A BLACK Isle woman on the transplant list after her busy life came to a standstill when she was struck down with kidney disease is urging people to consider signing up to be live donors.
Mairi Macleod from Tore has battled the cruel condition for four years and now also wants to encourage the public not to ignore its early symptoms, in a bid to avoid more dialysis and transplants.
Five members of the 57-year-old’s family have already been ruled out as live donors and she has been told her chances of receiving a new kidney on the transplant waiting list are very slim and could take from five to 10 years, due to her high antibodies.
Mrs Macleod has recently started on dialysis at home, and her best hope of a transplant to improve her long-term quality of life has been provided by her sister Jimina.
She has agreed to partner her on a paired exchange – a database of couples made up of donors and would-be transplant patients that is checked four times a year.
There is also a possibility that a stranger could also be matched as an altruistic live donor, and Mrs Macleod is urging anyone who thinks “I want to get tested for Mairi” to contact the transplant liaison nurse at Raigmore Hospital.
Mrs Macleod decided to speak publicly to tie in with World Kidney Day, held last Thursday, because she believes her illness is lagging behind in terms of public awareness, despite the fact that 250 people died last year while waiting for a transplant.
The mother-of-four, who has six grandchildren and is originally from Lewis, said: “People have told me that I don’t look ill, but they don’t see the battle I go through just to get up and the vomiting I suffer every single day.
“This is a potentially fatal disease and that is the message we have got to get out there, and for people to consider registering as donors as there are 5200 people on the list at the moment.
“Quite a few people crash land into ITU with very low kidney function. If people notice swelling in the ankles or fingers that they don’t know a cause for, if they feel tired and listless, if their arms or legs feel weak and they start getting nausea or vomiting for no apparent reason, they should get blood tested.”
Mrs Macleod, a self-employed nurse, first went to the doctor at 52 thinking her symptoms were down to the menopause, but after 10 months on hormone replacement therapy they came back stronger. A routine blood check found her kidney function had dropped from normal to 28 per cent.
At the start of 2013 she was diagnosed with mesangiocapillary glomerulonephritis, as well as lupus, and was put on “heavy duty” medication.
“I was loving life and had it planned out for the next five years, my business was moving forward and my family was expanding,” she said.
“All that changed overnight with the diagnosis – not just for me but for my husband Ian and my children, it was cruel really. It was like I was put in this black hole and it was covered over. I came to a standstill and didn’t know what my future was going to be.
“When I came to terms with it, my battle then was to find a cure, and I started trawling the internet and quickly realised there was no cure. Really I just have to try to get on with it and live my life as best I can.”
Mrs Macleod feared dialysis because she watched her mother on it, but after speaking to others on the treatment, she changed her mind.
“I started to come round to it and then more grandchildren started appearing – I have had four grandsons since my diagnosis and that is something for me to live for,” she said.
In January last year she went on the transplant list and started peritoneal dialysis at home through the night.
She has to cope with extreme fatigue, weakness in the limbs and body, nausea and severe vomiting, as well as side effects and being prone to bugs that left her hospitalised five times in the first year.
A friend has recently started the process of attempting to be her live donor. Mrs Macleod is currently suspended off the transplant list because of a planned hip replacement in May as a result of osteoarthritis, but will go back on it six weeks later.
“When I first went active on the list every time the phone rang I jumped thinking ‘this is it’, and I picked it up and it was just a sales call. I try not to think about it now,” she said.
Raigmore Hospital’s transplant liaison service can be contacted on 01463 706689.