First, let me introduce myself. I was diagnosed with End Stage Renal Disease (ESRD) in the summer of 1999, and typically for me, I went into denial. But that has never stopped me from doing what I do best: moving on. While the disease was taking control of my body, I began to read up on kidney disease. The more I read, the more I realized that I was going to be in for the fight of my life, a fight which –I am here to tell you– I was not going to lose. But even now, when I look back on how far I’ve come, I realize I have a ways to go.
Growing up in a family of ten with our father as the only bread winner, we kids all knew how to dream, how to imagine and how to improvise. Let me begin with my quest, or my adventure, about what I would do to inspire or to help fellow kidney patients if I found a check in the amount of $100,000 in my mailbox.
First, I would educate them. Once a person has been diagnosed with renal disease and will need to begin dialysis, I would have a fellow dialysis patient who has had the procedure–catheter, life-site or graph–assigned to the new patient. Let them share their personal story about the surgical process, the healing period, and what the incision will look like once it has healed. Although my brain knows this procedure will not only save my life but give me a better quality of life, as a woman, my heart tells me that I will have a scar that will be unattractive and might limit my wearing of certain clothing. To some this might seem superficial but to a female, especially a young female, this is a very real concern. It’s important to have affirmation from someone who has already been where I still have to go.
Once the patient has decided on the dialysis center they will use, I would have the manager of that center or his designee contact the patient to set up a personal tour of this particular center. During the tour the manager can explain to the patient what they can expect and assign them a mentor.
The mentor will share his or her own personal story, answer any questions the new patient might have, invite the new patient to visit with other patients while they are being dialyzed and talk about food choices. The mentor can also help prepare them for the emotional experiences they are going to go through that are common in all illnesses. We all do a balancing act between regulating our blood pressure, fluid gain and high potassium and phosphorous levels. While dieticians and the medical staff will counsel a patient and give them all the necessary information they will need to add years to their life, a mentor will give them what they need to add life to their years.
Alcoholics Anonymous (AA) has built a very successful treatment program based on the idea of assuring that each new person has a mentor. There are things that we will share on a one-on-one basis with a person who has walked or is walking in our shoes that we will not share in large groups or even ask a medical professional.
At least monthly, have people who are on dialysis and working share their stories. Or have a transplant recipient come in and share their story. Sometimes when a person starts dialysis, they are not interested in a transplant, but as time goes on they become more amenable to the idea.
Hosea 4:6 states “My people perish for lack of knowledge.” Let’s not perish, let’s educate! My desire is that all of my fellow kidney patients be proactive about their health. Whether you have developed kidney disease because of life choices or genetics, it’s important that you arm yourself with all the knowledge at your disposal.
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