Thursday 4th September has been declared Polycystic Kidney
Awareness Day by the PKD Foundation. My wife suffers from PKD, and since I love
her it seems only right to stand on my own particular soap box and spread the
word.
Before I met her I had never heard of this disease, and even
after we were married it was in the background of our life. I knew she had a condition
that was going to affect her health in years to come, but the effects at first
were slight. She doesn’t smoke which is a plus, she doesn’t drink which isn’t
an issue, and she exercises religiously which just shows me up. I’m sure PKD
helped motivate these life choices, as well as her insistence on healthy
eating, but she’d have done them anyway because she’s far wiser than me.
PKD is accurately if unimaginatively named. It is an
inherited disease in which fluid filled cysts multiply and grow in the kidneys.
Some people live their whole lives without knowing they have it, but in most
cases kidney functions steadily decline, eventually resulting in kidney
failure.
My wife and I have grown older together, which was the plan
of course, and each year has been marked by regular visits to the kidney
specialist. Each time there is a percentage rating of how the kidneys were
doing. Sometimes it stayed the same, occasionally it crept up, but overall
there has been a downward trend. The visits to the specialists have now become
more frequent.
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| A Polycystic kidney alongside a healthy kidney |
The horrible irony of PKD is that while kidney function
decreases, the organs get bigger. The cysts swell and multiply, pushing the
kidneys out into the rest of the body. Often the liver is affected too and develops
its own cysts, growing along with the kidneys. Space is taken up, other organs
are squashed, and the torso gets larger. In later stages this becomes
noticeable whatever you are wearing. As you can imagine all of this is uncomfortable,
painful and distressing.
As the disease has progressed life has become less enjoyable
for my wife. She has needed stronger medication to control her blood pressure, with each new prescription bringing its own side effects. Sleep has become
difficult due to continual discomfort. Eating is a cost/benefit exercise, searching
through the rapidly shrinking menu of foods that are allowed to her, trying to
find something that won’t lead to griping pain afterwards. Even the quantity is
a trade off. Her constricted stomach can’t handle more than a child’s portion
but she needs enough to stop her becoming malnourished. When we got together it
was a joy to have a wife who loved to walk as much as I did, but now her
shortness of breath means a walk across the park is the limit.
There is no cure for PKD, at least not yet, but that doesn’t
mean that there’s nothing that can be done. Good diet, exercise and controlling
blood pressure etc. all help. However there comes a point where the organs will
fail. Dialysis is one option, and organ transplant is another. A healthy kidney
or liver when transplanted into a PKD sufferer does not start to grow cysts.
They behave as they would do in any other patient. They do not last forever,
current estimates are about 15 years in the UK but increasing all the time, and
demand outstrips supply. Doctors and sufferers almost have to play ‘chicken’
with PKD. Transplant too early and you’ll be looking at another transplant 15
to 20 years down the road, as well as perhaps denying someone in greater need.
Wait too long and you may be too weak when your chance comes.
My wife has done well but we are now into discussions with
specialists about dialysis and transplant registers. Everyone agrees that we
are reaching the point where something must be done, what that is remains to be
decided.
This is an account of my experience of living with someone
with PKD in which I hope to raise awareness of the condition. Other sufferers
will have completely different stories to tell. For more stories, support,
information and donation channels then please use the relevant link from the
list below.
International www.pkdinternational.org
USA www.pkdcure.org
Canada endpkd.ca
France www.polykystose.org
Germany www.pkdcure.de
Italy www.renepolicistico.it
Japan www.pkdfcj.org
There is just one more thing. Please register as an organ
donor. When you’ve gone you won’t miss your internal bits and pieces. They can
become food for worms, fuel for the fire, or life for someone else. Thanks.
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