‘To be dialysis free is better than winning the lottery’
In 2008 I became very ill with a rare autoimmune disease called microscopic polyangiitis vasculitis which caused severe kidney failure. In 2014 I was due to receive a living kidney donated by my husband, but was failed by my consultant and ended up not expecting to survive fighting for my life in hospital instead for four months. Thankfully on 4 July of this year (the first anniversary of my mother’s passing) my hero husband donated a wonderful kidney to me. There is no doubt he saved my life and to be dialysis free is better then winning the lottery.
Both our operations went fantastically and my only challenge was being 12 litres over with fluid (they pump you with fluid to keep the kidney working and alive) and the excess fluid leaked from my wound so I needed a Vac dressing and my right leg was terribly swollen. It is not an easy journey physically, mentally nor emotionally however one I would recommend to anyone lucky enough to be offered a kidney and a life again.
Jackie Bex, United Kingdom
‘The decision seemed easy: I had two kidneys and only needed one’
My experience in donating a kidney has been amazing and has left me with a great feeling of having actually achieved something life-changing. I had no idea that it was even possible to donate a non-directed living-kidney initially (in other words to someone I did not know), but I chose to become a kidney donor after watching a BBC documentary on the subject. I was also surprised that at the age of 63, I was not too old (donation is actually possible from age 18 and the oldest donor is over 80!). The decision seemed easy to me, as I had two kidneys and only needed one and the risk was totally minimal. Why not save a life?
My friends and family were very divided about the decision. Many people could not understand my motivation and felt the risk was unnecessary. Others completely appreciated my desire to do something practical and life-changing.
After the operation I was fortunate enough to receive a letter from the recipient of my kidney explaining how much it had changed her life. She had been on dialysis for many years, could not find employment, was unable to travel on holiday and relied on her parents. Now she is independent, has a job and can travel freely without the need for painful dialysis.
Chris Jones, a retired 67-year-old living in Scotland
‘We told each other how lucky we were. How wrong we were’
Not long after we were married my husband Keith discovered that he had kidney disease. I offered to be a donor and was successful, even though we were incompatible blood types and he required plasmapheresis to remove his antibodies.
In 2010, on the night we were supposed to be admitted to the transplant ward we sat huddled together. We told each other how lucky we were. How wrong we were. The surgery went well but afterwards in the recovery room, I found out that morphine has no affect on me and awoke feeling as if I had just been chopped in half. Eventually though, we both went home and started to plan the lives that we thought we had ahead of us. We celebrated my birthday and started to plan for Christmas. Keith was so unbelievably happy and grateful and had endless plans for all the things he thought he would now be able to do. But he seemed to continue to struggle.
One day he fainted twice. He was still under the care of the renal unit, going back twice a week for appointments there, so he phoned them for advice. They took hours to phone back and when they did, simply told him not to take his blood pressure medication in the morning. He didn’t live that long. The next morning, I found him dead on the hall carpet.
I regretted the surgery very bitterly as I felt – and still do – that if the transplant had never happened, my beloved husband would still be here. Life on dialysis would have been a very different kind of life – but it would still have been life.
Rebecca Farwell, a writer and tutor in Norwich
‘I became a doctor because of my transplant’
I was 21-years-old and had three weeks left to live. I had idiopathic hepatitis, was scared, helpless and questioning how I had ended up facing death at such a young age. I was so far from the young, seemingly arrogant and invincible boy I was a year previously. When only 10% of my liver was functional I was put on the transplant list as a final resort.
Before I became ill I had just graduated from the University of Sheffield. From the point I left home at 18 to go and live in Sheffield I thought I was fully independent, untouchable, and had everything in my life because of my actions and nobody else’s. I acted as though I would never need any kind of emotional support from anybody, especially my parents. Fighting to survive, they were all I wanted now.
As a GP my father struggled to cope. He was only too aware of the implications of each set of test results and took every deterioration in my health personally. Being a man that had healed and treated people for over 30 years I felt his helplessness knowing he couldn’t make his own son better.
Very few people get to have a second chance at life. My experience has made me realise how important the smallest things in life are; post-transplant, the most groundbreaking day for me was when I managed to get out of bed and walk to the toilet on a zimmerframe with my dad supporting me.
My decision to study medicine was a direct result of my hepatitis; I want to be one of those doctors that had the same life changing effect on me. I see no other profession in the world that compares to medicine and no one I have a greater respect for.
Marcus Mehta, a 29-year-old doctor from Lincoln
The day I received my new lung is my re-birthday
I was told I had idiopathic bronchiolitis obliterans and needed a lung transplant to save my life. 3 November 2014 was the day that I received the ultimate gift of life and my new lung was transplanted. This date is now my re-birthday and my family and I celebrate it every year with a quiet dinner. We also take a moment to raise our glasses to honor my donor and donor family who made that day possible.
Only eight days days after my transplant I was discharged and was allowed to go home. I felt like the luckiest person in the world. So far I have not had any rejection episodes and my new lung is doing great.
Catherine Horine, 61-years-old and living in the US
‘One man was able to have an extra 16 years with his family due to my father’s heart’
In 1988, my parents were struck by a train on their way to a local lake. My mother was killed on impact while my father survived the accident with a severe skull fracture and a collapsed lung. My father had surgery and the doctors removed his right temporal lobe. He never regained consciousness and remained in a coma until his death 10 days later.
About three days before his death, I was approached by the hospital staff about organ donation. Once we understood that my father’s prognosis was not going to improve and that the process of brain death had started to take his life, we agreed to the organ donation. The decision was easy for us. Once brain death was confirmed, they took my father in for the harvesting surgery. They ended up taking his kidneys, one cornea (the other had bacteria on it) and his heart. My father was in great shape and worked as a ski instructor. Despite being a smoker, his heart was in an excellent condition.
Afterwards, we were given the number of the local organ donation organization and told we could get vague updates on the recipients. We were able to find out the age, sex and state of the recipients and whether the surgery was successful. We received vague, non descriptive thank you notes from the families that received the kidneys and heart, but had no update on the cornea transplant.
17 years later, as part of a public speaking class on organ donation I contacted the company to see if my father’s recipients were alive and well. One of the kidney recipients had rejected his new kidney within a few short months but had received another kidney approximately a year later. Sadly, he passed away not long after. The other kidney recipient was still alive and well. She still had my father’s kidney. I was so pleased to hear this. Sadly, the heart recipient had passed 6 months prior to my call. I was told that he was gravely ill when he had the transplant and due to my father’s heart got an extra 16 years with his family.
Lynn, 48-years-old and living in Pennsylvania
"It"s better than winning the lottery": readers" organ donation stories
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