Page 6 - NKF-KL-issue-14-Autumn-2016-for-web

My new kidney; a gift to me from an altruistic donor

I was born with a rare genetic kidney disease called Alport’s

syndrome. Alport’s syndrome affects approximately 2000 people
in the UK. It damages the membrane in the kidney, ears and
sometimes the eyes, causing kidney failure, deafness and sight
issues.

My kidneys first failed when I was 24 when I had pancreatitis. I lived
with stage 4 kidney failure for 18 years. But in December 2013 my
kidney function dropped further due to a particularly stressful time in
my life, and I was told I needed dialysis and a transplant.
I started home peritoneal dialysis in March 2014 and then
haemodialysis the following year in August.

Part three of our series on altruistic donation has to culminate in
the successful transplantation of an altruistically donated kidney.

Coincidentally, Karen Kanee had been in touch with the Kidney
Life office to offer us her perspective on dialysis, when she was

unexpectedly contacted by her local transplant coordinator who let Karen Kanee
her know that an altruistic donor had offered one of their kidneys

for transplantation – and Karen was the best match on the National Note from the editor:
Alport’s syndrome
Transplant Database - a fitting end to a fascinating journey through (For more information please go
the process of altruistic kidney donation, and a tribute to all those to www.kidney.org.uk and search
for Alport’s syndrome)
kind people who so selflessly offer one of their kidneys to a complete Alport’s syndrome is caused by
an abnormality in the collagen.
stranger in this way. Collagen is a ‘building block’,
giving parts of the body not
supported by bone their shape
In March this year, after having been on the transplant list for 2 years and strength. There is one
particular type of collagen found
and 1 month I got a phone call, whilst on dialysis, from the transplant
mostly in the kidney and the ear,
coordinator. “We have a perfectly matched kidney for you from and this is affected in Alport’s
an anonymous altruistic donor”, she told me. I had never heard of syndrome, leading to kidney
this method of organ donation. I had heard of friends and relatives failure and partial deafness.
Women with Alport’s syndrome
donating to patients and the pooled scheme but not someone coming are able to produce more normal
forward to donate a kidney to someone they did not know who was on collagen than men, and usually
the transplant waiting list. have mild disease. However they
can pass Alport’s syndrome with
The Coordinator explained that I needed to come the following week kidney failure to their sons.
to see the surgeon and to have blood tests done to ensure this kidney
would be a good match. The results of these were all fine and on the
23 March I was admitted to Sheffield Northern General Hospital. The “I have energy for the
operation was planned for the next day and it would take place after
1.00pm. I had dialysis that evening for the last time. I held back on first time since I was 24.
my excitement until I knew that the kidney had actually arrived in the I have no restless legs or
hospital. Once it had actually arrived this meant the transplant could
take place. I woke up in recovery and immediately asked if the kidney leg cramps. My eczema
was working - and it was! has cleared up and my
My kidney function started to improve immediately as all the toxins skin is not dry any more.”
were being removed from my blood. However on day 4 my body

6 Autumn 2016 www.kidney.org.uk HELPLINE 0845 601 02 09