I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on March 16, 2009, 11:37:00 AM
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You survive on dialysis but after a transplant you live, says Janet
Mar 16 2009 by Madeleine Brindley, Western Mail
A hard-hitting television advert which depicts the life-or-death race hundreds of people in Wales face to find an organ donor was broadcast last week. Health Editor Madeleine Brindley spoke to two women about their experiences of organ donation as the Save Sian campaign was launched.
JANET EVANS started making up for lost time on November 25, 2007 – the date she received her second kidney transplant after spending the best part of a decade on dialysis.
Her first transplant, which followed two-and-a-half years of dialysis failed within eight months, forcing her onto the gruelling regime of haemodialysis for a further five years.
The 51-year-old is conscious that she hasn’t climbed a mountain or done anything “spectacular” after undergoing the transplant, but the new kidney has allowed her to restart her life and focus on caring for her family.
Janet, a former teacher, who lives in Neath, said: “It was a bit of a roller coaster in the beginning but now it’s wonderful and extremely precious.
“Just to be able to eat and drink like a normal person is absolutely wonderful.
“You survive on dialysis but you live after a transplant. Dialysis is about surviving and while I was on it, I was as well as anyone could be.
“But now I’m playing catch-up on the last 10 years.”
Janet’s kidneys failed in 1997 as a result of the disease lupus. She remembers little of her first transplant as she was so ill, but vividly recalls the impact of being on haemodialysis for five years while waiting for her second.
“When I was on dialysis I used to look forward to the sessions because then I could have a cup of tea while I was on the machine,” said the mother-of-two, who is organising a Kidney Wales Foundation Walk for Life in Aberavon on March 29.
“I was only allowed to have 500ml of fluid in total a day – that’s the size of a small bottle of water and includes fluids in food, such as gravy or sauces.
“It’s a very isolating way of life – as a family I used to enjoy sitting down and having a chat over a cup of tea, but while I was on dialysis I’d be parched.
“I’d have dialysis on a Friday and by Sunday the lunch would gag on me because I was so thirsty – weekends and holidays were the worst.
“I used to dread holidays sometimes, staring at a jug of chilled water in the middle of the table, knowing that I couldn’t have a drop. It was absolutely awful.
“But it didn’t only affect me – it affected my whole family.
“When it hit life was really good. I’d been married for five years, had two young children and was able to work as a teacher part-time. But all that came to an end.
“The consequences on the family were horrendous – it has a huge ripple effect.
“But since I’ve had the transplant I can do everything without help – there was a time when I couldn’t cook a meal for my family because I was ill all the time.
“I like to run my house and do everything I can for my family. I’m able to look after my mother, who is 87, because I don’t want her to have to go into a home.”
Sharon Edwards, a former athletics coach, from Penarth, is one of almost 500 people in Wales waiting for an organ transplant. The 34-year-old suffered kidney failure as a result of diabetes, which she was diagnosed with at the age of six. It is hoped that a combined kidney and pancreas transplant will improve her health dramatically.
Sharon said: “As soon as I’m on the list I have a bag packed and I’m ready to go – I’m just waiting for the phone to ring,” she said.
He fiance Bart Geere, 46, who she will marry in Penarth in June, added: “Sharon has been in this situation ever since I’ve known her so you take it on board as part of the package.
“But I look forward to the time when things will be better for Sharon – I see the way she deals with her health problems and I never fail to be quite gobsmacked by how she deals with it.
“God can do miracles but He needs people to co-operate and to help.”
For more information about the Save Sian campaign and to join the organ donor register, visit www.donatewales.org/savesian More details about Walk for Life are available at www.kidneywales.com
http://www.walesonline.co.uk/news/health-news/2009/03/16/you-survive-on-dialysis-but-after-a-transplant-you-live-says-janet-91466-23151280/
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“You survive on dialysis but you live after a transplant. Dialysis is about surviving and while I was on it, I was as well as anyone could be.
My Marvin would take exception to this statement. He's LIVING (and living a busy, productive, happy life) while on dialysis. Yes, he's waiting for a second transplant, but he's not waiting to LIVE until then. He's not just "surviving" on dialysis; he's flourishing on it.
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My hubby agrees with Marvin!!! He is living life to the fullest on dialysis. I fail to see how he would live any better with a transplant!! He just wouldn't have to hook up to a machine nighttime.
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As my quote at the bottom of this post reads, "Living a Life, not an apology."
8)
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See this why I do not read articles about transplants. How can they equate my life on dialysis with someone who has had a transplant? I get out and do things. I can vacation pretty much where I want to. I work full time. I am a contributing member of society even if I am on dialysis! Grumble grumble grumble.
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Everyone is different. Some people do well on dialysis, some do not. This story is one woman's perspective.
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Everyone has a different attitude about what "being on dialysis" means to him/her, too. Life is what you make of it.