Hello DPC community and extended family,
We want to welcome our new members and hope to reach out to those who need the great information we must share. We want to empower our patients, their care takers, and families with the tools they need to survive in the times we are living in. I am very excited about this issue with the wonderful topics we have for you. We at DPC strive to educate you and to raise topics for great discussion amongst the CKD community. We want you to share with everyone your stories because we must raise the awareness of kidney disease to also prevent others from walking the same path.
Since my diagnosis of chronic kidney disease, leading into End Stage Renal Disease (ESRD), and now living as a transplant patient, I have become more and more curious to know what other diseases and illness caused other patients’ kidneys to fail. In my research, I have come to realize that many other factors can attack one’s kidneys. Most of our CKD population is aware that the two leading causes of kidney failure, are diabetes and high blood pressure; however, there are many other ways one’s kidneys can fail and find themselves ending up on dialysis. There are conditions and illnesses that can attack the kidneys over time and there are many people who have inherited kidney disease.
In this issue, we will discuss diseases and conditions such as Fabry Disease, Hyperkalemia, and Polycystic Kidney Disease (PKD). Fabry disease is a rare disorder when the body lacks an important enzyme called alpha-galactosidase A. Over time, this can lead to life-threatening problems, including kidney failure. Hyperkalemia happens when potassium levels in your blood are higher than normal. It becomes harmful when it reaches high levels in the body where it causes serious heart and kidney problems. Those of us who have been on or currently are on dialysis know the day-to-day struggle of staying on a dialysis friendly diet in order to maintain the proper potassium levels. It is very important for ESRD patients to stay on top of that so that we can protect our heart. PKD is a genetic disorder that causes many fluid-filled cysts to grow in your kidneys, changing the shape of your kidneys and causing the decline in kidney function. PKD is a disease that touches my heart because I recently lost my mother earlier this year to cancer. She suffered from PKD in the later years of her life. It broke my heart to tell her that she would have to start dialysis in order to continue to live at the age of 78. It was most difficult because she watched me go on dialysis and therefore understood the pain, emotional toll, and difficulty that came along with living on dialysis. What helped was she also witnessed the courage and will I had to live being on dialysis at a young age and making sure kidney disease did not beat me. I remember the countless stays in the hospitals and scares my family and I endured when these cysts would burst internally, and my mother would be in so much pain. She experienced such discomfort as her kidneys would press up on other organs in the abdomen area. These are a few of the other diseases we will discuss to better understand.
I remember when I was on dialysis and wondering if I would be able to continue traveling. I remember the great joy I felt to learn about all the traveling opportunities afforded to ESRD patients such as being able to receive dialysis at other dialysis facilities and cruises that provide dialysis on their ships. Please take advantage of the information as we help you navigate your next road trip, flight, or cruise line whether you are an in-center patient or a home dialysis patient.
We at DPC want to thank our former DPC Education Center president, Nancy Scott, for starting our support group. I would like to encourage you to join our support group. Nancy has prepared wonderful topics and has brought in experts to help navigate and educate our community on topics that need to be discussed. When I was on dialysis and now as a transplant recipient, I feel it is very important to be a part of a group and a community of individuals that have similar experiences and pertinent questions that benefit all of us. I enjoy being a part of the support group and what we discuss is vital to our wellbeing and our emotional state. I look forward to hearing feedback and receiving more topics of interest from our wonderful CKD community and family.
Stay safe and well wishes,
DPC Education Center