#fightwinprevail: Kidney disease awareness - behind the scenes

With World Kidney Day just passing on the 8th of March, I asked someone very important in my life to reflect on the importance of Kidney disease awareness and to share his story so we can be more aware of this disease and the importance of being an organ donor and who you could help. This is his story and the impact it’s had not just on him but, his beautiful daughter and family.

 Source: Pexel

Source: Pexel

March 8th is World Kidney Day, and I’ve found myself reflecting on the massive portion of my life that my kidney function (or lack thereof) has played. It’s kind of tough, as kidney disease has been part of my life for as long as I can remember, it is part of my life, and I’ve not really regarded my experiences as overwhelmingly special or unique.

Kidneys are the quiet achievers in our bodies, ticking along in the background and performing a phenomenal number of vital roles:

-       regulation of blood pressure and blood volume

-       production of red blood cells

-       synthesis of Vitamin D

-       supporting your immune system AND

-       excreting waste products.

When your kidneys aren’t performing these tasks the way they should - we know about it pretty damn quickly. Not much is understood by the average person about kidneys - not like your flashier organs, (hello, liver, lungs and heart) but most people have at least heard of kidney transplantation. When kidney disease strikes and cause complete renal failure, there is a range of drugs and treatments designed to hold the symptoms off for as long as possible, and ultimately a patient might be fortunate enough to receive a transplant. It’s incredibly important to note that this isn’t a cure. There is no cure. Transplantation is a miracle, it’s amazing, it’s the best treatment we have - but it is not a cure.

My story starts when I was diagnosed in 1982 at the age of seven with Nephrotic Syndrome caused by Focal Segmental Glomerulosclerosis (FSGS). My kidneys were failing, and as a result, I was fatigued and retained fluid around my body and generally felt unwell. I was admitted to the Royal Alexandra Hospital in Camperdown, Sydney where I was put on dialysis to help clean my blood by removing toxins where my kidneys could not, and started taking a series of medications to treat other symptoms.

Anyone who has ever had a child, known a child or indeed been a child will know how hard it would have been for my parents to get all these drugs into me on a daily basis. In the meantime, my mother was tested to become a donor, and happily, she was a match. In the February of 1983 my mother and I underwent the complex surgeries and I received a healthy and functioning kidney. My mother’s selflessness ensured that I was able to live a happy, normal and relatively healthy childhood and adolescence.

As I headed into my twenties, my health began to decline again, with increased respiratory infections, migraines, and lethargy - all indicating that my transplanted kidney was now reaching the end of its functioning life. The treatments designed to hold off rejection could only last so long, and my only option was a second transplant. I was incredibly fortunate that my father was able to donate to me, and so in 2003 we went through the surgeries to give me my second successful transplant.

Now however, I was newly married and wanted to start a family with my wife. Not knowing what caused my kidney disease in my childhood prompted us to seek genetic counselling at Royal Prince Alfred Hospital as we did not want to risk passing this on to our children. At this stage, the geneticist explained to us, they did not have any specific gene markers isolated that I could be tested for but suggested that based on our combined medical histories we did not necessarily stand more or less of a chance for this disease to rear its ugly head again. In short, anyone’s kidney could fail at any stage in life, for a multitude of reasons.

YOLO.

We were delighted to welcome our first child in 2006 and a second in 2009, both healthy and developing as normal - a relief to us both as we focused on the day-to-day minutiae of life. But, as Hank Scorpio so wisely said, “You can’t argue with the little things. It’s the little things that make up life”.

But as life progressed, I found myself to be missing out more and more of the little things with my family. During 2010 I began to become more and more susceptible to infections, especially in my chest. I had numerous bouts of pneumonia and bronchitis, landing me in intensive care at least once. Gastric complaints that resulted in doctors seriously considering plugs of some description meant I was having trouble retaining weight and nutrients from food. My appetite weakened, and my immune system struggled to keep up. Eventually, a mystery infection in early  2017 caused acute sepsis and on waking after four days unconscious in intensive care, I was frightened to learn that my doctors had been forced to choose between my kidney and my life.

Over the course of the following six months I underwent haemodialysis three days a week connected to a machine that we started to affectionately refer to as a ‘Dalek’ (my wife is a geek; I had no choice in the matter) and then transferred over to peritoneal dialysis, which allowed me to be treated at home. This is where we are now. I have been on peritoneal dialysis for almost a year, and this is where our story ends…..

….or so I thought. Life has a habit of throwing curve balls. Just when I thought we had adjusted to the new ‘normal’ in our lives, the universe decided to kick us all in the guts.

Late last year 2017 my daughter started showing symptoms of fluid retention in her face, then in her little tummy and ankles. After a trip to the local GP - she was also diagnosed with FSGS. My cursed disease was handed down to her. She is now battling hard against it, but is losing the battle. This disease is very aggressive, and in a matter of months she has now reached end-stage renal failure and is getting prepped for dialysis. We’re hoping that she will also be fortunate enough to receive the gift of a successful transplant and will be able to resume her life in relative normality, but we’re very aware that even with the significant advances in medical science over the last thirty years - this is a life sentence for her.

Kidney disease is a son of a bitch. It can hit anyone. It doesn't’ discriminate. It doesn’t care if you’re rich or poor, male or female or if you are an adult or child. If you’re reading this, and you haven’t registered to be an organ donor, I beseech you to now do so. This story could be so easily your spouse, your sibling, your parent or your child. This selfless gift changes lives of not only for the patient but also for their families.

To find out more about kidney disease and become aware of the options of becoming an organ donor see below.

http://kidney.org.au/

https://register.donatelife.gov.au/


 Restless in Pursuit| Kidney disease Awareness

Hi I’m Peter. I’m 42 and a father of two. Our family of four consists of my daughter and myself living with different stages of chronic illness. I have been on dialysis for nearly a year and my daughter is in end stage kidney failure. “Living chronically” has been our mantra for many years!


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