Guest Post by Jenni Miller
I first heard of PKD in early 2003 when I met my father-in-law, Peter. He was on a dialysis machine set up in the study of their family home. My husband Damian skimmed over the details of PKD with me that evening, explaining that neither he nor his brother David could donate a kidney to their Dad as they both also had the disease.
Peter passed away later that year – at only 50 years old. It was a huge wake up call and the catalyst for Damien to start thinking more seriously about his future. We married in 2005 and had our first child Ajay later that year.
Damian’s nephrologist appointments were generally uneventful as his kidney function and blood pressure were within a “healthy range” and his specialist said he wouldn’t have to worry about dialysis until later in life. Then in late 2006 Damian took a knee to one of his kidneys in a basketball match and that evening saw blood in his urine. He spent a week in hospital and it was then that we found out his kidney function had declined quite dramatically.
Damian started dialysis in June 2007, working full-time as a Plumber to support our family and spending three nights every week at a dialysis unit. Monash University then decided to perform an ABO incompatible transplant – the first one ever performed at Melbourne’s Monash hospital and so ground breaking that we were featured in The Herald Sun.
Damien’s transplant was successfully carried out in November 2007 and in April 2008 we welcomed our second son, Beau.
Fast forward to August 2014, I was giving Beau a massage when I noticed a bulge on the left side of his abdomen. I had always had a feeling about his ‘toddler pot belly’ as it hadn’t disappeared, but was encouraged by friends and family that it was nothing to worry about.
We made an appointment for Beau the next day and after the Dr explained he had an enlarged spleen, he was rushed to have an ultrasound that afternoon. Enlarged spleens are not a typical symptom of PKD, however during the ultrasound the sonographer noticed cysts on both of Beau’s kidneys. We were devastated! However, there was more urgent concerns … and a few weeks later Beau had surgery to confirm that he had Congenital hepatic fibrosis of the Liver. CHF of the liver is something that has shown up in individuals with ARPKD but not so commonly in ADPKD.
Beau’s Renal specialist confirmed due to the ultrasound and Damian’s family history that Beau had ADPKD. In time, due to the fact that these diseases have no treatment or cure, Beau will probably need a liver and kidney transplant. We haven’t taken these words as definite – nothing in life is for certain.
We also had an ultrasound done on Ajay (our eldest son) and fortunately, his kidneys are clear of cysts and there is no sign of liver disease for now.
We work hard to keep our family healthy, by making sure both Ajay and Beau drink plenty of water and eat mostly wholefoods. Beau is a vibrant and cheeky boy and we have chosen not to let his condition define him – although we do encourage him to steer away from contact sports. Lucky for us he isn’t that competitive and most sports don’t appeal to him anyway!
I keep myself healthy emotionally and physically in the hope I can donate one of my kidneys and a piece of my liver to Beau. Damian also has regular post – transplant appointments and his kidney function is still good.
It’s been a stressful few years and we are a stronger family because of it. We have all learned just how precious life is and we try not to take anything for granted. We make it a priority to play and laugh and enjoy the little things.
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