March 2023
I am so excited! This month is very special to me. It is the official launch of the Kidney Resource Network and the compilation of our first issue of the newsletter. It’s no coincidence that it’s also National Kidney Month.
Kidney Resource Network
So first, let’s talk about Kidney Resource Network. Its mission is to “strive diligently to build a relationship with kidney patients and their families where they trust Kidney Resource Network to provide helpful and important information to assist them in better management of chronic kidney disease (CKD) and the prevention of end stage kidney disease (ESRD).” The Network believes that education and essential resources gives every kidney patient the ability to live a healthier and more productive life. This is such a deeply important mission to me. Not only have I experienced friends and family suffer from end stage kidney disease, but I too have end-stage renal disease.
What makes having CKD so frustrating?
One of the major frustrations with having kidney disease is lack of adequate and timely information from health care providers, and in some cases, even government programs. When I was told that I had chronic kidney disease at the age of 29, the doctor literally said to me, “Well, you have polycystic kidney disease. That means you’ll either die of kidney failure or heart disease. If you need more information, get on the internet.” That was it. No explanation. No resources. No discussion. I had so many questions. Can it be reversed? How can I make things better? Do I need to change my diet? Am I going to die soon? Do I need surgery? But I got nothing. Unfortunately, I got a lot of nothing for over twenty years. I have gotten very little counsel about how to prevent further damage to my kidney…only how to deal with it until I would eventually end up on dialysis. It has been a very painful, hurtful, and frankly, unnecessary journey for me. I have had to do a lot of research and trial and error. I have unknowingly done a lot of things that I believe had exasperated my condition. The part that hurt my feelings the most is that simple disclosure of this information could have changed my entire life.
Now I am in my 50s and on the transplant list (for the second time) since 2021 and on dialysis since Christmas 2021. I have experienced many hospitalizations and surgical procedures throughout the years, a failed transplant in 2019, and removal of my left native kidney this past October. It took twenty years to figure things out, but I have finally found my sweet spot and have a great quality of life.
Why did I start Kidney Resource Network?
Recently, when my 26-year-old son got tested to see if he was a match to be a living donor, he found out that he, too, carries the polycystic gene and has cysts on his kidneys. There was no way in the world I would allow him to go through what I went through for the last 20 years. Now that I go to dialysis and participate in a lot of support groups online, I see that most patients are experiencing what I’ve been going through – lack of education, dismissive behavior from the medical community, lack of adequate resources, financial struggles, being forced to fight to keep their jobs, depression, frustration, loneliness, feeling misunderstood, a sense of hopelessness, fear of death, and wanting to fix it but can’t. This is why I started Kidney Resource Network.
Why is a newsletter vital?
The newsletter is an important part of education and building a community. Our goal is to not only provide perspectives of those in our community who are kidney champions (like patients, caregivers, medical professionals, and others in the community who have a heart for those who suffer from kidney disease), but to share the latest information about research, nutrition, share recipes, editorials to allow others to share their opinions and stories and CKD, links to other helpful information, and provide a calendar of relevant local events – all the things I wish I had access to when I was initially diagnosed.
Let’s kick off National Kidney Month with a bang!
Living my absolute best life,
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