What I would say to somebody whose loved one was just diagnosed with PKD is to, first and foremost, make sure to educate yourself about this diagnosis and to understand how it’s going to progress over time and what your options are down the road.  Also, make sure that they’re followed closely by their PCP.  The big things they’ll want to do is watch their blood pressure, drink a lot of water and try to maintain as healthy a lifestyle as possible.

We as a family have always tried to support John in trying to maintain the same lifestyle that he needs to keep his kidneys healthy and has needed all along to keep his kidneys healthy including trying to have a lower protein diet, less salt, everybody drinking a lot of water and just trying to remain active and healthy.  And then after the transplant, his immune system is a little more compromised so we do our best to try to stay healthy, we do a lot more hand washing and hand sanitizing and just trying to keep ourselves as healthy as possible, try to bring less disease into our household. If we as a family can all participate in that together, it helps benefit him and all of us.

My 15-year-old daughter decided this year that she wanted to grow a vegetable garden so we are members of the community garden, a mile away, so every morning some or all of us walk to the garden, water it, clip the vegetables and eat the fresh vegetables every day. All of our daughters are in sports so we try to go out and practice with them, we don’t go running with my oldest daughter, but we’ll go for walks, family bike rides on the canal, just try to all stay as active as possible together.