Living with CKD

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Self-Confidence and the Teenage Dialysis Patient

Self-Confidence and the Teenage Dialysis Patient

By Krissi Bates

This article originally appeared in the September 2004 issue of aakpRENALIFE, Vol. 20, No. 2.

My mother always said, “You make your own happiness.” That phrase wasn’t something I would truly come to understand until years after. I was a scared teenager, barely 15-years-old, finding out I would live a different life than my idealistic teenaged mind thought lay ahead. The moment I heard “chronic kidney disease” (CKD) I thought my life was over, my happiness gone, my future surely in disaster. But, my mom never stopped reminding me with that one little phrase that I, and not some silly kidney disease, was in charge of my attitude and future.

Since being diagnosed 13 years ago, I had the opportunity to grow as an individual and learn to appreciate the “tools” I was given to live my life successfully as an end-stage renal disease (ESRD) patient. Now, as an adult, I can look back and appreciate the best gift my parents gave me to handle kidney failure. They played a crucial role in my early coping with CKD by simply giving me good living proof of how anyone can overcome even the most dismal sounding diagnosis with a little bit of optimism and a whole lot of determination. They helped me find the key to my success, which is a positive attitude and self-confidence.

The foundation for my self-confidence began with my parents but continued with my resolve to be happy with my life, no matter what cards I am dealt. While it has not always been easy to have a positive attitude (like everyone else, I do have bad days sometimes) it has been an amazingly rewarding journey into self-discovery. When I finally learned what it meant to make my own happiness, I was able to believe unquestionably in who I am – a self-confident individual who is ready to take on all of life’s challenges, including ESRD.

Hearing the words “end-stage renal disease” from your child’s doctor reverberates something so threatening, permanent and horrifyingly final. I am certain my parents must have been just as dismayed as I would be today if I found out my child had kidney failure. But, it doesn’t have to be the dark and dismal future that you might be imagining. As you embark on the ESRD journey with your child, consider that your negative and frustrated feelings are normal and will fade with time. You and your child will learn how to make your own happiness, just as I did.

To help your child become a self-confident dialysis patient, you must first understand that he or she cannot get there in a single leap. First, they need a good example to follow. Begin by examining your own attitude and, if necessary, make changes toward a more positive outlook. Secondly, you and your child must learn to accept ESRD one step at a time. Each of us, young or old, grieve the loss of our kidneys when we learn that they have failed. As a parent, you have probably grieved for your child’s loss while watching your child struggle with the physical, emotional and mental trials that accompany ESRD. Embracing this grief and learning to understand and accept that feelings of denial, anger and fear are normal is the healthiest way to a positive outcome. Attempts to deny the grieving cycle will only allow unresolved, negative emotions to resurface at a later time and prevent your child from becoming a self-confident, self-reliant and functioning individual.

After you begin to accept your child’s ESRD, take advantage of all the resources available to you and learn everything you can about kidney disease and dialysis. Join a support group or speak with other parents of children with ESRD. Research every Web site with kidney disease information, and be sure to ask your child’s doctors lots of questions – learn everything you can and never give up hope. The more you learn, the more you will understand and the greater benefit your child will have from the knowledge you possess and pass on to your child.

While we can shelter our smallest kidney patients from much of the technical and medical jargon associated with ESRD, we cannot, and should not, shut them away from what is happening to their bodies by not speaking with them about it. Do not be afraid to be honest with your child, as much as you can be. Honesty will help children begin to understand and accept themselves and have confidence in their life and future. Communicating with children about what is happening to their bodies is essential to their self-confidence. Allowing children to help make decisions about their health not only encourages the necessary skills for them to continue making wise decisions into adulthood, but also puts them in the “driver’s seat” of their own bodies.

Just as it is important to have good communication and decision-making skills, so is helping your child deal with the emotional rollercoaster of ESRD. Help them understand and work through their feelings by offering many opportunities to talk – and do not forget to listen! Let them be angry or sad and then help them find a way to like themselves for who they are. And, once in awhile, just let them be kids instead of just kids with a chronic disease.

You, like my parents, cannot change what your child is going through. You can, however, set a positive example in your attitude to help your child during the ESRD journey. Self-confidence will come almost naturally when you and your child begin to understand and acknowledge the emotions, good and bad, that result from all of life’s experiences.

Making my own happiness has not always been the easiest thing to do, but it has been the one thing I have counted on when nothing else seems to be going my way. Knowing that I am in control of my own happiness has kept me confident about life – confident that each day is worth living and that I am happy to be alive.

Annual Renal Teen Prom

Renal Teen Prom

With the theme, "An Evening Among the Stars," the next Renal Teen Prom will be held on Sunday Jan 14th, 2007. The event is always held during the long weekend encompassing Martin Luther King, Jr. Day. By holding the event on a Sunday, there are no dialysis schedules to conflict with the event, and the teens do not have to go to school the next day.

The Renal Teen Prom is a free event for teenagers and young adults with kidney disease. Set in the style of a senior prom, this gala draws more than 300 “kidney teens,” their guests, and volunteers from throughout Southern California, with kidney teens now attending from as far as Arizona, Texas, and Canada.

The Renal Teen Prom is held on the campus of Notre Dame High School in Sherman Oaks, Calif., a Los Angeles suburb.

The teens are treated to a night of dancing and entertainment, dinner and hors d’oeuvres (renal-friendly), limousine rides, glamour photos taken in a studio setting, and visits by Hollywood celebrities. They also are given the chance to discover that one friend can make a difference!

Unlike most high school proms, the Renal Teen Prom can be attended year after year. As such, to many of the returning guests the prom has become a reunion of friends. These friendships have proven to be particularly valuable to those teens who are on dialysis: As these teens transition into treatment in adult dialysis units, the friendships made as a result of the prom allow them to still feel connected with others in their age group who are experiencing similar health-related situations.

Although a single night of dancing and socializing cannot make up for all the lost experiences that CKD patients will encounter, it will show these young people—some for the first time—that they can live a fulfilling, successful life despite their kidney problems. One of the key ingredients for living that type of life is to connect with others who understand what they’re going through.

RSN’s Renal Teen Prom provides young kidney patients the opportunity to interact with their peers, some of whom will become lifelong friends, and to share their experiences, strengths, and hopes in a non-medical setting. This is their night to have what no young person should miss... the chance to enjoy being young.

The Renal Teen Prom has become one of California’s most inspirational news stories, with live broadcasts from the prom appearing throughout the night on Los Angeles-area newscasts. A special on the prom was featured on Lifetime Television, and a young girl who attended the 2005 prom wrote about her experience in a recent issue of Teen Magazine.

For more information on this, and other kidney-related support, visit the Renal Support Network.

Dear MyKidney.com Readers

Dear MyKidney.com Readers,

Yes, yes, I know, I haven't updated recently - I am alive and well and mostly caught up in everyday life without much time to "blog".

I wanted to place an entry in my blog as an open invitation to those of you who might want to contact me for support - I've recently received several emails from some of you reaching out for advice and help. I want you to know that I am interested and concerned about each and every one of you and that I want to always offer my ideas, suggestions and support whenever I can. Kidney disease and failure can be confusing, difficult and upsetting to you and your family and its nice to know someone has "been there and done that" - Please email me even if you just want to tell me your story or share with me your thoughts about this website.

If you need someone to talk to, or just someone to vent your frustrations to, please email me at krissi@mykidney.com .

I love you all and wish everyone continuing good health.

Krissi

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