CHRONIC KIDNEY DISEASE

Life After Diagnosis

People who have chronic kidney disease, CKD, can live full, meaningful and purposeful lives. I do. Believe me, if I can, you can, too.

It’s not easy. It takes deciding to live, hard work, willingness to change, self-education and lots of support – especially during those times when all you want to do is give up and give in.

I’ve been in that well of despair more times than I care to remember. But I didn’t give up. Somehow, I discovered strength I didn’t know I had and the support I needed to keep on fighting.

In the process, I found a new meaning and purpose for my life that keeps me on track and looking forward to each new day.

My purpose - my mission - is to help my fellow CKD patients live satisfying and productive lives, to educate myself and others and to improve the level of care. I’m proud to be a member of the CKD community. I salute my fellow warriors. Thank you for being committed to helping one another and making a difference.

I promise you that you can live a productive and full life after your chronic kidney disease diagnosis. I assure you that we all have more inner strength than we ever thought possible. We are creating a strong community and forming powerful alliances. We are tough. We are warriors. Together, we can improve treatment, education and resources.

I know it sounds crazy that there was so little useful information back then. Especially considering that we’re constantly bombarded by information now.

But this was 1996. Netscape, the first user friendly browser had just gone public in August 1995. Netscape was the first full color, point-and-click browser available to the public. The internet was still in its public infancy and there was limited information on it for kidney disease patients anyway.

Fast forward to 2019. The internet is in full bloom and still expanding. Patient-centered information is more available and many of us have easy access to it. There are support organizations that exist solely to educate the public about kidney disease, raise money for research, and provide assistance for those of us who have kidney disease and support to our caregivers, families and friends. Worldwide social media sites help us stay connected and informed – and take action.

There have been remarkable advances in equipment and treatment from artificial kidneys and wearable kidneys to stem cell therapy and new dialysis techniques and machines. There are new mechanisms to help patients cope with the pain, anxiety, depression, loss of appetite and other discomforts of kidney disease that include medical cannabis, mindfulness meditation and a search for faith. The medical model is being challenged.

Why then should I bother to write this book?

First, because the information is still all over the place. And some of it is just plain wrong. This is not a medical manuscript. I’m not a healthcare professional. I’m a chronic kidney disease patient sharing what I’ve learned and experienced with other kidney disease patients and the people who care about us. I’m grateful for and inspired by the remarkable people who graciously agreed to share their personal stories with us. I see myself in their accounts. I marvel at their courage.

I was only 26 when I was told that both my kidneys had failed and I needed immediate dialysis to stay alive. I was devastated.

Everything changed from that moment on. Not all at once. Some changes took days. Others took years. Some are still in process. I’m willing to bet that anyone who finds out they have a chronic illness can relate to my reactions.

In those first few minutes, I was stunned. I could hardly breathe. When I was finally able to call my parents and tell them what had just happened, my voice was still quivering. I could hardly say the word dialysis.

Everything happens in the time that it should. Few things happen when we want them to. We need to know that it’s okay to have bad days and feel down. But we can’t stay down and become negative. We need to fight for our mental AND physical health equally. We can be successful [even when we’re] dealing with chronic illness. It may be at something you never expected.