Guest Post – Vanessa Cullen
Before PKD Australia was launched I wondered if anyone in Australia was actually researching to find potential treatments and a cure for a reasonably rare disease. I wondered if people with PKD weren’t such an insignificant minority. It can be a lonely place to be when you have PKD.
Of course I was delighted when PKD Australia was formed with the intent to fund research and when I attended the launch to see the first round of grant recipients receive their funding. Upon seeing that multiple studies were underway, my next thought was to how I could join these studies as a volunteer and directly contribute to the fight to end PKD?
A conversation at the launch event with a nephrologist from Westmead Hospital, Dr Gopi Rangan, led to my receiving an invitation to undergo screening for eligibility in a research study investigating whether prescribed hydration (consumption of filtered water according to prescribed quantities) would have any impact on the disease and cyst size. This question has come about as a result of positive outcomes of Tolvaptan drug trials in people with PKD. The drug appears to slow progression of the disease however is it the drug itself that has the positive impact or is it the fact that the drug makes people drink and urinate large amounts of water? Which is the beneficial component … the drug or the side effect (the increased consumption of water)?
My screening kicked off with a visit to Westmead Hospital for an interview, blood test, weigh in and girth measurements. In the weeks since, I’ve been sent for an MRI to visualize and measure my cysts, a further blood test, and have had to spend a couple of days at home tracking my intake of fluids and weeing in a bottle (the things we do in the name of science!).
I don’t know yet whether I have made it into the study and whether into the control group or the test group. This has given me time to way up the pros and cons of participation in research studies and drug trials. On one hand you wonder whether your condition might be worsened by the prescriptions of the trial and whether you are putting yourself at risk. But on the other hand there’s every bit as much chance of improving your condition. Either way, by participating you are contributing to the fight against PKD in a meaningful way.
Even if a trial or study doesn’t work out, the medical fraternity will have learned from the research and participants will have gifted future generations. To volunteer for research is both in our own interests of finding a cure but also a selfless act.
I believe, to do our bit we need to live courageously, face this condition and join in the fight for our own lives. For what the Doctors learn today may well save us all tomorrow.