Vivian

Vivian

My name is Vivian and my husband Jose was diagnosed with End Stage 5 Renal Failure on October 13, 2017 just as we were beginning to recover from Hurricane Maria and its path of destruction through our home in Puerto Rico.

At the time, I had just arrived in Florida with our two children on a humanitarian boat in order to take a breather and give the kids a break from the craziness that came after the hurricane. Little did we know that a week later our lives would change forever.

Jose's diagnosis took us by surprise. There were no obvious signs until it was too late. Medical services were limited on the island so getting him stable and out to the mainland was our primary goal and quite a challenge. After many telephone calls and reaching out to every contact we knew flying out of the island, we were blessed to get on a plane and have medical arrangements waiting for us at the local hospital. We spent three long weeks at the hospital getting him treated and stable.

As I met his medical team and spoke to friends and family, the more questions I had. I started doing my own research because I needed to read and educate myself on the impact this would have on all our lives.

I am an eternal planner, so I needed to know what to expect. Realizing that his condition could've been somewhat preventable or at least stalled by changing (his) our lifestyle, eating habits, medical follow ups etc., was my biggest surprise. The more I read and spoke to others, the more I realized how little information (in your face type of information) is our there, especially in our community with 11% of newly diagnosed kidney disease patients being Hispanic.

So why not GET LOUD?! Not only to help find a future transplant match for my husband but to be heard by others. If we can help just one person, then we've accomplished our goal.

Our lives are so involved with day to day activities ranging from work to parenting that we forget that the key to living is good health. As a society, we have been trained to think that as long as we feel good (physically) then we are not ill. Well, let me tell you, that is so so wrong!

Awareness creates change and we need to listen to our bodies, be aware of its changes and take care of it. After all, we only have one shot at this thing called life.

As we grow, learn and navigate through this process, we have created a Bi-lingual Facebook Blog called Swing for the Fences, My Life Journey and Kidney Quest, where we share our day to day experiences. From the hardest moments to the silliness of life on dialysis, information regarding prevention of kidney disease, becoming a kidney donor and news articles about kidney disease.

Location: Puerto Rico/Florida

Robyn

Robyn