Hello all, I am new to this support group but my family has been dealing with PKD (polycystic Kidney disease) for generations. Mother, aunts, sister, bothers and even my children were diagonised already. We are thankful for all the research and clinical trails that the medical community has been working on. We have seen how this disease is similar and different at times for us all. At this time we are all at different levels of kidney function and pain levels. Our family functions are sometimes more of a PKD forum on updates. For myself, I knew at 16 years old I had the disease and I lived a full life. Now 40 years later my kidney function has been under 15% for many years but then the overwhemling fatigue took its toll and I went on dialysis only recently. Hopeful for a transplant soon.
My advice to anyone - Be as healthy as you can be. Find the best nephrologist you can find that is familiar with PKD. Maintain a good blood pressure. ( Note: high Blood pressue & multiple pregnacies for women may cause faster cyst growth) Avoid heavy lifting or strain to kidneys.
Good luck to all
Hi everyone. My nephrologist has just prescribed me Tolvaptan. I know there were positive results from the trial but the lifestyle change in terms of drinking more water and going to the toilet scares me. How are you finding it, if you are taking Tolvaptan? Does anyone take it ever have the odd glass of wine or coffee?I would be keen to know and receive your support
Hi Guys - not sure if you have read this before, but have posted about this on this forum earlier.The Artifical Kidney Project is all set to get into clinical in human trials early 2018! if all goes according to plan the device can be launched as early as 2020.I know this information is a big ray of hope for me. Initially, I didn't want to pin my hopes up on this project to be disappointed but...