It might be an exciting new chapter, this new Tim Goulding.”
On a more serious note Tim explains, “I feel that I’ve been given something so precious that I should make the very best of it. If you value life, the greatest thanks you can give, is to become a donor. Life can turn on a dime and your generosity might save another’s life.”
Tim’s liver failure was caused by Hepatitis C, which he contracted in 1983 from his partner at-the-time. “I’ve been terrified of needles all my life and would never touch drugs but Hepatitis C still has such a stigma surrounding it, almost on a level with AIDS, that when you mention it, people immediately think of alcohol or drugs,” says Tim.
The Hepatitis C virus was only discovered in 1989, the year Tim was diagnosed. Prior to that, it was associated with blood transfusions, but was called non-A, non-B hepatitis because the virus could not be identified.
Transmitted by contact with blood of an infected person, many people do not realise they have been infected with the Hepatitis C virus, as they may not have any symptoms.
Some people with Hepatitis C will fight the infection completely off, some will remain well and never develop liver damage but many will develop mild to moderate liver damage (with or without symptoms).
Unfortunately for the unlucky few, their liver damage will progress to cirrhosis (severe scarring of the liver) over 20-30 years, which can, as in Tim’s case, lead to liver failure, where the only option is a transplant.
In May 2015, after trying out a new treatment, Tim’s health severely deteriorated and he became an active liver transplant candidate; his name was placed on a waiting list.
At the time, Tim had suffered hepatic encephalopathy, a loss of brain function that occurs when the liver is unable to remove toxins from the blood. “I became completely confused and spent two months in hospital after the treatment,” he says.
“I had really started feeling the disease in the last 20 years, particularly in the last 10,” says Tim. “I suffered from extreme lethargy at times.” But it was from May last year that Tim’s health started going downhill with frightening speed. “I couldn’t paint or play any gigs or do much of anything.”
Tim is a member of the well-known band Dr Strangely Strange, an experimental Irish folk group, which formed in 1967 and successfully regrouped in recent years.
“I had to be well enough to have the operation but sick enough to warrant it…I was just surviving,” explains Tim.
For someone who has always loved and lived life to the full, this was a very difficult period that Tim got through with the support of his wife Georgina, family and friends.
He was at his good friend Dessie’s house when he got the call for transplant last November. “Dessie underwent a kidney transplant the year before and I had driven him up to Dublin at three in the morning,” says Tim. “After I got the call, he made sandwiches, reassured Georgina and gave me a big hug. As we got into the car, he wished me luck and I remember him saying ‘by God you’re going to need it’. Dessie had been through it and knew what was ahead of us. He’s been of huge support to me.”
After the operation, Tim says that the pain was so bad the first week that he found it almost unbearable. “I could never have imagined how terrible the physical suffering was going to be,” he says.
“My admiration for the medical profession shot through the roof in the three weeks that I spent in St Vincent’s after the transplant. There’s something in you that senses the atmosphere of someone rather than their words and when you’re sick in hospital you really sense that from the people caring for you. The positivity, caring and expertise of the nurses was amazing…it’s what got me through the pain. And the same must be said for the Hepatology Unit in Cork University Hospital, which I have attended for many years. Dr Orla Crosbie and her team have become almost family.”
The psychological journey however is what made the biggest impression on Tim. “There was no room for anything outside of the pain and in one way, it was a great lesson to be absolutely wiped clean. I’m at my best when I have no theories about anything and just respond to the moment. If your worst enemy was out on the street and lying under a car, you forget all your theories about that person and you naturally just try and help them.
“When death is sitting on your shoulder, a lot of quite profound observations about life and living and death come through. The nature of man is to try to understand and that came back after the pain eased.”
Tim says that his motto in life has become ‘don’t take it personally’. “The experience makes you a more honest person and you stop caring about what other people think. It would be very hard for me to be insulted now. I’m a different person for going through this.
“I don’t live life, life lives me.”
Letting life live him on the edge of the world in Beara, Tim has never run out of inspiration. “When I came here first I met an old man who lived up the mountain and he said that this is the last place God made and he took his tools with him…and it’s that quality to the land that I love. Some people find it really scary or barren. But a lot of the beauty of this place, apart from being in its vastness, is its minuteness…it is unspoilt here in a way.
“Beara offers a wonderful palette. Outside of that I love the sense of humour of the people down here. I love the sense of community, which was emphasised by the massive support that Georgina and I received in the last year. I feel very at ease in Beara even though I’m still obviously a blow-in, in terms of culture. But I feel I fit in here, I have my place here.
“There are lots of things I’d still love to do and be inspired to do, certainly in painting, music and writing…I work in series and see painting as a diary. “For all of us, life is changing every single day”